-Karis Kornfield

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Monday, July 19, 2010 ~ Home again, home again . . .
(Debbie)  NEW e-mail address ~ DebraKornfield@Gmail.com ~ see below.

Since we last updated:

Re. Karis:

One more piece of information on this long post:  I am changing my e-mail address to DebraKornfield@Gmail.com.  If you sent me an e-mail in the last few months that I haven’t responded to, please send it again to this address.  I no longer have access to my Eudora program where I had downloaded all of my e-mails (and filed, and maintained my address list), so I’m playing catch-up.  Thanks for your patience!

Sunday, July 4, 2010 ~ Happy Birthday, Ben Podnar!
(Debbie) Karis is doing pretty well; her blood sugar is back to normal — best guess is that she had a quirky reaction to the insulin in her TPN, even though it was the same amount she usually gets.  (Next time we won't put ANY insulin in the TPN!)  However, since yesterday morning she has been experiencing severe pain in her joints, that has gotten worse through the day today.  She says it feels like OKT3 pain (the awful medicine that is used to fight severe rejection).  Apparently it is possible that it is exactly that: even though it's been over a year since she last had OKT3, it stays in a person's system in some fashion and can give surprise nasty side effects even this long from when it was put into her body.  We hope it doesn't last long.  It's very hard for her to stand or walk.

Assuming the blood cultures continue negative, she'll go home tomorrow.

Saturday, July 3, 2010
(Rachel) Karis' blood sugar bottomed out this morning and we rushed to the hospital in an ambulance.  Thankfully, it has since stabilized.  However, they are keeping her overnight for observation.  The low blood sugar, however makes no sense, as she was on TPN last night and that usually causes her blood sugar to be high.  Also, her joints are hurting, which has no explanation whatsoever. 

(Debbie)  Karis was hospitalized on 11 North after a long day in the ER, after her blood sugar bottomed out at home to the point of not waking up and having to be brought in by ambulance.  We don't know what caused that to happen.  Otherwise she's been doing pretty well.  Hope her transplant doc, who will see her tomorrow morning, will have some idea of what happened.

Saturday, June 26, 2010 ~ Happy Birthday, Kirk!
(Debbie)  Karis is doing well; manated to go a whole week without going to the hospital, despite an obstruction and dehydration, both of which we were able to manage at home. Her leg is healing; two weeks after the injury, there's a small area (about the size of a quarter) which has still not "bonded," but the rest looks good; we know it will take several weeks to heal completely.  Dave asked us to measure it so he would have a better idea of what kind of wound it is: 5½ in. by 1½ in. at the widest part.  Karis is allowed now to take the dressing off when she's at home, so it can breathe.  Karis asked to reduce the steroids one more step and to try stopping the TPN, but both those requests were denied for the time being.  Don't want to get impatient and have another reversal — better to take it more slowly and keep making progress in this battle to come down on the steroids.

Thursday, June 17, 2010 ~ Praying with much love for the D'Clute family
(Debbie)  God called Ruth Home yesterday morning.  Thank you to each of you who prayed for her.  We are so grateful for the two times we were able to visit and will cherish those precious memories.

Karis had to wait a long time to see Dr. Kareem at clinic today, but it was worth it.  He decided she can walk a little bit, which is such a great sense of freedom for her!  She doesn't have to go back to clinic for a week, if she continues doing well!  That's another great sense of freedom.  She's taking one more step in the battle to reduce steroids, and going to just two nights of TPN/week — yet one more liberation!  For the time being she'll be having physical therapy at home, to reduce stress on her leg.  She's hoping not to let her injury debilitate her too much.  All good things!

Tuesday, June 15, 2010
(Debbie) Karis is home! and doing well.

Monday, June 14, 2010 ~ noon
(Debbie) Karis won't be coming home today after all — too many loose ends to tie up.  Probably tomorrow.

Some are asking whether the fact that she obstructed again means she might have surgery — at this point, no.  She's been doing so well, in regard to the obstructions, and this one resolved so quickly, that we'll go back to trying to prevent obstructions and see how things go.  Since the docs consider surgery high risk, they will only do it if she goes back to obstructing seriously and frequently.  We hope that she'll be able to stay well and enjoy the summer.  We're grateful to God that in regard to intestinal function, she has improved so much.

Monday, June 14, 2010 ~ Happy Birthday, Tom!!
(Debbie)  "So, you were home, what, six hours?" said Dr. Costa as he walked into Karis's hospital room yesterday morning.  He was joking, of course — she was actually out closer to ten hours!

Saturday, Karis signed discharge papers during halftime of the US-England game, and we listened to the rest of the game on the way out to near Latrobe to visit Chrissy and Ben--first time we made it out to their house since their wedding in Maine in January!  (That is, I listened — Karis slept.)  We had a lovely time but by the time we drove home, Karis wasn't feeling well and by 11 pm we knew she had a full-scale obstruction.  She went to bed and tried to sleep but was in too much pain.  At 2 am she begged me to take her to the hospital (you know that means serious pain).  She was admitted directly to 12 North.  Around 5 am a bit started to come through, and over the next hour she put out close to 2 liters and another liter in the hour after that.  So although we were tempted to think, oh, if we had only held out a few more hours at home . . . but she needed support not to dehydrate, so it was just as well she was in the hospital.

I haven't talked to her yet this morning — asked her to call me, so that I don't wake her up if she's sleeping.  But she was supposed to have a scope and biopsies this morning (haven't done that for several months) and if that and her labs all look good she'll be coming home today.  Dare we hope that she'll then stay home for awhile?!

Friday, June 11, 2010 ~ Happy Anniversary, Marsha and Vance!!
(Debbie) 4 p.m. Karis has been admitted to room 70 on 11 North at Montefiore.

11:30 a.m. Karis fell again this morning, this time lacerating her lower right leg to the tune of 30 stitches.  The ER docs weren't successful in stitching the wound because the skin kept tearing, so they called in a plastic surgeon.  He thinks there's little chance that the wound will heal; probably she will need a skin graft.  But we won't know that for several weeks.  Meanwhile, she's not to touch the dressing for 5 days and needs to keep her leg up.

We were just thinking we were ready to leave the ER when the ER doc called the transplant team to report, and the transplant docs think Karis needs to be admitted.  Even though we can do the necessary IV antibiotics at home, they don't think it's safe for her to be at home, especially because they had already ordered blood work every two days (our discharge orders from yesterday) and they think it's too difficult for us to manage moving her from house to car to hospital and back again so frequently.  I've just come home to care for a few things and expect that debate will be resolved one direction or the other by the time I get back to the hospital.

"Bummed" is not nearly a strong enough word for how frustrated Karis is feeling, especially with herself, for falling again. I'll post again when I can, but assume she's in the hospital unless you hear otherwise.

Thursday, June 10, 2010 ~ 10 p.m.
(Debbie) We signed discharge papers at 4 pm, went to pick up meds at the pharmacy, crossed town to pick up Rachel and another friend, then picked up three more friends, and went downtown to the Pittsburgh arts festival!  It was a beautiful evening and a good time was had by all.  Karis had pain medicine just before we left the hospital so that helped her to enjoy the festival.

We're home now getting sorted out and settled in again — back to "life" after a brief dramatic interlude.  Karis's bruises are very sore and will take time to heal, but we're grateful nothing more serious developed.  (A word to the wise: DON'T say, "Karis, don't fall" — that seems inevitably to lead to her next tumble!)

Thursday, June 10, 2010
(Debbie) Karis is in the hospital.  — 9:20 a.m. She is receiving a blood transfusion and after that she'll be discharged! —

Karis fell yesterday morning, here at home, and bruised her back badly enough that her blood pressure was dropping & she felt lightheaded (since she's on Coumadin she bleeds easily).  Had to take her in to the ER and from there she was admitted.  She's on 10 South, a wing of the hospital we hadn't seen before, because there was no space on 11 or 12 North.  If her labs are back in line today she'll be coming home.  Hope so, because she has lots of plans for today and the rest of the weekend.

Please add to your prayers a new friend, Aly, who is struggling with many of the problems Karis has had in the past.  Thanks.

Monday, June 7, 2010
(Debbie) Sorry it's been so long since I have updated.  Karis is doing well — she might even write something to you herself one of these days, when she's not too busy having a life!  She's getting better at reading and writing and focus and expressing herself verbally, though she's still frustrated at how slow she feels herself to be.  Her biggest medical issues have related to hydration and electrolyte balance (especially in the heat) and continuing to manage things on a daily basis so she doesn't obstruct (she's had some obstructions as she's tried to find her dietary limits, but managed to get through them at home).  She's getting stronger, though I still find myself needing to catch her several times a day so she doesn't fall when walking — she WOULD fall if she tried to walk without support.  She's had the opportunity and the energy to do a number of fun things the last few weeks.  I'll let her tell you whatever she wishes about what she's been up to.  She was hoping to be taken off TPN last week, and again today at clinic, but her labs still aren't as good as they need to be to manage without that extra bit of IV fluid and protein and electrolytes and nutrients.  We just need a little more patience.

We're still concerned about our friends who are struggling in the hospital.  REALLY appreciate your prayers for them.

Sunday, May 23, 2010
(Debbie) We just spent almost seven hours at 7 West getting IVs for "critically low" phos and potassium and fluids for a bit of dehydration.  In consequence we don't have to go to clinic tomorrow!!  That's wonderful because it will be Dave's last morning with us until mid-July; he flies out for Brazil tomorrow afternoon.  It will also be our first morning with Rachel and Valerie here.  The three of them should get back from the wedding in New Jersey at about 11 tonight.  Karis is feeling a lot better than when we arrived at 7 West.  We need to figure out what she needs in order to prevent these episodes of dehydration.  She'll have labs again Tues. morning and then clinic on Thursday.  For the time being TPN will continue only M, W, F since Karis has been successfully eating more and hasn't obstructed for about six weeks.  When we got home from 7 West we took a 45-minute walk (yes!  Karis walked for that long!!) admiring the flowers in our neighbors' lawns.  We hope to get to know some of our neighbors this summer, something we haven't yet managed.

Karis hasn't been able to visit Angie or Pauline because they both have infections.  Please keep praying for them!  Thanks.

Friday, May 21, 2010
(Debbie) Dr. Kareem just came by and said Karis can go home once her potassium infusion is in (about four more hours).  Her labs today were better than yesterday but still needing some electrolyte corrections. Yesterday I wasn't able to talk to anyone until the afternoon (the docs were in the OR doing a transplant), and then we really had to scramble to get Valerie and Junior on a bus when the docs said there was "no way" Karis could go to New Jersey for her cousin's wedding.  Everything worked out OK, with the help of rental cars where we were planning on using our car. Karis and I are disappointed to be missing the wedding but are happy that we got to go to Valerie's graduation last weekend.

Wednesday, May 19, 2010
(David) Karis was hospitalized with low blood pressure 70/40 as a result of dehydration.  She's now stable and fine, though the docs have started her on a new regimem of antibiotics in case it's something more serious than dehydration.  Her going to the wedding in NJ is up in the air, but could still happen.  Thanks be to God she didn't have any problems during the five days we were in South Bend for Valerie's graduation from Notre Dame.

Wednesday, May 12, 2010
(Debbie) Karis is doing well and tomorrow we travel to South Bend for Valerie's graduation weekend.  The retrograde study was inconclusive so Kareem said we may have to wait until she obstructs again to figure out the exact spot (too bad they didn't do this one of the last four times it happened . . .).  Meanwhile her system is doing so well on a pureed diet that she's down to having TPN only three times a week and has been able to cut back some on her steroid dose.

Please pray that Karis will stay well all five days that we're away from Pittsburgh!  Thanks!

Wednesday, May 5, 2010 ~ Happy Birthday, Karis!  Belated Happy Birthday, Peter!
(Debbie) 
Karis received a birthday card that we couldn't resist sharing with you.  It's a commercially printed card, believe it or not!!

      May this year, by God's good favor,
      be one in which you overcome
      all obstacles and obstructions to
      attain your dearest ambitions
      and reach the heights of grace and joy.

We have a reprieve, of sorts.  The doctor our docs want to do the retrograde study is out of town this week, so it won't be done until next week, and Karis won't have surgery until at least the end of May or June because we have so many wonderful family activities coming up (Val's graduation and Ben & Sarah's wedding).  We are praying that Karis will stay well enough and find energy to enjoy traveling and all of the fun.

At clinic Monday Karis's white count was back to normal; thanks for your prayers!  Dr. Costa looked at the official report from the upper GI done last Friday.  Apparently when the doctor studied the pictures more carefully, he did find what they call a "transition zone" (indicating a stricture) near the end of the ileum, close to the stoma.  Dr. Costa said that should make the surgery much simpler than they had feared (the retrograde study should make the whole situation much clearer). Dr. Costa was optimistic so we are encouraged.

Friday, April 30, 2010
(Debbie) Karis had an upper GI and small bowel follow-through done this morning.  They let me watch, and the doctor said everything looked normal, which he thought puzzling given the CT from her last obstruction.  He said he would study the films more closely and then talk with Dr. Kareem, but the next step might be a retrograde study through her stoma (they can't do both on the same day because her bowel is so full of contrast).  Karis is wiped out from having only clear liquids yesterday and NPO since midnight, and spending the morning since early at the hospital, so she's napping now instead of doing PT.  Her white count is very low due to medication to fight a high EBV count, so she's vulnerable to infection.  Please pray that she will stay well! Thanks!

Tuesday, April 27, 2010
(Debbie) Yesterday in clinic Dr. Kareem saw Karis for the first time in a couple of months, I think.  He was not happy and changed a number of things around.  He also spent quite a bit of time studying the CT from this last obstruction and said no amount or kind of medication is going to solve her problem; she'll need surgery.  He wants her to have an upper GI follow through as soon as it can be scheduled, to try to pinpoint where in the bowel the stricture or kink is (CT doesn't show this).  We were encouraged and discouraged: encouraged because we're tired of fighting the daily battle to keep her from obstructing, and discouraged because another bowel surgery is not a happy prospect.  But TODAY is a gorgeous day and we're just going to enjoy it.  Hope you do too!

Saturday, April 24, 2010 ~ Happy Birthday, Claire !
(Debbie) The response that came back from the docs was to try a new medication and to put Karis back on a liquid diet.  We'll see how that goes.  So far, so-so.  But the med takes a couple of days to kick in.

Good news about Angie: she's off the ventilator and has been able to sit in a chair!

Friday, April 23, 2010 ~ Happy Birthday, Abigail !
(Debbie) You will show me the path of life . . . (Ps. 16:11), how to move forward, one step at a time, making the most of each precious day.  Karis came home from the hospital yesterday afternoon, but she's already had two more obstructive episodes, one at the hospital (which opened up before we left), and another at home of about 12 hours which already had Karis quite uncomfortable when she went to bed and finally opened up about 4:00 this morning.  This after eating small amounts of very soft foods.  Though the severe obstruction which put her in the hospital was resolved, it seems nothing is really solved.  I've just called the hospital to ask for advice and am waiting for a call back; meanwhile Karis isn't eating until we figure out what to do.  It's scary to think of going back to the pain she suffered a week ago.

It was lovely, though, to leave the hospital on a beautiful spring afternoon.  Karis knew exactly what she wanted to do before going home: a trip to Home Depot for some herbs and pepper plants that we intend to plant today in a tiny space of dirt beside our front steps, and then to Elmer's to buy some tiny catfish for her aquarium.  We got caught in rush hour traffic on the way back and then got a call from the home health delivery person waiting by our front door with Karis's TPN and antibiotics, so I tried an alternate route and got a little bit lost . . . the delivery man was very sweet and patient!  There are advantages to working with the same company for many years — as well as knowing everyone at the hospital so well.  I had the chance to tell one of the administrative nurses on 11 North what excellent care Karis received — it helps so much!

Monday, April 19, 2010 ~ Happy Birthday, Rachel!
(Debbie) We had a lovely time in South Bend, and Karis is doing great! Dr. Costa just came by and pulled her NG tube — she has her face back! He says NOTHING by mouth yet; wants to take it slowly, and wasn't willing to discuss how long she might remain in the hospital — said it's too soon to think about that yet. But Karis is hoping to take a little walk later on today (she's taking a nap now).

An upper endoscopy was done on Pauline that shows she's still in rejection in her upper intestine. Angie now has pneumonia. Please pray!! Saturday on the way to South Bend we stoppd in Ohio for a precious time of talking about Heaven with Ruth, her sister Linda, and their friend Pauline. Shortly after leaving Ruth's home we heard the good news about Karis's obstruction opening up, so went on much relieved!

At Valerie's church on Sunday we sang Matt Redman's song, You Never Let Go. Very appropriate to this week. Check it out:
www.LyricsTime.com/matt-redman-you-never-let-go-lyrics.html

Saturday, April 17, 2010
(Dan) Good news — Karis's obstruction began opening up around noon today.  She is feeling much better, although it has not all completely cleared yet.  She is enjoying some good company and thanks everyone for their prayers.

Saturday, April 17, 2010
(Debbie) I wanted to talk with Karis's nurse before we leave town.  No change, really (other than details about electrolyte replacements, etc.).  Her ostomy bag was changed at 4 am and is still completely clean, nothing coming through at all.  Thank you to each of you who is giving prayer and care coverage while we're gone to South Bend.

Friday, April 16, 2010
(Debbie) The gastrovue accomplished exactly nothing, from what we could tell.  Dr. Costa explained that it is a very potent laxative, and he gave her ten times the normal dose yesterday and again today.  He's going to try again tomorrow and Sunday, but if that doesn't work, then we're probably looking at surgery.  He's afraid there's a kink in her intestine that no amount of laxative will undo.  We're confident that she's in God's hands and he will direct our surgeons.

We're grateful for all who will be keeping Karis company over the weekend.  If she's asleep, stop by to see whether Pauline would like a visit.  She's across the hall, in 1173.

Friday, April 16, 2010
(Debbie) Karis is doing better!  Her tummy is softer and less painful.  Dr. Costa is planning to do another gastrovue trial this afternoon.  He thinks we may get through this without surgery.  Karis actually let us give her a bath and move her to an armchair.  Yesterday she wouldn't let us touch her.  Her breathing is better sitting up like this and she's more alert and responsive than yesterday (though still not able to actually converse).

Holly Feiler is going to be our "point person" over the weekend while we're gone.  Still call me though if you want to visit tomorrow or Sunday — I'm putting together a schedule (574-339-3350).  Thanks!  We expect to be home by 7 or 8 Sunday evening.

Thursday, April 15, 2010
(Debbie) At the end of the day, Karis is a little better than she was last night because her kidneys are working again and her blood pressure is back to its usual problem, too high instead of too low.  I think Karis would say the main word to describe her day is pain.  Her tummy continues very distended, hard, and painful.  She can only have pain medicine every four hours and its effect seems to wear off after about one hour, so it has been a tough day for her.  Dr. Costa tried an experiment of giving her a large dose of nondiluted contrast (thru her NG) since sometimes this causes obstructions to open up.  Didn't seem to work for Karis; I don't know whether he'll try again tomorrow.  She did put out about 100 ml today, which is better than nothing, but this didn't seem to have any particular connection with the gastrovue (most of it had already come out before the gastrovue experiment).  Her blood cultures came back positive for gram negative rods, so two more antibiotics were added to the four she's already on.  The nurses are having a hard time getting everything in, since they're using one of her two ports for 24-hr TPN.  Perhaps as the bacteria becomes more defined, they'll start cutting some of the antibiotics, but Costa says her gut is doubtless growing all kinds of bugs that can translocate to her bloodstream.  She's back on a high dose of IV steroids to help prevent her flipping into rejection.  She had several moments of destatting into the 80's despite 4 liters of oxygen via cannula, so we're trying to get her to deep-breathe and move around a bit, but that's hard because of the intensity of the pain.  So please pray she doesn't develop pneumonia!  And, of course, that her bowel will open up!  Thank you!

For friends in the Pittsburgh area: Dave and I will be away Saturday and Sunday (so we can see our daughter Valerie perform in a play at Notre Dame), so if you would like to spend a little time visiting Karis, that would be much appreciated.  I hope by then she'll be in a better place than she has been the last couple of days, but she has been pretty sick so won't likely be able to interact very much — don't go with expectations of great conversation or activities. The idea would be more so that she won't be alone and can ask for any kind of help she might need.  I haven't yet seen her push the call button for the nurses, for example, so don't like to leave her alone too long, though the nurses have been great.  And of course, she's NPO — can't eat or drink anything.  If you would like to visit, could you call me so that I can have an idea of who might be there when?  Thanks.  She's in room 1182 on 11 North at Montefiore.

Wednesday, April 14, 2010 ~ midnight
(Debbie) We're ending the day encouraged.  Rather than continue a downhill slide, Karis's blood pressure and heart rate stabilized through the evening (after receiving lots of fluids and hydrocortisone IV) so she didn't have to go to ICU (which Costa was considering during the afternoon — he came by several times to check on her).  Her kidneys are still pretty much shut down, her tummy extremely painful and she's still draining a lot through her NG tube (since it's not going the other direction).  Dave and I felt OK about coming home for the night.  She's receiving excellent nursing care, which helps so much.  They've had two nurses assigned to her both on the day shift and the evening shift (not just to her — they have other patients as well, but still, it helped a lot).  They've promised to call us if anything changes for the worse during the night.  And we'll see what tomorrow will bring . . . amazing how quickly she can go from being well to being very sick (was that just yesterday I wrote how well she was?!).

Wednesday, April 14, 2010
(Dave) Karis was admitted this morning with a bowel obstruction after a sleepless painful night.  Dr. Costa started Karis on four antibiotics.  He said the CT scan shows some serious issues.  They're hoping it can be turned around (last time this took six days), but if it can't they'll have to do surgery.  Pain medicine is helping her a lot, allowing her to finally sleep.  She was very pale, but with oxygen she's "pinking up" again.  She's having difficulty breathing because her tummy's so big and pushing up against her lungs.  An NG tube should help decompress her tummy.  Once again, she won't be able to eat or maybe even drink until this is resolved.  Thanks for your prayers!

Angie came through her surgery well.

Tuesday, April 13, 2010
(Debbie) Thank you to those who have asked about Angie, Pauline, Ruth, and my brother Steve.  It means so much to us to know that you are praying for them.  Angie is having major surgery again today (7th surgery in 12 weeks, I think it is).  Things have been really tough for her.  Pauline has had all of the "big gun" anti-rejection drugs the docs think safe to give her and is still very sick; she needs a miracle on the order of what God did for Karis in similar circumstances a year ago.  Ruth is at home under hospice care; we look forward to seeing her this weekend in connection with a trip we're planning to see Valerie perform in a play at Notre Dame (Ruth lives right on the way between here and there).  Steve has not yet found a solution to the headaches that have been plaguing him for months now.

Karis, on the other hand, is doing well!  Getting stronger, able to do more for herself.  Tomorrow will be four weeks since she got out of the hospital.  We are deeply grateful.

Monday, April 5, 2010 ~ He is risen indeed !
(Debbie) God answered our prayers that Karis would be home through Easter and be able to attend services at Ascension!  This is the first time in five years that she has not been in the hospital over Easter.  Dan is here, and we've been able to enjoy the lovely spring weather with a picnic at a state park, eating meals out on our deck, and dining on Easter at a friend's home. As the daffodils and tulips bloom and the new little leaves unfold on the trees, we sense new hope gently budding in our hearts.

At the same time, so many of our friends are struggling: Pauline with severe rejection (again!), Angie fighting infection in ICU, my brother Steve making no progress in conquering his headaches . . . and several others.  Please continue to pray for Dr. Costa and the whole transplant team who have carried an extra-heavy load the last weeks as Dr. Kareem has been out of town.  Thank you!

Friday, March 26, 2010
(Debbie) Angie had another surgery yesterday afternoon, and then had to go back in the evening for emergency surgery because she was bleeding from her JP drains.  Ruth has gone into Hospice care.  The family sent this verse:  There is no fear in love.  But perfect love drives out fear, because fear has to do with punishement.  The one who fears is not made perfect in love.  1 John 4:18

Karis, meanwhile, fell again and this time lacerated both knees.  She was walking along fine, with support, and suddenly her knees just buckled.  She has 9 stitches in her right knee but the left (the one she cut the other three times) was rather mangled so there was nowhere to put stitches.  It bled a fair bit over the first 24 hours since Karis is on Coumadin.  She's to lay low for yet another day to not start the bleeding again (it bleeds whenever she moves around) and she's on IV antibiotics to prevent infection.  Otherwise she's doing pretty well, set up on the living room couch where she can watch her fish and Holly's daffodils, surrounded by books, music, her little laptop, etc. but more often than not just sleeping.

Tuesday, March 23, 2010
(Debbie) Karis had some challenges over the weekend but is doing better.

She asks that you pray for our friend Angie who was off the ventilator for one day but had to go back on last night and has a series of complications following a surgery on her pancreas last Thursday.  And Ruth's cancer is spreading very fast, causing severe pain.  She asks prayer for wisdom to know whether she should attempt treatment or not. Thank you so much.

Tursday, March 18, 2010 ~ 5 pm
(Dave) Karis has been home for about 24 hours after seven days in the hospital.  PTL!  She's spent most of the time in bed or lying on the couch with little energy and coughing a lot, but at least she's home.  She'll have some treatments on 7-West tomorrow and hopefully some indication as to how to deal with her coughing.  Also tomorrow should be her last bladder irrigation treatment which will simplify things for us here at home.  She's getting about half her nutrition from TPN since she still can't eat normally without getting seriously distended.  Pray that this would get better, since TPN over the long-term is destructive of the liver, pancreas, etc.  She continues to need someone with her 24-7 since she can fall at any time.  On the up-side, she took a slow walk with me for more than half an hour yesterday.  Yea!  We're enjoying beautiful Spring-like sunshine with temps in the 60's!!!

Sunday, March 14, 2010
(Debbie) The docs have been puzzled about Karis's fevers (all low-grade) because in every other way she's been doing so much better, but they think they've figured it out: today we were told that she has a yeast infection in her bladder.  The treatment is a continuous irrigation with a solution containing medication.  They've never done this at home before, but tomorrow they're going to investigate that possibility.  If the home health agency isn't prepared to support this at home, she'll continue in the hospital five more days, a frustrating prospect!  If she comes home, she won't be able to go anywhere until the five days are completed, but it will still be better than a hospital room.  Either way, we're glad that overall she's doing well.  Dave arrives in Pittsburgh from Brazil tomorrow afternoon and will be with us until Valerie's graduation in May.

Friday, March 12, 2010 ~ noon
(Debbie) Karis will indeed not go home today because of the fever. 

Please pray for Angie, who was transferred at 5:30 this morning to the TICU with pneumonia and is now on a ventilator.  Poor girl has had one complication after another.  This is hard.  Ruth has been denied one treatment by insurance; other options are being investigated.  Meanwhile the friend who came to stay with her has broken her shoulder.  Thanks for your prayers for all four of these gals!

7:45 a.m.
(Debbie) Karis ended the day yesterday much stronger than she began it.  She walked once around the unit (tried to visit Angie but she was sleeping) and sat up with us at a table for a couple of hours working on a jigsaw puzzle.  (Want a challenge?  Come help us — it's all pick-up sticks!)  I talked with her nurse just now and he doesn't know yet whether she'll be able to come home today as she's still running a low fever.

Thursday, March 11, 2010
(Debbie) We tried very hard to keep Karis out of the hospital, but were not successful.  I took her to the ER in the middle of the night with fever and breathing problems and she was admitted to 12 North.  We hope she'll turn around quickly and come home again — the weather is too nice these days to spend indoors!

Several things piled up one after the other this past week: a cold, another obstruction over the weekend (we did manage to keep her home through that one), cold worsening, zero energy, blood pressure and blood sugar issues, cold worsening to the point they decided to do a CT scan yesterday which showed a sinus infection.  Karis had her first double dose of antibiotics on 7 West yesterday and Dr. Costa suggested it might be good to admit her.  We declined, since we can do IV antibiotics at home, but didn't make it through the night.  This is all pretty discouraging to Karis, who wants so much to have a life apart from all the medical stuff.  Valerie is here this week on her spring break and Karis had other ideas of how to spend the time with Val than doing the hospital routine again!  It will be wonderful if this can be a quick in and out.  We're praying that it doesn't turn into pneumonia!

Wednesday, March 3, 2010
(Debbie) Karis has a little more energy since we gave up (for the moment) trying to wean down her steroids.  She doesn't have to go back to clinic for two weeks, though she's still getting bloodwork twice a week.  Last night she finished her IV antibiotics, so won't have to spend so much time hooked up to IVs.  We're grateful for the TPN because it takes the pressure off of eating — takes constant vigilance to keep from obstructing again, but so far OK. 

Angie is out of ICU but still dealing with several issues.  Ruth has an important appointment today, seeking to define whether, and if so, how to treat the cancer.  Thank you so much for your prayers.

Tuesday, February 23, 2010
(Debbie) Karis is OK, very low on energy today, perhaps because she's trying to wean down a level on the steroids.  But I'm writing to request prayer for two friends:  Angie is back in ICU with an internal bleed following a major surgery five weeks ago (she's been in the hospital ever since).  Ruth has just been diagnosed with Stage 4 kidney cancer, as she grieves the death last week of her brother and the shocking death a few weeks ago of her son.  Her sister, who lives witih her, is also fighting cancer.  How can anyone deal with so much all at once?  Only by God's grace.  Please, friends, join the battle with us for Ruth and Angie and their families.  Thank you.

Sunday, February 21, 2010
(Debbie) Karis was released from the hospital about 4:00 yesterday afternoon.  It's wonderful to be home!  Please pray that we figure out all that we can do to prevent another obstruction.  Dr. Costa thinks there's a "kink" in her intestine, caused by adhesions, that makes her easily vulnerable to block up again, and already last night we had to give her an extra dose of medication to clear her intestine.  She'll have another week on two IV antibiotics here at home, one of them twice a day, and she's to return to 7 West early Monday.  Already yesterday when she got out of the hospital she wanted to pick up her plans for the day she was hospitalized: a trip to the library and then to the pet store to test the water in her aquarium (some of her little fishies had died).  By the time we got home from those two outings she was ready to rest!  Today she can relax and enjoy her brother Dan's visit from DC.

Ash Wednesday, February 17, 2010
(Debbie) Along with telling Karis she can try some cream of wheat, Dr. Costa just told us it's possible she may be able to go home on Friday! He said they need to repeat her scope and biopsies tomorrow and if that's OK, and she can tolerate eating, she'll go home. We're enjoying a room on 11 North with a lovely view of the snow. Last night Karis walked around the unit twice, and she's been up in a chair all day today, drinking tea and eating popsicles. We're about to go for another walk. Once again—we'll be delighted to give up the hospital for Lent!!

Tuesday, February 16, 2010
(Debbie) Good news:  I just talked with Karis's nurse, who said Karis is having quite a bit of output from her ostomy!!  Hallelujah!  Dr. Costa has approved her transfer out of ICU.  She's to have her central line traded out in IR (they're hoping to put a new line in the same place over a wire) and then she'll be good to go once they have a bed for her upstairs.

Monday, February 15, 2010 ~ 4 p.m.
(David) When Deb arrived this morning at 10:30 in the ICU, Karis was sitting up in a chair, smiling and fully conscious, making complete sense!  Alleluia!  :-)   Praise God that one of the two things that was worrying us has been resolved.  The other, her intestinal block, continues unchanged, being five full days tonight.  The surgical team has been up all night and tied up all day; we’re not sure if they were doing two transplants back to back or what; but they haven’t hardly appeared in the ICU.
 
The plan is to take out Karis’s central line tomorrow since it’s infected, probably with bacteria that migrated from her blocked intestine.  The doctors’ absence makes everything move more slowly, but we hope that Karis can leave the ICU tomorrow if no new problems show up.  Pray seriously for her intestine to open up, since every day that it doesn’t raises more possibilities of bad side effects.
 
I just got back from two weeks in Bolivia and am enjoying a week at home in São Paulo with my daughter, Rachel.  She’s looking into living with another family since I’m here so little.  We’re hoping to rent the “front house” and continue using the smaller “back house” as an office and a room for me to stay when I’m here.  Pray that God would show us His will and bring the right people to rent the house.

7 a.m.
(Debbie) Day 5 . . . nothing has opened up yet, but the docs are starting to be more aggressive.  As we were laughing last night, "we've tried the Drano, now it's time for the Roto-rooter."  Last night they did a CT scan with Gastro-vu, a contrast they put in through the NG tube.  This showed a significant obstruction but they couuldn't tell from the CT how close it is to the stoma.  We were hoping that the Gastro-vu itself would help open things up, but nothing came through overnight.  This morning they did a scope through the stoma.  I just talked with Karis's nurse, who didn't tell me very much but said they expect now that things will open up.  Here's hoping . . . I'll learn more once I get the chance to talk with a doctor.

Last evening Karis woke up for a little while, and sat up in bed.  She was quite confused, but it was the most awake she's been since Thursday and certainly cheered me up!  She said some things that we didn't understand but a few statements were very clear, such as "I'm not making this up, it really hurts!" when the nurse said she couldn't have pain medicine for another half hour.  She's on a fairly light dose of pain medication, only every six hours, so we haven't understood why she's been so out of it.  Karis said she can't bear the pain so it's better to sleep.  I don't know whether that's the full explanation but it was interesting to hear her say that.  The most coherent thing we've heard from her the last couple of days has been her begging for pain medicine during the last couple of hours before she can have it again.  Last night as soon as she got her pain med she was sound asleep again within minutes. They're not giving her more pain relief for two reasons: she's been so sleepy already, and it has a side effect of slowing the gut, which is the opposite of what needs to happen.

One of the blood cultures grew gram negative rods.  She's already on antibiotics for that and her white count is almost back down to normal.  Medically, she's doing well.  The nurse told me that today they're going to get her up in a chair.  If the obstruction starts to clear and her pain eases, I think they'll let her move out of ICU up to 11 or 12 North.

Sunday, February 14, 2010
(Debbie) I keep hoping for a breakthrough (literally) so that I can give you good news, but Karis continues obstructed and in ICU. Please pray that this will resolve! It's hard to see Karis in so much pain. Thanks.

Friday, February 12, 2010 ~ 10:30 a.m.
(Debbie) Dr. Costa has just decided to transfer Karis to the ICU because her blood pressure has dropped. She'll be in bed 17.

10:20 a.m.
(Debbie) Karis was hospitalized yesterday with a bowel obstruction (11 North, room 1187). It still hasn't opened up and is extremely painful. Also, yesterday morning she fell again and has six new stitches in her knee. So we would appreciate your prayers.

Monday, February 1, 2010 ~ Happy Birthday, Karen!! Happy Honeymoon, Vera and Ryan!
(Debbie) Karis had a wonderful weekend. thoroughly enjoying every bit of the wedding celebration (and with Hannah's help, successfully walked all the way down the aisle when her turn came!). If anyone took a picture this weekend that includes Karis, please send it for her to decide about posting—thanks. She was up early this morning to accompany several friends to the airport, then had clinic, and then PT and OT, and kept going even after getting home from all that, so her stamina has definitely taken a leap forward.

Clinic overall was very good. Kareem was concerned that the edema in her body (especially her swollen legs, ankles, and feet) could easily turn into cellulitis, so he put Karis on a five-day home regimen of two-hour albumin infusions followed by IV Lasix. (We are SO grateful to be doing this at home instead of hanging out at the hospital!! We did the first of these this evening and were very glad we had no plans to go anywhere as the diuretic was very effective.) Several of her other blood tests that have been out of whack seem to be coming into line. Her white count today was all the way up to 4, so she's come out of that little twist in the rollercoaster none the worse for wear. Thank you for praying—many perfectly healthy people we know have been sick with colds and flus, so it's really quite amazing that Karis could have been so vulnerable and yet contracted no infection at all.

Karis and I have agreed that I'm going to take a break from this website for the month of February, while I try to get some other aspects of my life into better order. If something serious happens, we will be sure to post, and who knows, maybe Karis herself may decide to write something. If you don't see new news, just assume Karis is doing reasonably well with no more than the usual dozen or so things to deal with at any one time.

Just to tide you over until I come back in March, here are the dozen of the moment:
1. Pray that the joy of the Lord will be our strength and the strength of the Lord our joy.
2. Pray that Karis will continue to gain strength and balance and not fall!! (She hasn't fallen since Friday!)
3. Pray that we'll figure out why Karis is anemic and even requiring blood transfusions, despite regular Aranesp injections, and that she'll be able to use the energy she has for the things she most wants to do.
4. Pray that her white count will stabilize and that she'll be protected from infections of all kinds.
5. Pray that she will not go into rejection even though her Prograf level has bounced up and down like a yoyo.
6. Pray that her knee and her bedsore will heal completely without any complications.
7. Pray that the edema in her body will diminish, especially in her feet and legs, and that the steroids can come down another notch.
8. Pray that she not have those distressing dumping episodes when she eats and that she won't dehydrate.
9. Pray that her blood sugar and blood pressure and the coagulability of her blood will all stabilize.
10. Pray that her nutritional deficiencies will be compensated through the TPN, that her hair will start to grow back, and that she'll be able to think and articulate clearly.
11. Pray for her doctors, especially Dr. Kareem as he's back at work even while he recovers from his back injury, for Dr. Costa and Dr. Cruz as they carry an even heavier load than usual, for Bill Stein as he holds it all together, for the nurse coordinators and all of the transplant team.
12. Pray for our transplant friends who face special challenges, especially Pauline, Angie, Oujdan, Ian . . .

That should be more than enough for the next four weeks! Thank you!

A word about the new pics (see Christmas ’09): It's been a long time since Karis has let us post pictures, because she doesn't like her "chipmunk cheeks" (side effect of steroids).  She lost at least half of her hair after the pneumonia in September, probably due to some of the medications they gave her and nutritional deficiencies.  Just so you appreciate her concession to post these, in response to so many requests for new pics!

Saturday, January 30, 2010
(Debbie) We have the weekend free from 7 West which is a great gift to Karis: her dear friend Veronica Denton is getting married tomorrow and a number of Notre Dame friends have gathered.  It's so great that Karis has been well enough to enjoy this.  Yesterday the docs did everything possible so that she would stay well this weekend.  She had a blood transfusion, fluids, injections, and other medications.  Her white count, which has been extremely low (leaving her extra vulnerable to infection), is slowly creeping back toward normal.  The TPN is giving her some strength back.  We are grateful!

CEVAP
9 ~ Jan 10

 

 

Testimony

CEVAP

Mugna, 15 years old
In CEVAP for the last 6 years.

"Everything in my life started when I was 9 years old.  My grandfather had just died, my family was very shaken up, so my mother decided to move to this neighborhood.  That was when I joined CEVAP.  My siblings and I were the first kids in the project.

"In the project I learned that God comes first; I also learned that I should respect people.  The most important thing I learned is about Jesus’ life and what He went through to save us.  Jesus is a person who loves us very much and gave His own life for us.

"What I like best about CEVAP is Tia Celina, because she explains everything in our teenage lingo.  If I were asked what would have become of me had I not been a part of the project, I would answer that I don’t even want to imagine where I would be.

"I accepted Christ at the project, and on the 28th of November, 2009 I was baptized here at the Church.  Now I want to begin some sort of ministry, IBI Kids or Art and Life, and I want to tell more people about Jesus."

Prayer Thanksgiving:


• For one more year of CEVAP, thus far the Lord has helped us!

Prayer Requests:


• That God would show us His objectives and strategies for 2010 in our work with the children;
• For more passionate workers who share our vision;
• For the children and their families, that they might feel the power and love of God more and more through the project;
• For the Team and Committee of the project, that they might continue being faithful to God in this work, and that they might prove capable of displaying His glory.

"I am the vine and you are the branches. Whoever remains in me and I in him, will give forth much fruit; without me, you can do nothing." — John 15:15

Monday, January 25, 2010
(Debbie) We are excited: tomorrow we get the day off from 7 West!  Karis has been there most of every day for the last week, with a variety of little problems.  Our biggest concern right now is to keep her from injuring herself further in a fall, since her knees frequently buckle with no warning.  Her knee is healing well with no infection.  An intestinal obstruction on Saturday resolved without hospitalization, thank God.  She's felt stronger since returning to TPN and is scheduled to resume physical therapy on Thursday.

Some have asked, "What is dumping?"  Dumping is too-rapid transit through the intestine, causing large-volume diarrhea, racing heartbeat, drop in blood pressure, dizziness, and shortness of breath.  This happens to Karis after almost every meal, requiring time to rest and recover.  What she eats is often out the other end within half an hour.  That's not enough time to absorb a lot of nutrients, hence her current need for TPN.  I don't know what causes this distress, but we know other transplant patients who suffer with it as well.

Ironically, from time to time she has the opposite problem: her intestine stops functioning and nothing comes through.  Dr. Kareem thinks she has a loop of intestine semi-trapped in adhesions (scar tissue from surgeries) that can easily get "clogged" and back up.  This is a truly miserable situation, very painful.  Surgical treatment is not recommended because another surgery would just cause more adhesions.  Whoever solves the adhesion problem so often associated with bowel surgeries is destined to become a millionaire!!

Thursday, January 21, 2010
(Debbie) Karis felt a lot better today than yesterday or Tuesday, so though we spent all day at the hospital (7 West then Clinic then visiting Pauline) things went better and we're encouraged.  Dr. Kareem wants her there at 6:30 tomorrow morning for scope & biopsies (because of the dumping & running a low-grade fever) and then blood tests and infusions on 7 West.  BUT starting Saturday he's going to let her do the infusions at home, praise be to God.  These long days at the hospital are exhausting.  She's crashed out on the couch right now listening to two new CDs that friends sent in the mail (thank you Kunle and Molly!).  Had other plans for today that aren't going to happen . . .

Wednesday, January 20, 2010
(Debbie) The last couple of days have been challenging.  Karis seemed to be doing better for awhile after getting out of the hospital, but she's been dumping so much after eating that she doesn't seem to be getting much nutritional value from her food.  She's lost 7 pounds since the obstruction in Maine and has gotten more unsteady on her feet.  Yesterday morning while we were at the hospital for blood tests, she fell and split open her knee again, exactly the same place as 6 months ago.  The rest of the morning was spent at ER getting stitches, etc.  Today the decision was made for her to go back on partial TPN (12 hours/day) to try to get her over the hump nutritionally.  She has to go to the hospital for blood tests every day for awhile as her body adjusts to the TPN and she's also receiving another round of IV antibiotics so that her knee doesn't get infected as it did when she hurt it six months ago.  We've been having some trouble stabilizing her in various directions: blood pressure, blood sugar, anticoagulation therapy, hydration, etc.  We're trying very hard to care for all of this at home and keep her out of the hospital.  Please pray that we'll be successful in doing that!

Saturday, January 16, 2010
(Debbie) As we pray for the victims and the workers in Haiti, this poem by Howard Thurman seems appropriate (thank you to Rev. Stephen Carl in Westminster's The Link):

When the song of the angel is still,
When the star in the sky is gone,
When the kings and princes are home,
When the shepherds are back with their sheep,
The work of Christmas begins:
to find the lost
to heal the broken,
to feed the hungry,
to release the prisoner,
to rebuild the nations,
to bring peace among people,
to make music in the heart.

Please pray also for my brother Steve, who manages this site, who has been suffering headaches since early August.  Pray for relief and healing of whatever is causing this distress.

Karis is well, getting stronger, enjoying the freedom of home.

Wednesday, January 13, 2010
(Debbie) Praise God, Karis is home!!  What freedom and relief!!  We got home from the hospital about 8:00 last night.  Two things happened that prevented her coming home Monday: she fell (for the second time this hospitalization) and split open her recently-closed bedsore, which bled a great deal, and her electrolytes were out of whack.  She spent all day yesterday receiving infusions of magnesium, potassium, and phosphorus.  David had to say goodbye to her in the hospital but did find out before his plane took off from Houston that she was happily home.

Today we're not planning to go anywhere, just settling back in, learning some new medication routines (IV antibiotics will go 14 more days), and taking down our Christmas decorations.  We hope to set up an appointment for PT this week yet—these last ten days undid the forward progress Karis had made since the last hospitalization in December.  She needs to get stronger before she falls and hurts herself worse. Tomorrow we have to go early back to the hospital for blood work and clinic. But today is a day of R&R and savoring the pleasure of being HOME: no monitors, beeps, PA announcements of codes, call bells, midnight & 6 am vital signs, 4 am blood draws . . . aah, the sweetness of one's own bed.

Sunday, January 10, 2010
(Debbie) We seem to have guessed right about Karis going home Monday (tomorrow).  She begged Dr. Costa to let her out for Vera's wedding shower today, but after what happened in Maine, he just laughed at her.  She's been OK without supplemental oxygen this afternoon though, and that's the major hurdle to clear for going home tomorrow.  It will be nice for Dave to see that happen before he returns to Brazil Tuesday.

Friday, January 8, 2010
(Debbie) Karis escaped from ICU yesterday afternoon and is trying not to "settle in" to room 87 on 12 North because she wants to come home.  She's still dependent on oxygen and is pretty shaky on her feet, but it does seem that most of what they're doing for her now we could do at home.  She was delighted to have the NG pulled and was allowed to drink a bit of soup last night—her first nourishment since last Friday.  I expect they'll let her have soft food today.  If she handles that well, it will be one more step toward coming home. Our best guess at the moment is that she might come home Monday, which would be a great way to celebrate FOUR YEARS since her multivisceral transplant!  (The surgery started about 10:30 pm Jan. 10, 2006, but the bulk of it happened on Jan. 11.)

Wednesday, January 6, 2010 ~ 5 p.m.
(Debbie) Dr. Cruz came to check on Karis early this afternoon. He's pleased with Karis's progress. The CT scan last night showed nothing amiss and he was in on a scope and biopsies done this morning; he said it looked good. Once they receive a good report from the biopsies and are sure that she's not going into rejection, he will release Karis from the ICU to a regular room, pull the NG and let her start eating a little bit.

Dr. Cruz was absolutely sure that her PICC had to come out because of the bacteria that grew from it, so Karis was taken to Interventional Radiology at 1:30 where in a little under three hours they managed to get a line into her neck. She's back in her ICU bed but still sleeping off the sedation. I suspect she's not going to be very happy that they weren't able to just thread a new line over a wire into the same location through her arm, but at least they got one in! They've been diuresing her and she already looks less swollen than she was yesterday. Getting the fluid off will help her lungs and I expect she'll soon be able to breathe without the cannula. So everything seems to be going in the right direction.

8 a.m. The Epiphany
O God, by the leading of a star you manifested your only Son to the peoples of the earth: Lead us, who know you now by faith, to your presence, where we may see your glory face to face.
(Debbie) On this twelfth day of Christmas, we have so much to celebrate, chiefly God's Presence with us. Even when I walk through the darkest valley, I will not be afraid, for you are close beside me (Psalm 23:4, NLT). It's not that we don't feel fear, but that we can put our hands in his and let him take us through.

About 6:00 pm yesterday we got Karis settled in bed 20 of the Montefiore ICU, and Dave arrived at the hospital about an hour later after his trip from Florida. It's quite an experience to fly in a little two-prop airplane! Three hours sailing along just above the clouds mostly straight into blinding sunshine, with only bright blue sky and clouds as far as we could see in every direction, with only an occasional jetstream in the distance to signal other air traffic. Then, magically, down through the clouds and snow flurries to see the lights of the runway stretched out in front of us and a butter-soft landing more gentle than the ensuing ambulance ride through the snowy streets of Pittsburgh. I've never before watched all this from a co-pilot's seat. Karis, on her cot in the back with the nurse, didn't have nearly the same view or appreciation of our pilot's expertise. (It was too noisy for much conversation, but the pilot did say to me, "I usually tell my co-pilot, 'Don't let me wake up to find you sleeping!'")

We came back to the news that Dr. Kareem fell down the stairs in his house trying to reach his pager in the middle of the night and broke two vertebrae!! Dr. Costa is still on vacation in Brazil, so Dr. Cruz is in charge here and Dr. Bond has been coming over from Children's to help cover the bases. Karis was met in the ICU by a new transplant resident who doesn't know her and his first idea, to pull her PICC because it might have been the cause of her sepsis, left me just a little concerned . . . I think Karis is alert enough, now that she's feeling better, not to let them do anything disastrous (when we left at 10 last night she was happily chatting with a friend on her cell phone and checking her e-mail on her little laptop) but it will be good to get back in touch once visiting hours start again this morning at 10. No one has answered the ICU phone this morning so they must be really busy. Their first concrete action last night was to get her blood pressure down from 180/110 to 117/83, then while Dave and I were eating supper they whisked her off to a CT scan, but I don't know the results.

I have to brag a bit about my husband: I was surprised last night to walk into our apartment and find everything in order! With five of us leaving the same day last Wednesday, that's not how I left it. Dave worked hard before he left for Florida because he thought Karis and I would be back two days before him. What a gift!!

Please pray for Dr. Kareem's recovery and for the transplant team in his (and Dr. Costa's) absence!

Tuesday, January 5, 2010
(Debbie) The air ambulance pilot has decided I can go with Karis, though there's not space for our suitcases.  Chrissy's dad came by the hospital this morning to pick up our suitcases to ship them back to Pittsburgh for us.  We're still on track to go by ambulance to the airport to meet the plane at 1:00 pm.

The blood cultures taken yesterday haven't grown anything so the antibiotics are working.  Karis is no longer septic—her blood pressure has shot back up to the high ranges we're used to dealing with so she's starting back on blood pressure medication.  There are all kinds of issues that will need attention back in Pittsburgh that the docs here prefer to defer to the transplant team.  But overall Karis is stable and much more comfortable than she has been the last three days.  Central Maine Medical Center will always occupy a warm place in our hearts!

Monday, January 4, 2010 ~ 6 p.m.
(Debbie) Things didn't come together for Karis to fly today, but her nurse just informed me that an ambulance will take Karis to a small local airport tomorrow around noon to meet the plane that Pittsburgh will send for her. The nurse has been briefing the pilot on the IVs, oxygen, heart monitor, etc. that she'll need as she flies. I'm guessing the flight may take about 3 hours. She has a bed reserved for her in the ICU at Montefiore in Pittsburgh. I will fly separately on a regular commercial flight and still need to set that up. Dave will also fly back to Pittsburgh tomorrow from Florida so we hope to coordinate such that we can drive from the airport together in the car that he left in extended parking at the Pittsburgh airport.

In the first two hours after her intestine opened up, Karis put out two liters of liquid stool and I just emptied 350 ml more. Imagine the relief of pressure! Her tummy is still distended but not as painful as it's been. They're now giving her extra fluids IV and replacing electrolytes (magnesium & potassium), since of course she could dehydrate very quickly. You should have seen Karis's face when the doctor offered her a popsicle!! More comfortable now, she's been sleeping for the last couple of hours. We will miss the lovely window in this ICU room!

2 p.m.
(Debbie) Wonderful news! At 1:30 Karis's intestine suddenly opened up! WHAT a relief!!!

7:30 a.m.
(Debbie) It's been fun to watch the sun rise this morning.  The sky is gorgeous, blue with some fluffy white clouds to reflect the colors of the sunrise.  Whatever this day holds for us, we know that God's mercies, which are renewed every morning, go before and behind and all around us, like the lovely sunshine streaming in through Karis's window.

Karis had a good evening.  She had been trying to go without pain medication because one effect of narcotics is to slow down the intestine, and we're trying to get her intestine to clear the blockage.  But after eight hours she finally told the nurse she wasn't coping with the pain in her tummy and accepted some Dilaudid.  After that she was able to walk four times around the unit (which is built in a circle) and sit for awhile working on a jigsaw puzzle.  Again during the night she tried to go without pain medicine but again reached the point that she couldn't handle it.  She's sleeping solidly now, which itself is therapeutic.  Clinically she is stable and she's hoping they'll let her go to a regular room back in Pittsburgh rather than the ICU.

The nurse just came in and said Pittsburgh is getting organized to send a med plane or helicopter (she didn't know which) to transfer Karis back there today.  I don't yet know whether they'll take me with or whether I'll need to get a commercial flight.  I suspect the latter because the nurse asked me whether I would be driving back.  We'll take with us a deep appreciation for all of the kindness that has been shown to us here.

We're getting Christmas pictures of Karis and the family ready to post ~ will let you know soon.

Sunday, January 3, 2010 ~ 2 p.m.
(Debbie) Karis's nurse just informed us that the blood cultures are positive for gram negative rods, so the doc's decision last night to start antibiotics was a good one.  She also told us we are not going anywhere today.

1:30 p.m.
(Debbie) Last night around midnight Karis was transferred to the ICU due to tachycardia, falling blood pressure and shaking chills which seemed like they might be leading to a fever.  The doc gave her Tylenol so either that forestalled the fever or she wasn't going to get one because it never developed.  But her blood pressure continued to drop for awhile after she was in ICU so I was grateful she had the extra care.  Multiple antibiotics have been started just in case there's an infectious process going on.  Karis's tummy has still not opened up, though it's a little softer than before because of all that they've drained out through the NG tube.  They've been generous with pain medicine which has helped a lot, because her tummy is still huge and hard and very painful.

We have received excellent care here at Central Maine Medical Center in Lewiston.  Every person has been gracious, efficient, careful, and competent.  It's an unusually positive and upbeat atmosphere, which helps so much.  Karis said yesterday, "That was the best ER experience I've ever had!"  Coming from a girl who has been in and out of hospitals all her life, that's saying a lot!

The ICU too is an amazing contrast to Montefiore in Pittsburgh.  It's on the 4th floor and has big rooms and big windows.  Doesn't even feel like an ICU except for the machinery, monitors, extra nursing care, etc.  Even has a couch where they let me sleep last night!  They've actually let me stay with Karis the whole time, which is easier to do because the room is so spacious.

Last night while we were still in a regular hospital room, Chrissy and Ben came to see Karis after the wedding reception so we got to see them in their wedding finery.  They brought Karis her bouquet.  It was so sweet of them to take time, in the middle of the blizzard, to stop by to see her before going to their hotel.  We can't wait to see pictures of the wedding!  We're glad we got to have these days here, participating in the fun leading up to the wedding, even though Karis didn't get to wear her bridesmaid dress and take part in the wedding itself.

The folks here and in Pittsburgh are working on figuring out how to get Karis back there.  I'll let you know when we know something concrete.  The snow stopped for a while this morning but is coming down thick and fast once again.

Saturday, January 2, 2010
(Dave) Karis and Debbie were up all night trying to deal unsuccessfully with a bowel obstruction.  After going to the ER in Lewistown, Maine, they've been admitted, consulting the doctors in Pittsburgh.  There's a blizzard in Maine with eight inches of snow falling today and 8-12 more inches coming tomorrow!  They couldn't fly out even if the Pittsburgh doctors insisted that she needed to be back in Pittsburgh.

Karis fell getting off the airplane on Wednesday and bruised her knee, waking the next day with sharp pains in both knees that thankfully have receded.  She's been having high prograf levels (her anti-rejection med) and so had to have blood work Thursday (still extraordinarily high levels) and today.  High levels make her trembly and can bring on brain inflammation as it did in January, a year ago, putting her into mental confusion, coma and ICU.  So we really don't want that to happen.

The most immediate challenge is the bowel obstruction.  Karis isn't going to make it to Chrissy's wedding even though she's been looking forward to it for months and made mega-efforts to be in Maine since Wednesday to participate in her college roommate's wedding.  Pray that her bowel would open without putting her into the opposite problem of run-away diarrhea.  And pray that she can get back to Pittsburgh safely without any lasting consequences.  Thanks so much for praying.  We feel really helpless at times like this.

(I'm in Florida for four days visiting my 87-year-old mother, widowed a year ago.  Pray that our time together might be rich and meaningful to both of us.)

Friday, January 1, 2010 ~ Happy New Year on a gorgeous snowy day in Turner, Maine!  Wishing you all of the blessings of experiencing God's Presence with you in 2010!
(Debbie)  This is the first time I've written "2010."  I woke up this morning feeling such gratitude to God for the amazing care our family has received from you all through 2009.  Don't know where we'd be without you and I just wanted to say thanks!

I'm writing this gazing out the window at a true winter wonderland.  The household of 14 (15?) gathered friends is still asleep after seeing in the new year last night.  Karis wasn't up for the party, but did wake up long enough to say Happy New Year at midnight.

After getting up for a drive to Lewiston for lab work yesterday morning, Karis spent almost all of yesterday in bed.  In the evening I decided to give her IV fluids to run through the night, and she woke up this morning feeling much better, though she's already back asleep.  Would you pray with me that she'll be able to enjoy her bridesmaid role in Chrissy's wedding tomorrow?  And that the snowy weather won't hamper our flight (and so many others) back to Pittsburgh Sun. evening?  And for God's blessing on Chrissy and Ben?  Thanks.

Tuesday, December 29, 2009
(Debbie) Karis is well enough that she's received approval from the docs for a trip to Maine to participate in her college roommate Chrissy's wedding!  We'll fly out tomorrow morning and return late Sunday night.  Please pray that all will go well while we're gone!  Karis will be having blood tests done once while we're in Maine.

Valerie and Rachel also fly out tomorrow, to Brazil, and Dan will return to his home in DC.  Only Dave will be left to see in the New Year with Pittsburgh friends.  On New Year's Day he will fly to Florida to visit his mom.  We've had a lovely family time with all six of us together, enjoying staying HOME with Karis instead of splitting our time between home and hospital, as so often has been the case.  Soon we'll post some pics.

Warmest wishes to you for the new year!

Monday, December 21, 2009
(Debbie) Today Karis and I received a wonderful gift!  Instead of having to spend the next six mornings at 7 West, we get to do IV antifungal treatments at home!

We were at the hospital from 6:30 am until 3 pm.  First Karis was put to sleep for an enteroscopy and biopsies from the top (after they rescued her from a blood sugar of 50, consequence of fasting yesterday in preparation for the scope).  While Karis was in the recovery room, the doc who did the scope came by and told me she has a fungal infection in her esophagus.  She's had a sore throat for awhile and now we know why.  This is the first time in all of these years that she has developed this infection, which plagues so many transplant patients.

The doc also told us that the lining of her intestine, instead of being smooth, is granulous, but we will only know what that means when we get the biopsy results.  Later in clinic (after Karis received her first antifungal infusion in 7 West), Dr. Kareem told us he wasn't worried about the biopsies.  He thinks the appearance of the intestine fits with the trauma it went through in March.  That was a great relief.  We'll probably hear the biopsy results tomorrow.

Besides a couple of oral meds, Karis will receive a week of Caspofungin infusions to fight the Candida in her throat.  At first they said we'd have to go to the hospital each morning — even on Christmas!  But when I asked whether we could do it at home, Kareem said why not.  We are SO grateful!!

We came home to a sweet little tree which Dave found at a neighborhood sale.  He, Rachel, and Valerie set it up and decorated the whole apartment with Christmas things that Rachel brought from our home in Brazil.  Karis rested on the couch the rest of the evening, enjoying the loveliness.

If you don't hear from us again for the next week or so, assume all is well.  We wish you a wonderful celebration of the greatest Gift of all time, the mystery of God taking on flesh and dwelling among us.

Thursday, December 17, 2009
(Debbie) While Dave took Karis to clinic this morning, I tackled our Thanksgiving pumpkin.  In October I found a sale for $3 and of course chose the biggest, roundest, orangest pumpkin in the bin.  For weeks it brightened the front doorstep of our new apartment but when the weather turned too cold, I had to bring it inside.  It's been eying me from our kitchen floor, taking up too much space, its orangeness out of place amid the red and green of Christmas.  I needed to deal with it but hadn't mustered the time or energy.

This morning while I cut it up for cooking, I felt God's Spirit saying to me, "This pumpkin is like your future."  What . . . ???  I've been paralyzed in regard to 2010.  Every time Dave wants to talk about any kind of plans, I hit an emotional wall and put off the conversation for another time.  So he's had to make some decisions without my participation, which isn't great for either of us.

As I worked on the pumpkin, I realized that the potential it carries —for pumpkin bread and pumpkin pies— is related to what God has already done, causing the pumpkin to grow and develop and mature.  That's easy to visualize and anticipate.  But the center was filled with hundreds of seeds, speaking of a different kind of potential.  Teasing the seeds free is a bit messy.  Of course the seeds from this pumpkin will not have the chance to grow into more pumpkins, because I have already toasted and eaten some of them and am saving the rest for Dave and Karis.  But in relation to the future, as I prepared the seeds, washing with water, anointing with oil, exposing them to transformative heat, salting them, I felt an almost sacramental awe of the way Jesus used such common elements as these to communicate truth to us, who are so grounded in physicalness.  I don't see our future —Karis's future— any more clearly, but I feel more able to trust the One who communicated with us about living water, who washes us clean from the messiness of life, anointing us with the oil of gladness and healing, transforms us somehow into salt that can preserve and flavor our little corner of the world.  Whatever the future, those elements won't change.  And most of all, I felt respected in my humanness, my limitations.  Like the common pumpkin that needs someone else's hands to make it into more than itself (else it would forever sit in the way on the kitchen floor), I entrust our future to the One who so values us that he took on physicalness, lived through the indignities of babyhood, got tired, hungry, thirsty, needed to take breaks from the pressures of life . . .  Christmas.  God with us.  Even through a pumpkin.

Karis just called me from clinic.  She's receiving albumin (was a bit dehydrated) and then will be home.  A few tweaks to the meds, a breathing treatment . . .  Sunday she's to have only clear liquids in preparation for an endoscopy from the top at 6:30 Monday morning, still trying to figure out what's causing her tummy pain.  Overall, the docs are pleased with how she's doing and we're loving having her home again.

Tuesday, December 15, 2009
(Debbie) Karis is home!!!  We got home from the hospital about 7 pm, after the docs decided we can handle things outpatient.  Her first blood sugar check was 445 (normal is 80-100), and her first blood pressure check was 173/111, so we haven't quite solved all of the problems, but she's in good spirits and full of plans and projects.  She'll have the day off tomorrow and report back in to transplant clinic Thursday morning.

Saturday, December 12, 2009
(Debbie) Karis doesn't seem to be making progress very quickly and is disappointed that she won't get out of the hospital for some special events tomorrow.  Five small issues are keeping her in the hospital: high blood pressure, high blood sugar, electrolyte imbalance, ongoing dependence on oxygen, and tummy pain intense enough to still require IV pain meds.  Dr. Costa says these all need to come under better control for her to be able to come home safely.  She's enjoying a visit from her brother and has her room full of the books she's using to work on her thesis.

Thursday, December 10, 2009 ~ 6:30 p.m.   (Belated) Happy Birthday, Elaine!
(Debbie) Dave and I just got back from a quick trip to visit dear friends in Ohio and in Michigan.  We are so grateful for the wonderful companions God has given us on this adventure of life, including those who visited Karis while we were gone.

Karis is doing pretty well but not quite ready to go home from the hospital.  Drs. Kareem and Costa (how do we rate?!) just came by and said the reason she still needs oxygen is that she's a bit fluid-overloaded, and the reason her tummy is hurting is that she's partially obstructed again.  They prescribed more medicine to try to deal with both of these problems.  We were hoping they would take her off the monitor but they said her heart rate has been going down into the 40s so she still needs more vigilance.  A bit frustrating but Karis is trying to make good use of her time and do what she can to help herself get better.

Tuesday, December 8, 2009 ~ 9:13 a.m.
(Debbie) Karis just called to say her NG is out and she's being transferred from ICU upstairs to 11 North!  She was able to sleep pretty well.  I don't know whether they'll want to see her white count lower before she'll be released to come home, or whether they'll let us continue antibiotics at home.  Should know by the end of the day.

Monday, December 7, 2009 ~ 5 p.m.
(Debbie)  Dr. Costa came by and said they want to leave the NG in place overnight and if she's doing well tomorrow morning she'll be transferred back to a regular room — then maybe go home Wed.??  (They never send patients directly home from ICU.)  We tried to take her off oxygen but within a few minutes her stats fell so we had to put the cannula back on.  The biopsy results are good — no rejection!  Hurrah!!

noon
(Debbie)  Karis is doing much better.  Her tummy is softer and less painful, and her blood pressure has stabilized.  I just talked with the ICU doctor who says we may never know what caused this "paralytic ileus," but they are very happy with her progress over the last few hours. He said the scope looked good visually so we don't think she's in rejection.  Karis is comfortable enough now that she just wants to sleep.

9:30 a.m.
(Debbie) Karis is in ICU with a bowel obstruction and low blood pressure.  She was hospitalized yesterday around noon after a miserable night and morning.  IV narcotics took the edge off the pain (which she ranked 8-9 on a 0-10 scale) but when Dave and I left at 11:30 pm she still had passed nothing but gas through her stoma.  We received a call at 12:30 am saying she was being transferred to ICU with a blood pressure of 70/30.  I talked with her nurse a little after 5 and her intestine was still obstructed but she had been able to sleep some thanks to pain meds.  Just now her nurse told me a little has started coming through.  They're starting antibiotics and preparing to do an ileoscopy and biopsies.  I'm heading back over now and will learn more about what's going on.

Karis had abdominal pain in one particular spot for several days before the pain intensified and she obstructed and added the pain from the obstruction.  She reported this pain on Thursday at clinic but it was too vague to know what to do with it.

This week I had some computer glitches and Dave thinks I lost 42 e-mails, which appeared briefly in my In box and then disappeared.  If you haven't received a response to an e-mail you sent in the last three days, please send it again.  My cell phone also died so I may have missed calls before I was able to get a new phone (same number).

Thanks for your prayers for Karis.  It's hard to see her suffering again.

Monday, November 30, 2009
(Debbie) Thank you for your prayers for our Thanksgiving time away.  It was wonderful, and Karis stayed very well.  We are so thankful for the lovely reprieve we are enjoying!

Monday, November 23, 2009 ~ Happy Birthday, Mom!
(Debbie)  Warm Thanksgiving greetings to each of you.  Karis and I will be joining some of Dave's family for a 4-day celebration a couple of hours away from Pittsburgh.  We actually plan to go one day ahead (tomorrow) and return one day after (Sunday).  We won't have internet access, though we can be reached through our cell phones.  Dave will be flying in from his Portugal trip and plans to stay with us in Pittsburgh through the holidays and until Jan. 12.  I hope you will be focused on your own family celebration, but if you think of us, you can pray that Karis will stay well and not need any special interventions during the six days we plan to be away from Pittsburgh!

Six days doesn't seem long, but in the last week we've had parts of several days at the hospital, trying to keep everything in balance and dealing with an injury to Karis's replaced hip, which semi-dislocated when she was getting into a car on Sunday.  (Apparently this is not too unusual with hip replacements.)  Fortunately it popped back into place; now she just needs to tolerate some pain and a bit less mobility while the muscles heal. She refused pain medication because she wants to keep her mind clear.  Isn't it wonderfully amazing how our bodies heal?!  We have to go to the hospital again tomorrow morning for some blood tests and fine tuning before the docs will clear her to travel.  Fortunately, in case something does happen that requires more sophisticated attention than we can do for ourselves, our reunion site is only a couple of hours away .  But we hope to just enjoy the event!

One of the many, many things I am thankful for is that you are patient with me re. responses to your e-mails.  I have good intentions, but limited energy!  I do appreciate so much what you have written and the incredible support we feel in the challenges of each day.

Please continue to pray for our friend Pauline.  Thanks!

Monday, November 16, 2009
(Debbie) Karis has set a new record:  tomorrow will be a month since she got out of the hospital on Oct. 17!  The last time she was home for this long at one time was July 20—Aug. 20, 2008!  Overall, she's doing really well.  She's struggling with low energy, which may be due to reducing the steroids, though we're doing that very slowly.  Perhaps we'll have to do it even more slowly.  She also has frequent headaches, which seem to be related to high blood pressure.  She fell Friday and has gorgeous bruises on one leg and hip but no other injuries.  She's enjoyed several out-of-town guests and always wants to do more than she can actually manage.  But life at home is wonderful!

Friday, November 6, 2009 ~ Our heartfelt sympathy to the D'Clute family
(Debbie) We've reached the stage where I can say, "If you don't hear from us, Karis is doing well."  Tomorrow will be three weeks since she got out of the hospital and she's doing better each day (though she fell three times yesterday, without hurting herself—goes with trying to be more independent).  Yesterday Dr. Kareem decided to start lowering her steroid dose.  If that goes well, it should help her blood pressure to come back toward lower parameters and reduce pressure on her kidneys.  Karis has gained some weight—up to 101!  She seems to be mastering the trick of how much immodium (1/4 tsp? 1/3 tsp? 1/2?) combined with what types of foods allows her to benefit from what she eats without blocking up.  Her computer should be ready to pick up this afternoon and then she'll be able to get back to work on her thesis.  Goal: turn it in by Thanksgiving.  That will give us something extra to be thankful for!

Please continue to pray for Pauline, and for little Ricardo who will have surgery today.  Thanks.

Monday, November 2, 2009
(Debbie) Karis enjoyed a busy and happy weekend.  Last evening as we were comparing notes on plans for this week, I was overwhelmed with gratitude that she continues well, at home, full of plans and enthusiasm for life.  What a gift!

The main problem she's having is headaches from high blood pressure, which even with doubled doses of two of her four antihypertensives has not come down to normal parameters in the last few days.  We think the root cause is the high steroid dose she's on, so perhaps she'll need to start lowering that dose sooner than the docs had wanted. Karis will have blood tests done this morning but if all is well, won't have to return to clinic until Thursday. She's working hard in PT and yesterday climbed nine stairs without help — it was tough but she did it!

For those in the Pittsburgh area: we've broken out a fascinating 3000 piece jigsaw puzzle called "Life," which will eventually hang over our living room couch.  If you like puzzles, you're welcome to come over and help us!  (Call first to make sure we're home.)

We're very concerned about our friend Pauline, who has reached the limit of anti-rejection drugs.  If her biopsies today continue to show rejection, her graft may have to be removed.  Please pray for her and for her family, so far from their home in Australia.

Thursday, October 29, 2009 ~ 9 a.m.
(Debbie) We have the day off!!  What a sense of luxury and relief.  Karis has PT at 11:15 but otherwise doesn't have any medical stuff scheduled today.

Tuesday at 7 West (the hospital's short-stay infusion center) Karis was given more fluids and then we learned that her INR was 7!  So she had to have two units of fresh frozen plasma, which took all day, but when we finally left the INR was down to 2.6.  Yesterday all of her numbers were good so she didn't require any treatments.  We were able to visit some friends and left the hospital just in time for PT.  By the time we got home from PT, Karis was over-the-top exhausted and so grateful to be able to climb into bed and stay there for a good long time.  She has to check in at 7 West early tomorrow morning for blood tests to make sure she's held the ground reconquered, but we're hoping for good results and freedom from the hospital for the weekend.

Please continue to pray for our friends in the hospital!  Hans has just been released but has to do the early-morning 7 West thing every day, which is really tough.

Monday, October 26, 2009
(Debbie) All weekend we worked at hydrating Karis, and thought we were coming out well.  Blood tests this morning showed otherwise, but fortunately (!) there were no beds available at the hospital, so after spending all day there receiving fluids, Karis was released to come home.  We're to give her IV fluids through the night and then return to 7 West tomorrow to be sure we have her fluids and electrolytes back in balance.  Karis, of course, is bummed that she wasn't able to do everything she planned for today, but we're so happy she's home!  Complicating the picture was an INR of 6.3, which means that should she injure herself, she would bleed profusely.  (It was hard to stop the bleeding of her hand from her blood draw this morning.)  That too should sort itself out as she rehydrates and stops anticoagulant medications for the time being.

Several friends are occupying beds in the hospital and we ask for prayer for them: Pauline, Carissa, Oujdan, Hans . . .  all of them dealing with post-transplant complications.  Thank you!

Saturday, October 24, 2009
(Debbie) Our daily challenge is to figure out a balance for Karis between activity and rest.  She's naturally enthusiastic about seeing people and doing things, but sometimes runs out of energy mid-stream. I told someone this week it seems we actually do about a third of what we plan to do. Sometimes she needs a whole day to pull back, sleep, R&R.  Overall she's doing well, much steadier on her feet and more able to focus on tasks like reading and writing.  She hopes by next week to get back to work on finishing her thesis.

As I've been gradually catching up on e-mails, I've noticed a couple of themes that come through fairly often.  One is absolute conviction that God is going to heal Karis, accompanied sometimes by advice about how to increase our faith or suggestions that we take her to be prayed for by a certain person, or sometimes the idea that perhaps we haven't actually prayed with faith for her healing, because if we had, then obviously she wouldn't continue to suffer.  A second theme is distress that some feel about not seeing Karis healed, even though they have earnestly prayed for that healing. 

My first response is amazement that people care enough to feel conviction or distress about Karis, 26 ½ years into this pilgrimage!  So many prayers have been offered for Karis—that is a mystery I only expect to understand in Heaven.  We are daily humbled by your love and your companionship on this journey. Thank you.

My second response is that it's good for us to keep engaging God on questions and doubts that we have, keeping in mind that he is God, not us.  He's the one in charge.  We can —we do!— ask, but we don't order God around.  We don't make ourselves God's boss.  He's not our genie-in-a-bottle.  Jesus didn't say to us, "Follow me and you will be healthy, happy, and wealthy."  He did say, "In this world you will have tribulation."  I want to challenge you to read the Gospels again.  Read about Paul's life, and the other apostles.  Read Hebrews 11.  It's painful to run into the wall of God's sovereignty, when we want the safety of being in control, or at least of thinking that we are.  Believe me, I know.

Am I saying that I don't believe God can heal?  Not at all.  Am I saying that I don't believe God will heal Karis?  Not at all.  In fact, if you ask the doctors, many of them will say that Karis is a medical miracle.  But I know that's not what some of you want.  You want something spectacular, like a whole new body.  God can do that.  Absolutely.  But isn't it possible God may have other purposes to accomplish through Karis's rollercoaster?  Like friendships with people that she wouldn't even know if she wasn't in the hospital from time to time?  Is physical health and relief from physical suffering the main thing at stake here?  Is that our chief value?

God is free to do as he chooses.  If it's a matter of asking, hundreds —maybe thousands— have asked.  God is all-powerful and he loves us.  He loves Karis. She knows that profoundly, and if you know Karis, you know it too. There's nothing Karis wants more than for the people she knows to realize that each of us is as precious to God as she is.  Maybe through Karis God is trying to break down some of our categories and conditions, like "If God really loved me, he would _______________."  Maybe Karis is a living parable of God's grace.  To KNOW that you are precious to God, even when you're in a coma and literally can not lift a finger to "deserve" that love—doesn't that tell us something about grace?

And here's another thing:  Which do you think is harder, to maintain trust and confidence in God even when your life is as unpredictable and confusing and painful as Karis's, or to give in to resentment, bitterness, and self-pity?  What is the outcome of each of those choices?  Isn't that the same challenge each of us has every single day, within the variegated shape and colors of our own stresses and circumstances? Doesn't each one of us desperately need to tap into God's faithfulness that is renewed every morning, the resources he makes available today for the challenges of today?  Don't we all need to forgive ourselves and others for the past, LIVE in the present, and entrust to God our anxiety about the future?

I don't often write this way on this blog; please forgive me if I have overstepped its parameters. I do think we'll get a lot farther if we can stay a bit more humbly flexible, more dependent on God and how he chooses to act and interact with us, than if we set up our own requirements for how God must act.  The thing is, God is doing amazing things all around us all the time—let's not miss that, or miss the words of love he is always saying to us, because it doesn't look or sound like we thought it would.  Wasn't it CS Lewis who said, "Every image we form of God, he must in mercy shatter"?

I appreciate the following thoughts about doubt vs unbelief (edited by Cliff Johnson but I don't know who the original author is) sent to me by a friend.  Thank you, Howard! 
[PDF click PDF]

Tuesday, October 20, 2009 ~ Happy Birthday to my dad — I'm sure they must be celebrating it in heaven!
(Debbie) Gorgeous fall day today: think I'll take Karis to one of the nearby national parks so she can enjoy the foliage!

Yesterday Dr. Kareem told us that Karis's pneumonia was due to two organisms, not just one.  Apparently these two together are known to generate the hyper-immune response (ARDS) that almost killed Karis.  While still in ICU she was given vaccinations for both so this shouldn't happen again.  She should have had these vaccines before her multivisceral transplant; I don't know how that slipped through the cracks.

Otherwise, Karis checked out well: had a spa, injection to stimulate red blood cell production, some electrolyte adjustments, & Kareem made nine medication changes and we were done!  Karis still had enough energy to try to visit some friends at the hospital, take her computer to the shop, and go to the library before we came home — just not enough energy to read the books once we got home!  She'll start PT again tomorrow afternoon and doesn't have to report in again at the hospital until Thurs. morning.  Such a sense of freedom!!

Sunday, October 18, 2009
(Debbie) After the excitement yesterday of coming home and seeing some friends and losing the ND game in the last second (!), Karis crashed and has slept hard all night and all day today, apart from necessary wakings for meds, etc. She had actually spent very little time in our new apartment, and we did quite a bit of work on it while she was in the hospital, so it feels quite new to her.  Fortunately she seems to like the decorating and arranging that we did, and now she'll be able to make adjustments as she wishes.

Karis isn't strong enough yet to walk around alone, so I stayed home from church this morning, sorted out all the stuff we brought home from the hospital, and have also been using the time while Karis sleeps to read through e-mails from many of you —sorry I got so behind!  Thank you for your prayers and love and encouragement!  Thanks also for your questions— they help me realize what I have and haven't been communicating.  Here are a few responses, even if I don't manage to respond personally to all of your wonderful e-mails:

1. Nutrition: Karis is completely off of TPN; successfully eating!
2. Infections: All IV antibiotics have been stopped; she's taking only one antibiotic orally.
3. She still has her central line in the right arm but we were sent home without any IV meds!
4. Oral meds trivia: 19 per day at the moment, totalling 53 tablets or capsules, plus some liquids and some injections (of course this changes every time she sees a doctor)
5. Thesis: She hasn't been able to go back to work yet, in part because her computer isn't working.  Tomorrow after she checks in for blood tests at the hospital we'll go after finding out what's wrong.  She still tires very easily when she tries to do anything that requires focus, like reading or writing.
6. Pain: Karis has refused pain medication since being home.  She's determined to be narcotic-free and get her life back together.  What hurts: mainly her right hip and her tummy as she gets used to eating again.  Lungs have stopped hurting!
7. Breathing: she came home without oxygen!  Breathing OK on her own!
8. Main challenges currently:
• high blood pressure, due to steroids.  She's taking four antihypertensives, multiple times per day; plan is to start weaning steroids tomorrow.
• weakness and low energy—but wanting to do more than she can currently manage.  Tomorrow we'll go after setting up physical therapy again.  She's very anxious to see friends and catch up on what's been happening in "normal" life!

That's an amazingly short list, given what she's been through in the last six weeks!  Praise God!

Saturday, October 17, 2009 ~ Pittsburghers, please click at left
(Debbie) After a treatment this morning for "wet" lungs, Karis is coming home!!  I'm on the way to the hospital to pick her up.  She already has friends invited for lunch and plans for where to watch the ND game this afternoon!

Thursday, October 15, 2009
(Debbie) Karis was released from ICU to room 1282 (12 North) late afternoon today.  She had another blood transfusion this morning (#6) but finally seems to have stabilized, with no more bleeding since yesterday morning.  Next goal: home!

Wednesday, October 14, 2009
(Debbie) Karis called me this morning to say she was being moved up to 12 North. By the time I got here, though, that plan was cancelled because she started to bleed again, not a lot, but persistent. She had another blood transfusion this morning. The docs think she needs to stay in ICU in case they have to do another endoscopy. Right now we're just waiting to see what happens next.

Tuesday, October 13, 2009 ~ 9:30 p.m.
(Debbie) Karis is still in ICU but is ending the day well. She continued to bleed through the morning so another endoscopy was done early afternoon. They found that blood was still seeping where they had placed one of the clips last night, so another clip was placed plus an injection of epinephrine so that the vein would contract. This seems to have worked and by evening things seem to be returning to normal. Karis required 4 units of blood but seems to be stabilizing. We expect she'll get out of ICU tomorrow as soon as there's a bed upstairs for her, and then —we hope!— home on Thursday. Thank you for your prayers through one more unexpected twist of Karis's rollercoaster!

9 a.m.
(Debbie) I just talked with Karis's nurse in the ICU.  Karis is stable, but is still bleeding just a little bit from her ostomy, so Dr. Costa wants to keep her there a little longer.  He is allowing her to eat soft foods.  She's receiving another unit of blood now.  The nurse says there's no chance she'll be coming home today.

Monday, October 12, 2009 ~ 11:15 p.m.
(Debbie) I just got home from the hospital.  When the bleeding from intestine didn't stop, she was taken to the ICU this evening where they did an endoscopy, located two sources of bleeding and applied clips to stop it.  When I was finally allowed to see Karis she was resting peacefully.  She'll stay overnight in ICU to make sure everything is OK and then —I hope!— will be released to come home tomorrow.

7:45 a.m.
(Debbie) We thought Karis was going home from the hospital today, but a little problem developed as the day went on.  Karis started bleeding from her stoma, probably due to the biopsies she had this morning that apparently didn't clot.  We thought it was nothing to worry about at first, but the bleeding has increased and now it seems that she needs an intervention to find the bleeder and put a clip on it.  She'll be receiving two units of blood this evening with two more units on standby and may be transferred to ICU so that they can do the procedure right at bedside.  I'm glad we didn't go home earlier in the day and have to come back in to deal with this!  Otherwise, all is well.  Perhaps she'll be able to go home tomorrow once this is dealt with.

Sunday, October 11, 2009 ~ posted 14 Oct
(Dave) I’m at the Pittsburgh airport returning to São Paulo, hearing the shouts of loyal fans watching the Pittsburgh Steelers on TV.  Leaving one world and entering another.

Karis got a four-hour pass to leave the hospital Saturday night to participate in a house-warming celebration of our new apartment.  The party began with our inviting our 25 friends to leave the house to begin our eight-page liturgy out in the cold.  After some introductory words, our pastor (Jonathan) spoke of Jesus being at the door and knocking (at which point he knocked on our door), asking if we would open the door for him and invite him to enter.  We did so, receiving each person at the entrance and then blessing our living room as the first of a room-by-room blessing through the house, even blessing the stairs to the basement and the washer and drier area in the basement!  What an unforgettable experience, made more special by having friends who have been like Jesus for us in this city.  We felt the depth of the end of Matthew 25 in a special way, being loved and accepted by Jesus in a special way through these people who have loved “one of the least of these” —us.  :-)

I spent the morning today (Sunday) with Karis, in between the various interventions that had to be done.  We had a precious time talking about Ephesians 5.1 ­ “Be imitators of God, as His beloved children.”  Two challenging paradigms!  Having God as our standard, our rule of conduct, the measure of our thoughts.  Oh, Lord!  And to do that as a child who imitates his Daddy.  With that simplicity, joy, abandon, wonder and absolute confidence that his Dad or Mom is the most incredible person who exists.  Karis understands that much better than I do.

As we talked, I asked Karis what three attributes or characteristics of God most warmed her heart.  “First,” she said, “he is trustworthy.  He is the Great Strategist.  He plans and cares about the most diverse details of my life; I wait in suspense to see what each moment of that plan is going to reveal.  He has an abundance of goodness such that it is no problem to him to sacrifice something I consider immensely good and precious, knowing that he has something even better for me.”  For me (David) to hear that after Karis spending 20 days in the ICU and 11 more in the hospital leaves me with tears in my eyes.

Secondly, Karis is really grateful that God is a God of suffering.  He understands and participates in her suffering.

Thirdly, Karis marvels that God esteems her, looks at her as someone who has something to offer, something to do for Him.  Even though that usefulness has to be expressed principally at this time through being in a bed or sitting in a chair in a small room, she is filled with wonder that God sees that as a context in which to use her.  He values her and what she can do for him.  She is amazed at his humility, descending to be by her side, to raise her up, care for her, use her.  Loving.  Caring.  Giving of himself for her.

At that point I (David) understood better what Jesus meant when he said “Unless you become like little children, you won’t be able to enter the Kingdom of heaven.”  May I grow in my ability to be more childlike!

Sunday, October 11, 2009
(Debbie) Many thanks to those who graced our home with your presence and prayers last evening.  Special thanks to David, who cleaned the house, to Débora Wortham who came to my rescue with fabulous Brazilian refreshments, to Jonathan, who prepared and led a deeply meaningful house blessing service, and to the doctors and nurses who understood our desire that Karis be there and went the extra mile to make that possible.  We were delighted that our landlords joined us for the service!  We missed those who weren't able to come, but appreciated notes and phone messages from many of you.

Some have asked whether we bought a house here in Pittsburgh.  No, but we have rented a lovely first-floor apartment and are still overwhelmed by the generosity of so many people who helped us furnish it and who helped us move.  We are so grateful to Battle and Carol Brown who gave us refuge in their home for so many years.

Karis wasn't yet well enough to stay home but she was granted a pass for a few hours, complete with a tank of oxygen from the hospital!

Friday, October 9, 2009
(Debbie) PITTSBURGH FRIENDS: We're planning to go ahead with our house blessing tomorrow night (Sat. Oct. 10, 7:30). We hope Karis will be out of the hospital tomorrow, or at least released for a couple of hours to enjoy the event. Hope to see you there!

Wednesday, October 7, 2009 ~ 11:30 p.m.
(Debbie)  Dr. Cruz came in this morning saying Karis's blood cultures were positive again, he was pretty sure it was a line infection, and the midline had to come out; probably they would thread a new one into the same location over a wire.  Given Karis's limited access, we protested that perhaps we should have more evidence that it WAS a line infection before messing with a line that was functioning.  He insisted and that was that.  Made Karis happy by saying she could eat real food!  (That didn't actually happen until suppertime but it was great when it did!)

So, early afternoon Karis was taken off to get her midline replaced.  A l-o-o-n-g nerve-wracking 3 1/2 hours later, she came out of IR (interventional radiology), not with a new midline, but with a CENTRAL LINE in her right arm!!!!!  No one has managed to do that for years!!

As I understand the story, this IR doc didn't know Karis and didn't know this couldn't be done.  Karis said he examined the options and decided that was his best shot and just kept forcing a wire until he got it through the obstruction!  It hurt a lot and Karis was terrified that he was going to rupture her vein or do other damage.  He had a lot of trouble getting the wire to go where he wanted once it was through the obstructed area, but finally got it worked around and through the proper veins to her heart, threaded a catheter over the wire, pulled out the wire, sewed in the catheter and voilá, we have a functioning central line in a location that's not dangerous to the rest of her body (as the trans-lumbar and trans-hepatic central lines were)!  AMAZING!!!

One never knows what a day will bring forth!

7:30 a.m.
(Debbie) Karis continues to improve.  She had a CT Monday that showed her lungs "ten times better" than the last one.  She's still needing a bit of oxygen through a nasal canula, doing breathing treatments, and using the BiPap at night.  Blood cultures are no longer positive.  The fistula has not leaked at all for two days so she hopes they'll let her start eating today.  If she continues moving forward, she may be able to come home by the end of the week!

CEVAP
8 ~ 7 Oct 09

 

 

Testimony

CEVAP

Alice, 13 years old
In CEVAP for the last 5 years.

"CEVAP was one of the best things that have happened in my life. I used to be rebellious, I would pick fights with people for no reason, cursed a lot, disrespected the tios (teachers), my family and my friends. Today I’m a lot calmer. I learned that God is very important in my life because without Him I would be a nobody. I also learned that I should not let myself be taken by the evil way and many other things.
"Were I not in CEVAP, I would be doing everything wrong today. I thank God for CEVAP, and for everything He did in my life."

Aline, 13 years old
In CEVAP for the last 5 years.

"CEVAP is a work of God, because it made the difference in my life. Before I was rebellious, answered back to everyone, and fought a lot. "I was a violent girl." Now, I’m not perfect, because nobody’s perfect, but I’m a whole lot calmer, I respect people, I’ve learned that it is very important to know about the word of God. Without Him our life is nothing. I used to like to do everything alone, without anyone else and now I have learned to work in a group."

Prayer Thanksgiving:


• For the provision that He has given us;
• For the fruits that we have been harvesting.

Prayer Requests:


• For our children, that God keep them safe from the dangers and abuses to which they are subject, and call them to greater intimacy with Him;
• That God might cover us with wisdom, grace and love, that we might act for Him in each situation, in each life, and in each heart;
• For the Baptism room that we want to put together, and for the developing of a relationship between the children and the church;
• For financial provision;
• For direction for the coming year.

“But when the Holy Spirit controls our lives, He will produce in us this species of fruit:  love, joy, peace, patience, goodness, righteousness, faithfulness, gentleness and self control; against these there is no law.” — Galatians 5:22-23

Sunday, October 4, 2009
(Debbie) Dave and I got back from Laurelville in time to see Dr. Costa.  I hadn't had the chance to talk with him for about five days, and David had not yet seen him at all on this visit to Pittsburgh.  After Dr. Costa told Dave how very sick Karis had been with what he called "overwhelming sepsis," he explained a couple of things that happened while we were gone this weekend.  First, Karis has another infection in her blood; we don't know the source, but blood cultures have been persistently positive since Friday.  Just as she was tapering off the antibiotics from her pneumonia, she's had to begin a whole new set to deal with this new septicemia (gram positive this time, so hopefully easier to beat).  Maybe because of this new infection, Karis has been exhausted, and slept all day yesterday.  She didn't even watch the ND football game.

In addition, Karis has developed a fistula in her abdomen.  Back when Kari s was in severe rejection in February/March, which stripped her intestinal lining, part of her intestine was stitched to her abdominal wall to help prevent rupture of the intestine.  Now apparently a little "tunnel," called a fistula has developed through the abdominal wall, probably because of Karis's poor nutrition these last few weeks.  The worst of this for Karis is that after just two days of eating, she was put back on "nothing by mouth" to see whether the fistula will close on its own.  Today it has largely stopped leaking, so Dr. Costa decided she can cautiously try some clear liquids, but if it gets worse she has to immediately stop drinking again. 

Please pray that the fistula will close on its own.  If it doesn't, Karis will probably require a central line because of her nutritional needs.  Howsever, nothing will be done until the infection in her blood is cleared up; there's no sense contaminating a new catheter.  We are asking God that the fistula will close, so that she'll be able to eat again, and that no central line will be needed.

Today Karis is a little short of breath because she's fluid overloaded again, but in general her respiratory status is better and she's only doing BiPap one hour on/five off.  This afternoon they're going to start more aggressive diuresis again.

Dave and I are about to take Karis for a little walk—she wants to see how far she can go.

Thursday, October 1, 2009
(Debbie) Hurrah!  On this first day of a new month, Karis has a new beginning OUTSIDE the ICU!  This morning she moved to Twelve North, room 1281, phone 412-802-3212.  Once again God has spared her life.  May his perfect plan for her be accomplished.

Karis has high hopes now for sleeping better, excited that she'll start a soft diet with supper this evening, and LOVES the bright sunshine coming in through the large window in this room!  She'll also be more free to start getting out of bed and getting her strength back, because she has a portable monitor instead of being plugged into so many machines.  It's amazing how debilitating three weeks in ICU can be.

At the moment she's resting, listening for the umpteenth time to a gorgeous praise CD that Deanna sent her (thank you so much!! we both love it!), while she breathes for an hour on BiPap (she's on a rhythm of one hour BiPap alternating with three hours on just a nasal canula).

Since Rachel posted, we had a bit of turmoil over whether to try to place a new central line, since the midline in Karis's right arm had to come out.  Finally agreement was reached to use another midline (in her other arm) and wait on the central line idea for a week, to see how Karis does with eating.  The big issue is nutrition.  Karis has been on the maximum TPN that can be given through a peripheral line, but it's only one third of the calories she needs and does not include all of the nutrients that are normally part of central line TPN.  The docs are terribly worried about aspiration and that's why they haven't wanted Karis to eat.  But given her severe limitations of venous access, they finally agreed to try the eating route rather than holding out for better TPN.  Karis is happy!  She's so hungry it's hard for her to think about anything else.

Now that she's in a regular room, it will be easier for Karis to enjoy visitors.  Dave and I will be away this weekend, so if you'd like to visit, do come!

"You are the Rock in whom we trust," the CD is singing to us.  Amen!!

Wednesday, September 30, 2009
(Debbie) Karis continues to take steps forward and should be released from the ICU to a regular floor tomorrow after 20 days in ICU.  I'll fill you in on more details soon!

Monday, September 28, 2009
(Rachel) So my mom says I should write the update today, since I leave to go back to Brazil tomorrow and I might not be able to write from first-hand experience again very soon. :)  I had a great conversation with Karis this evening, interesting and "with it," sharing plans, getting advice, hearing how she is doing.  Her basic sentiment was "I'm encouraged by today."  So are we!  She's down to two liters of oxygen on a nasal canula, MUCH better than the 10L she was on just yesterday!  We did an experiment with closing off her NG for a while and it seemed to work well, so that might come out tomorrow!  She was also allowed to have tea and a hot chocolate mixture including special nutrients —a huge step up from nothing but ice chips— and her PT helped her walk around the room some for the first time in over two weeks!  At the end of the day, the doctor said she might be able to go up to 12N tomorrow!  !!!  I've been praying that she would get out of ICU before I leave at 3:30 —it would just make me feel so much better about getting on the plane— and it might actually happen!  Keep praying with me, please.

Karis says she's happy to receive calls, if she doesn't feel up to talking she just won't answer or will turn her cell phone off.

The less good news is that her midline has gotten sore and painful, a sign that it needs to come out and be replaced.  Dr. Costa really wants to try to put in a new central line, but not only do we not know if that is possible, my parents think if it is we should wait to do it until we really need it.  On the other hand, she still needs too much medication and TPN to depend solely on peripheral lines.  I do not know if another midline might be possible.

Well, I think that's it for now!  It's been a real joy seeing all of you with whom I have gotten a chance to connect during my time in Pittsburgh and I wish you all well!  I'll be back in Pitt Dec. 15-30 for Christmas vacation with my family.

Saturday, September 26, 2009
(Debbie) Karis had a good day, I think, though she's short on energy.  A blood transfusion this afternoon seemed to help.  She was able to sit in a recliner for part of the afternoon and all evening.  She hasn't eaten for 15 days and is only getting 750 calories daily of TPN, so I think that has a lot to do with it.  Food is on her mind a great deal.  It's hard to see her, once again, hungry yet unable to eat. Dr. Kareem said it's possible she'll get the NG pulled tomorrow!  I don't know whether that means she'll then get to take something orally.  The doctors are intensely concerned that she might aspirate because she's too weak to adequately protect herself should something "go down the wrong pipe."

Karis has the same lovely nurse tonight who was with her the first couple of days when things were so tough two weeks ago.  The nurse reminded us how far Karis has come from those days when it wasn't clear whether she was going to make it.

Karis is no longer on BiPap but when we left tonight she was still on 60% oxygen through the face mask (down from 80% this morning).  The plan is to try 40% tomorrow morning and if that's successful, try moving from the mask to a cannula.  It will be nice for all of us when that happens because Karis will be able to communicate so much more easily.

I asked Dr. Kareem today when she might be well enough to leave ICU and he said, "Oh, no, not yet—her lungs are still wet and she's too weak."  This whole episode has left her fragile.  It's a bit perplexing, though, to imagine how she'll get stronger within the limitations of the ICU.

Our whole family was together this weekend except Valerie, who joined us occasionally by phone from Notre Dame.  Dave arrived Friday, Dan drove over from DC this morning, and Rachel is here until Tuesday, when she will return to Brazil (it's been wonderful to have her here!).  We can't all be in the ICU with Karis at one time, but we have all been able to spend time with her. This afternoon we played Scrabble, which stretched Karis a bit past her current ability to make sense of things, but she stuck with it and came up with some amazing words that neither we nor the dictionary were familiar with!  She has been able to read a little bit to herself yesterday and today, which seems like a big step forward.

Karis is awake and alert enough now that she loves having visitors and misses us during the hours we're not allowed to be with her.  If you would like to visit, give me a call (574-339-3350).  Visiting hours are 10 am-1 pm, 3-7 pm, and 9-11 pm, although sometimes we're asked to leave for awhile even within those time slots at the nurse's discretion.  (Of course you know not to visit if you have symptoms of illness.)

Please pray for our friend Pauline, who is fighting severe rejection.  Carissa was able to leave the hospital Thursday and return home on Friday, but she continues to need our prayers.  Thank you so much.

Friday, September 25, 2009
(Debbie) Karis is doing much better!  Today she was on a regular face mask for four hours alternating with BiPap for one hour.  The most fun though was that she was awake and coherent!  What a wonderful way for her to see her dad again!  We still have a hard time understanding her through the mask, but she was able to write for us what she wanted to say.  We're encouraged!

Thursday, September 24, 2009
(Debbie) When I arrived at the hospital this morning Karis was on the verge of needing to be intubated again, and later in the day her oxygen level again dropped enough that a return to the respirator had to be considered  (this had also happened at 5 this morning).  Each time, though, she was able to rally and bring her oxygen level up enough for them to wait a while longer.  By the end of the afternoon, she was doing a little better.  She didn't wake up all day even when we tried to rouse her, and had to lie on her back with her head elevated in order to keep her stats up (which is not good for her bedsore).

I spent all day at the hospital hoping for a chance to talk with a doctor (while Rachel worked and did various errands).  I was rewarded by getting to talk with both the ICU doc and Dr. Costa.  Between them, I was able to understand the following about what seems to be happening with Karis:

She's been caught in a sort of vicious cycle.  When all this started with septic shock Friday night two weeks ago, she was given large amounts of fluid to raise her blood pressure.  The sepsis caused her kidneys to shut down and her body became severely fluid overloaded.  Her lungs still have fluid in and around them, which makes oxygenation difficult.  Since her kidneys started working again, aggressive diuresis (getting rid of extra fluid) has caused her blood to become too concentrated, and elevated sodium caused mental confusion and sedation (even though she has been given no sedatives since getting off the respirator Sunday).  The breathing problems she's been having are not due to the pneumonia nor the ARDS, which are both largely under control, but to the fluid imbalance.

There are more details, of course, like other electrolyte imbalances, but that gives you the general picture.  Dr. Costa was encouraged by her progress through the day, that she made it without having to go back on the respirator, and he believes she'll be better tomorrow, "to welcome her father," he said.

Dr. Costa was right yesterday when he said Karis wasn't ready to be released from ICU!  But it looks like this particular episode is turning in the right direction.  It would have been very disheartening to see her go back on the respirator.  She's still on BiPap, which delivers oxygen under pressure, making her breathe more deeply even when she's asleep.  Thank God that has been adequate.  I talked with her nurse a little while ago and she said Karis was waking up and responding appropriately to questions and directions.  Thank you, Lord!

Wednesday, September 23, 2009 ~ midnight
(Debbie) I just talked with Karis's nurse.  The face mask has helped: Karis's breathing has calmed down and her stats are better; everything else seems stable.  We'll see what tomorrow will bring, remembering that the Lord's mercies are renewed every morning.

11 p.m.
(Debbie)  Karis started having trouble breathing this evening and is currently back on a face mask, with the oxygen cranked up high and breathing fast.  We appreciate your prayers.

6 p.m.
(Debbie) Dr. Costa just came by to check on Karis here in the ICU.  We asked whether Karis would be going upstairs soon and he said no, she's not ready yet.  Karis asked if she could eat and he said no, she's not ready yet. We expressed concern about her very high blood pressure, despite frequent doses of antihypertensives, and he said it's probably due to the high steroid dose she's on, which they will reduce when they can, but—you guessed it—she's not ready yet.  So here we still are, don't know for how much longer.  Karis seems more "with it" today; spent quite a while sitting up in a recliner and enjoyed visitors.  She's coughing a lot, which is good.

Tuesday, September 22, 2009 ~ Our sympathy to the Brown family in the loss of Treasure
(Debbie) Karis continues in the ICU, staying awake more but confused about where she is and why and how she got there.  The main thing on her mind is going home, or going anywhere.  "Rachel, let's go!"  "Go where?"  "I'm going to take a shower" (or go to the library, or go to church, or . . .)

I asked yesterday whether she wanted to check her e-mail and she said yes, so I went online to the gmail site and then handed her the computer since I don't know her password, and she had no idea what to do.  She pushed several keys and then handed the computer back to me.  If you've written her an e-mail, it may be awhile before she'll read it.  Crocheting didn't work out so well either—Karis didn't remember how to do it and I spent at least twenty minutes untangling the yarn from her lines and tubes!  The doctors don't seem too worried about her confusion—they just say she's been through a lot and it will get better.

Karis: "I think Dad wants to get out now."
Me:  "Oh?  Where is he?"
Karis: "He's under my bed."
Me:  "Actually—he's still in Brazil.  But he'll be here on Friday!"
Karis:  "No, he's under my bed.  I can hear him snoring."
(Later)  Karis:  "Rachel, who IS that under my bed?"

She's breathing with 6L of oxygen, and the docs say that's too high for her to go to a regular room.  She's doing breathing exercises to make her cough up the gunk from her lungs.  She's not allowed to eat or drink for fear of aspiration (which the docs think could be fatal at this point), which is a great trial to Karis.  Right after the doctor leaves the room after explaining that she can have NOTHING by mouth, Karis turns to me and says "Can you get my ice chips now?"

Well, that's the status quo in this little corner of Pittsburgh, while the city prepares to receive the G20 summit.  Stay tuned for the next episode of "What will Karis do next?"

Sunday, September 20, 2009 ~ Our deepest sympathy to all of the Daly family as you grieve and celebrate the life of Dr. John Daly, who went Home Friday ~ www.DalyFam.com
(Debbie) We came in from church to find Karis OFF THE RESPIRATOR!!!!!!  Hurrah and hallelujah!!!!  They extubated her at about 11 this morning.  She's breathing well with a nasal cannula at 6 L of oxygen.  We still can't hear her talk to us because her throat is sore from the tube, but it's much easier to understand what she's trying to say!  We're hoping to be able to help her out of bed and into a reclining chair for a little while this afternoon.  She already asked for her crochet (trying to finish a baby blanket for Irene).  Oh—I just heard her voice become audible a little bit!

Several people have asked about her nutritional status.  I'm sorry I forgot to say that they've been able to give Karis some TPN through her midline catheter, 750 calories/day, at a very slow rat e of about 6 teaspoons per hour.  That seems to be working and is a lot better than nothing!  Karis still has an NG in since they want to be sure she doesn't aspirate while her lungs are healing.  I don't know how long they'll keep that in.

Karis is much more awake and alert than she was Friday, when she gave us a challenge with trying to pull her lines and tubes out.  Friday evening Dr. Costa told me that one of the antibiotics she was on can cause mental confusion, so they stopped that antibiotic and are using others in its place.  We (Dan, Rachel, and I) played Boggle with Karis and she thought of words none of the rest of us saw.  It's lovely to have her back!

We're told Karis will need to stay in the ICU at least another day to be sure she's breathing well, before she's moved up to a regular floor.  We hope that soon they'll let us take her home and finish out the antibiotic regimen at home.

Friday, September 18, 2009
(Rachel) We got home from the hospital about an hour ago and I just now remembered that my mom asked me to write an update!!

Karis is doing a little bit better over-all, although still not extubated.  She breathed on her own for another three hours today, but when they tried to put her down to 40% oxygen her stats fell.  So they'll try again tomorrow.

She was more awake and alert this afternoon then she has been so far.  She would be awake and "chatty" (writing notes, trying to speak, gesturing, nodding or shaking her head at questions) for 20 minute intervals or so and then sleep for about 20 minutes and then wake up again.  We watched a silly cartoon, read a little bit of a book, played lots of "trying to figure out what Karis is trying to communicate" games and tonight played a little bit of tic tac toe.  She got confused half-way through, though, and started drawing "x"s instead of "o"s, effectively winning the game for me.  She also asked at one point if we had been in a boat.  I told her we hadn't — she must have been dreaming.

Another time she wrote, "I need to breathe" even though her oxygen levels were excellent.  The scariest moment was around 2:30 p.m. when she got a little panicky for some reason and started trying to pull out all her tubes.  My goodness, my sister is strong!!  She successfully got the tape of her thigh that was holding her foley in place, with me trying to stop her, but when she went after her catheter I became truly determined.  Finding that route to be closed, she went at her breathing tube.  Sometime in the process, I managed to press the nurse call button, but there certainly didn't seem to be a very quick response!  We struggled for several more minutes, with Karis shaking her head violently at me and trying desperately to push me away so she could get at her lines.  Finally, I just started praying out loud: "Dear Father, please help Karis calm down and be at peace and understand that she can't pull these lines out!!" That was as far as I got, because as I started praying, Karis looked at me strangely and then quieted and the next minute the nurse came in with soft restraints for her hands, which she ended up hardly needing, as she was relatively calm the rest of the afternoon and evening.

Otherwise, the day was mostly pleasant.  Mom and I even got to eat at Chipotles and I finished up a handbook for how to use the new MAPI site, which we finally got on the air!!

Dr. Costa told us that one of the antibiotics can cause mental confusion so he has stopped that one.

Thursday, September 17, 2009 ~ 4:30 p.m.
(Debbie) The decision has been made not to extubate today. Karis breathed on her own for about three hours, but by the end she was too tired, started breathing very fast and her stats dropped. So the ventilator is helping her out again and we'll try again tomorrow.

8 a.m.
(Debbie) The ICU doc just came in and told me that Karis is doing so well that he wants to try to wean her off the ventilator today!! WOW!

Wednesday, September 16, 2009 ~ 9:30 a.m.
(Debbie) Good news! Karis has made a turn for the better! Her kidneys are working better, other body functions are improving and most importantly, she's breathing better: she's down to 5 on PEEP and 50% oxygen! Looks like she might make it through this one!

12 a.m.
(Debbie) I talked with an ICU doc Tuesday afternoon who explained a number of things to me.  He said Karis is not better, but it's the first day that she's holding her own without getting worse.  So perhaps in the next day or two we'll start to see improvement.  They stopped the sedation so Karis did wake up a little bit from time to time though it's hard for her to keep her eyes open.  She was more awake last evening than she has been since all this started, and was able to listen to her dad talk to her by phone for a couple of minutes.

Karis has ARDS, Adult Respiratory Distress Syndrome, which means that her body is responding to the pneumonia in a way that is counterproductive.  Both lungs are inflamed and swollen, and this is causing her more problems with her breathing than the actual pneumonia.  She also has a lot of fluid on board, which makes her lungs wet, but they've had to be cautious about diuresing her (getting the fluid off) because of other dynamics in her body.  I asked the ICU doc if he could give any guesstimate of how long she might have to be on the respirator and he said probably at least a week; she still has a long way to go for her lungs to heal enough to be able to breathe on her own.

Dan left mid-afternoon to head back to DC and a backlog of work that awaits him.  He was such a help and encouragement while he was here.  Rachel called and offered to come from Brazil, so she'll be arriving Thursday morning!  I'm very happy about that.  She'll be able to stay until Dave can come.

Tuesday, September 15, 2009
(Debbie) Yesterday was a bit discouraging as Karis seemed to get worse rather than better, but I just talked with her nurse and there have been some positive developments during the night.  They've been able to get some fluid off her lungs and bring the oxygen down to 70% (it was 90% when I left).  Karis is being kept sedated now so that the respirator will do all of the work of breathing for her and she can just rest.

Monday, September 14, 2009
(Debbie) Karis's nurse says she hasn't bled so far as a result of the medication they're giving her; apparently it's a steady drip.  Karis is still on 80% oxygen on the respirator but two of her blood values are better (they're doing blood tests every two hours).

Please pray that Karis's bedsore, which finally closed completely just in the last couple of weeks, doesn't re-open with all this bed time.  She was on her back a lot yesterday because of all the tests and procedures they did.

Sunday, September 13, 2009 ~ 11:30 p.m.
(Debbie)  Dr. Costa talked with me a little while ago.  The pneumonia, which was not even visible on the first x-ray at the time of admission to the ICU Fri. night, has now taken over a good part of Karis's right lung.  (So far her left lung is clear.)  They've had to increase the oxygen she's receiving through the ventilator to 80% because her ABGs (level of oxygen in the blood) have kept falling.  Dr. C also ordered a bolus (an extra dose) of the antibiotic that the cultures have shown to be most effective against the bacteria.

Apparently there's a drug (not an antibiotic) that's useful against the type of organism Karis has infecting her lungs that Dr. C wants to try; however, it can cause bleeding, so they are reinforcing Karis's coagulation factors and infusing more platelets.

Please pray:
* that the infection will respond to the antibiotics
* that the docs will have discernment about the use of this other drug; that she will not start bleeding again and that she will not form clots elsewhere in her body—especially in relation to the catheter—during the time her anticoagulation therapy is suspended
* that fighting the infection will not flip Karis over into rejection
* for Dr. Costa as he cares not only for Karis but for many other patients as well, as Dr. Kareem is traveling
* for Dave as tomorrow begins an important conference in Brazil, that God will give him grace to work effectively despite the weight of concern for Karis; for Rachel at home alone in São Paulo this week; for Valerie at Notre Dame, for Dan as he evaluates when he should return to DC in light of a huge project at work with a tight deadline.

Thank you!

3:00 p.m.
(Dave) We're delighted to find that Karis is not in rejection (her bleeding through her NG tube could have been from that).  The bleeding was probably due to a small injury due to the insertion of the NG tube; she had very low coagulation, which contributed to the bleeding.  We're also delighted that the docs were able to put in a mid-line through Karis's arm; a mid-line is better than the peripheral line through her femoral, tho not as good as a central line.  A mid-line goes half way and can be used for all meds and IV treatments; but it can't be used for TPN so Karis needs to get off the respirator so she can start eating again.  Thirdly, we're delighted that we now know what kind of pneumonia it is and the appropriate antibiotic has begun to be used.  Dr. Costa says her pneumonia is more serious than we thought, but it should start to turn around by the end of the day.  Karis's kidneys started to function today again after being shut down yesterday.

It's wonderful to have Dan there, albeit Dan and Deb hadn't seen each other yet since he got in at 2 a.m. after Deb was sleeping and Deb left before he woke up.

Saturday, September 12, 2009 ~ 8:20 p.m.
(Dave) Karis is stable on the respirator and largely without a fever though she is confirmed as having pneumonia.  Her vital signs are good and she's been sleeping on and off all day.  She's had a little blood coming out of her NG tube.  We don't know the cause of that.  She received two units of blood.  She writes messages when she wants to communicate since the respirator won't let her talk.  She's had a scope and biopsies from her ileostomy.  We should have biopsy results from that and from blood cultures tomorrow indicating what kind of infection she's fighting.  They've got her on four broad antiobiotics and one antifungal for now.  For those who might be interested, 52% of her white blood cells were "bands" indicating significant infection or stress.  So even though her white blood count wasn't very high (11,000), her bands indicate stress.

Dr. Costa has been very attentive, coming by 5 or 6 times and calling her nurse 3-4 times during the day.  Deb has been with her all day but is headed home now as Barb, a friend, takes over the "evening shift."  Our son, Dan, has just arrived back from two weeks in India and is on his way to Pittsburgh.  Thanks again for your prayers.  Given the diagnosis of pneumonia, Karis is doing remarkably well.

5:30 a.m.
(Debbie) Karis is in ICU and the decision was made a few minutes ago to insert a breathing tube and put her on a respirator.  She's now sedated and resting.  All night they've been fighting to stabilize her blood pressure-it's been as low as 60/20.  At 3 a.m. they put an arterial line into her femoral artery and were able to get an IV into her femoral vein.  It's not a central line but it's in a large vein so they're able to give her higher volume of fluids and medications.

The last few days in South Bend Karis didn't feel well and didn't get much done on her thesis.  She so wanted to turn it in before we left that she kept saying "If we stay one more day I might be able to finish," but she wasn't well enough to work..  Thursday we had to return to Pittsburgh because we were running out of the medications and supplies we had taken with us.  Karis was very disappointed, but I'm glad we came back, because if the situation that developed Friday had happened while we were still in South Bend, it would have been more complicated.

Karis actually woke up yesterday (Friday) feeling a little better than previous days in terms of energy, though the sore throat she's had for several days continued.  She went to PT and OT from 8-10 a.m., then to the hospital for blood tests, then to church for a prayer time, then home for lunch.  She kind of crashed then and spent the whole afternoon in bed, but got up to go out for dinner with friends.  A little after nine they called me to say Karis had started having shaking chills so they were bringing her home.  By ten her fever was 100.5 so I called the transplant nurse on call and was instructed to wait a half hour for them to get a room ready and then take her to the hospital.  As I was talking to the nurse, her fever climbed to 102, and I was allowed to give her Tylenol.  By the time we left for the hospital it was 103 and Karis had finally stopped shaking but was in significant pain in her throat, chest, head, and upper back.

We were shocked upon arrival at the hospital to learn that she was being admitted to ICU, but by the time we got through the admission process Karis felt like she would pass out.  I was sent to the waiting room and had to wait about an hour and a half before they let me back in to see her, and by then they were already struggling with low blood pressure, which kept getting worse through the night despite fluids and medications.  Her chest x-ray looked OK, but Karis's pain kept getting worse.  She couldn't have pain medicine because of her low blood pressure.  Shortly before 5 a.m. she started coughing a lot and her stats dropped to low 80s and high 70s and she was breathing very fast (50 times/minute).   They tried a face mask and suctioning first, but things didn't improve and she was wearing herself out breathing that fast, so they had to go to a breathing tube and respirator.

I just talked with the ICU doctor and they think she has pneumonia.  I was asked to leave while they did another chest x-ray, so don't know the results of that yet.  As you know, infection can spread very quickly in someone who is immunosuppressed.  She's already on several antibiotics while they await culture results.  It's sobering to see her sedated and on a respirator, when just a few hours ago she was relatively well, but it is nice to see her resting, her blood pressure finally stable and her breathing relaxed.  I'm grateful they've let me be with her much of the night, since they're usually very strict about visiting hours in the ICU.

CEVAP
7 ~ 9 9 09

 

 

Thanks from the CEVAP Director

We are very grateful to God for the lives of each of you who donated and prayed for CEVAP and to the Kornfield family which has contributed in so many ways to this ministry. To all of you, our extreme thanks. Know that, with your help and prayers, God has impacted the lives of our children and teenagers and we are harvesting good fruits from all of this. Currently, we have some teenagers participating effectively in the youth services of our church and drawing closer and closer to the body of Christ.

To date, 240 children have participated in the project, all of which heard the message of the cross weekly, for at least a year, explained in different ways, in terms they understand. They were able to experience the grace that one day reached us. We consider this a great victory, for we believe that all of them were transformed by what they heard and saw here and that the natural path of their lives was altered by the blood of Jesus. May the Lord of Grace continue to provide all the resources, spiritual, emotional and financial and the wisdom to care for the sheep he has given us.

And may he give each of you infinitely more than you can ask or imagine, pouring out blessings on your lives. Thank you so much.

Gisele Ribeiro
CEVAP Director

Friday, August 28, 2009 ~ Belated Happy Birthday to Ted and early to Cherilyn!
(Debbie) Please see the CEVAP entry below.

Since I wrote last we've had a bit of drama: repeated episodes of tachycardia (racing heart rate) and consequently, blood pressure bottoming out. Not comfortable and not safe, because the tachycardia would hit without warning, sometimes lasted several hours, and made Karis dizzy and vulnerable to passing out and/or falling again. The bummer from Karis's point of view was having to cancel several plans and not being able to make the progress on her thesis she had counted on before a trip to Notre Dame planned for next week. The good side was that we (stubbornly!) kept her at home rather than hospitalizing her as the doctor requested, and nothing more serious happened. (Karis is SO tired of being in the hospital that she's willing to take some calculated risks to be able to stay home.)

Tests were done yesterday which showed that the tip of her trans-hepatic catheter had advanced from the atrium of her heart (where it should be) into the ventricle, where it randomly hit the sinus node (which controls heart rhythm), sending her into tachycardia. The doctor who performed the venogram yesterday recommended immediate removal of the line, which is what Dr. Kareem wanted also, not just because of the tachycardia but because of the ever-present high risk of another blood clot or line infection. ("It's a ticking bomb," he said.) We were able to schedule Karis's Reclast infusion (to counter osteoporosis) for yesterday afternoon and she went in at 7:30 this morning for removal of the line. So she is now a free woman! ("Just don't ask me to put another central line into this girl," the IR doctor said. He also pulled me aside and told me what a privilege it had been for him to help care for Karis—what a sweet man!)

We are happy with this huge step forward, tempered by some concerns. Yesterday morning an analysis was made of Karis's peripheral veins, with the conclusion that it would be difficult for her to sustain a peripheral IV. So should she get into some kind of trouble requiring IVs (dehydration, infection, rejection . . .), she could find herself in a challenging situation. (Not that those kinds of problems ever happen to Karis . . . well, not since, hmm, last Monday . . . !)

The Karis of today, however, is so different than she was three months ago . . . or six . . . or nine . . . or twelve. Sept. 3 marks a year since she had the surgery that seemed to catapult her into an unending series of problems, and kept her in the hospital for the greater part of the year. In March, no one thought she was going to still be alive by Easter. So we are keenly aware of God's marvelous grace so clearly manifested in her life. And we know that we owe a great deal to your prayers and support.

The challenges Karis currently faces are minor in comparison to where she's been over this last year, but are real nevertheless:
1. Ongoing work to restore her strength, balance, and skills through physical and occupational therapy (NOT fall again!!!).
2. High blood pressure, related to steroids and Prograf.
3. Trying once again to wean down the steroids, more slowly this time since last week she had to bump them back up to counter symptoms of adrenal insufficiency (she can't wait to get rid of the steroid "chipmunk cheeks!").
4. Stabilize her Coumadin therapy to prevent formation of blood clots in her body.
5. Maintain her nutrition and hydration through strictly oral intake, which includes trying to manage her tendency to have too-high output through her stoma.
6. Generally stay well: a flu or cold can tip her delicate balance over into dehydration, infection, or rejection. The window of options for treating any of these is narrower than it used to be.

This is basically daily life for any post-transplant person. However, like most other transplantees that we know, Karis is so excited about life, about being able to get up and go out and do things, that she pays as little attention as possible to what's necessary to keep her going and just focuses on the going. She went straight from getting her catheter out to the library to plunge back into work on her thesis.

Wonderful news: Pauline was transplanted Tues. night/Wed. morning!! Please pray for her recovery.

CEVAP
6 ~ 28 Aug 09

 

 

Testimony

Soares

Charlene Cavalcante Soares, 13 years old
In the project for the last 5 years.

"The Project was one of the best things that have happened in my life, because were it not for God and the Project I would be like a person who thinks nothing has meaning, nothing makes sense.

"The Project has taught me many things, such as: not to judge because God is the only one who has that power in our lives, to be humble; it taught me what is right and wrong, and most of all that Jesus died for me on the cross, for all my sins and various other things.

"I like the Project because each time I am knowing more and more about Christ, I like my friends who are also part of the Project, I like the “tias” (teachers) as if they were my real “tias” (aunts). I also have a desire to attend this church, but my mother attends another, so I go with her. But I believe I will come here one day.

"I adore my godmother and I like various other things about this place. I like to play ball on the court, I like singing with tia Ester, learning English with tia Raquel (Rachel), I like to hear tia Celina talk about the Bible, I really like tia Gisele, I like the food, I like everything about the Project. The Project is very, very important to me.

"One of the things that really impacted me here at the Project was when I accepted, for the first time, Jesus Christ in my life.

"The Project is all these things to me."

Prayer Thanksgiving:


• For the new member of our team, Ester, who works with the 6 to 8 year olds, and gives music lessons to the teenagers;

Prayer Requests:


• For our children, that God keep them safe from the dangers and abuses to which they are subject, and call them to greater intimacy with Him;
• That God might cover us with wisdom, grace and love, that we might act for Him in each situation, in each life, and in each heart;
• For the Baptism room that we want to put together, and for the developing of a relationship between the children and the church;
• For financial provision.

“Go, therefore, and make disciples of all nations, baptizing them in the name of the Father, the Son, and the Holy Spirit; teaching them to keep all that I have commanded you.” — Matthew 28:19-20

Tuesday, August 25, 2009
(Debbie) Karis dehydrated on Saturday and again yesterday—but they let us give her IV fluids at home instead of putting her in the hospital!  The down side is that they don't think she's stable enough to pull the central line for at least another week.  Patience!!

Thursday, August 20, 2009
(Debbie) Karis just had a very positive clinic visit. Karis will be finished with the antibiotics by the time she needs to return to clinic on Monday.  At that time they'll do a scope and biopsies to be sure she's not in rejection, and "when"(!) those come back clear, they'll schedule removal of her central line!  Suddenly, Karis's life will become much more free and easy.  Yes!!

Please pray for our friend Carissa.  She continues losing weight and may have to go back on TPN.  Please pray for solutions to whatever is causing the weight loss.

Monday, August 17, 2009
(Debbie) Let's see . . . Thursday Karis got out of the hospital, on just 3 times/day IV antibiotics.  Friday she spent the morning at 7 West, then had PT, then went out to a movie with a friend.  Saturday we moved to our new apartment!  One little glitch: Karis woke up with hot redness about 4 inches down her leg and around the back of her knee.  So as friends arrived to help with our move, we trekked over to the hospital for awhile.  We were so happy they let her go home!  Dr. Costa consulted infectious diseases & they restarted a second antibiotic she had been on in the hospital, this one 4 times/day.  So, along with those she takes orally, her med schedule is now 6 am, 7 am, 8 am, 10 am, noon, 3 pm, 4 pm, 6 pm, 10 pm, 11 pm, and 12 pm.  It seems to be working—the knee is getting better and everything else seems to be sorting itself out as well.  Clinic this morning was very positive, and Karis doesn't have to go back until Thursday.  She has officially been taken OFF the transplant list!!!  And she's doing well without TPN!!!  And we should be off this crazy schedule in just 5 more days!

Not one to let something like meds slow her down, today Karis did one of her antibiotic infusions in the hospital lobby after clinic while waiting for a friend to pick her up to go out for lunch.  (During the "wait time" at clinic—between having her blood drawn and seeing the doctor—she hid out and worked on her thesis.) She did another IV between sessions of PT and OT this afternoon in their waiting room.  She had made plans for the evening after her 6 pm dose, but has just decided to back off a little and take a rest, since she didn't sleep at all last night.  (For my birthday, she offered to do the 11-12 pm and 6-7 am infusions so that I could sleep last night & have a better chance of fighting off a brewing cold.  It worked—I feel much better today!).  But somehow SHE didn't sleep, so it will be my turn tonight to let her rest.

We love our new apartment!  It still needs a fair bit of work and a few pieces of furniture to complete, but we had such a wonderful crew helping on Saturday that the essentials got done.  Karis has the biggest job ahead of her, sorting through the boxes of things she had in storage for this last year.  (Most of that will wait until her thesis is done.)  I need to go after getting internet access and then we'll be able to do a better job of communicating.  This apartment represents a new beginning for Karis, and so far her health is cooperating!  Thank you, Lord!

Wednesday, August 12, 2009 ~ 8 p.m. ~ Happy 31st Anniversary, Jan and Steve!!
(Debbie) Karis's leg is MUCH better!  The antibiotics are working!  Thank you for your prayers.  We expect her to be released from the hospital tomorrow, to continue IV antibiotics at home.

6 a.m.
(Debbie) Apparently Karis was just dehydrated—she felt a lot better once she had some fluid and has not gotten sicker, as she would if the bacteria had crossed into her bloodstream.  We're so grateful for that!

However, there is reason for concern, and for your prayers.  The bacteria has been identified as Pseudomonas, not an easy bug to defeat in someone who is immunosuppressed.  The infection has spread down into her ankle and foot.  When we came in this morning, the nurse marked on Karis's leg the extent of the redness at that point, and it has expanded a fair bit since then. 

Please pray that the bacteria will NOT cross into Karis's bloodstream!

Tuesday, August 11, 2009
(Dave) Karis's blood pressure bottomed out this morning, which could indicate that infection has entered the blood stream, or it could just be dehydration. She's been hospitalized and the antibiotic has been switched again. She's in good spirits despite the disappointment of having to cancel other plans. Friends delivered a queen-sized bed to Deb's and Karis's new apartment; our first new piece of furniture!  :-)

My flu symptoms are almost gone, just a cough persisting.  :-)

Monday, August 10, 2009
(Debbie) We are happy and grateful, because Karis was able to persuade Dr. Kareem to let her stay at home, rather than hospitalize her as he first proposed. Yesterday we realized that her knee, which has been slow to heal from the injury two weeks ago, is infected, and the infection is spreading down into her leg.  Once a day IV antibiotics were started at home, but when Dr. Kareem saw the leg today he switched to a different antibiotic, which will be every six hours.  When results come back from the cultures taken yesterday, we'll know better which antibiotic is indicated.

Other than the knee and ongoing high blood pressures, Karis is doing very well. When Kareem released her today, I took her straight to the library to work on her thesis until the medication arrives for her first of her every-six-hour infusions.  So far there are no signs of sepsis (infection in the bloodstream); pray that the infection will be confined to her knee/leg and not make her sick.  She's been doing well without TPN: seems to be holding her weight and hasn't dehydrated this week.

David has a bad flu; I don't know whether it's H1N1 (swine flu) but he has all the symptoms. Our son Dan and a friend of his arrive in São Paulo tomorrow to spend a week with Dave, Rachel, and Valerie, and acquaint Emily with a bit of Brazil. Please pray with us that Dan and Emily don't pick up this flu, whatever it is!

Karis and I have found an apartment here in Pittsburgh and plan to move this Saturday, Aug. 12. For a year we've been occupying the guest room of our unfailingly generous friends Battle and Carol. This was wonderful for us while Karis was in the hospital for most of nine months. Now that she's home, we're excited about having our own space—and giving Battle and Carol their space back as well. How do you say thank you to friends who have been SO kind—not only to us but to so many friends and family members as well?!
(Pittsburghers—please click on Moving Memo Board at left)

Please pray for Eudiscélia (little Ricardo's mom): she's been pretty sick and was just hospitalized with a kidney infection.  Pray also for Carissa, who has been losing weight and may have to go back on TPN.  Pray that an accurate diagnosis be made and effective treatment initiated.  It's really hard to see her not doing well.

Monday, August 3, 2009
(Debbie) "Today feels like a magical day," Karis said as we strolled around Pitt's lovely Upper Campus a few minutes ago.  Several factors contributed to that happy feeling:  gorgeous weather, the freedom of being out of the hospital (she was released Sat. afternoon), reaching her weight goal (105 lbs), even though just on every-other-day TPN, her knee feeling better . . . Karis says she's finally starting to believe that she's getting well, well enough to start making some plans for the rest of the year.  The last few days, even while in the hospital, she's been working hard on her thesis (that she still owes to Notre Dame), with the hope that we can make a trip to South Bend in a few weeks to visit Valerie and to meet with her adviser.  What a victory it will be when she finally completes this project that has been hanging over her head for the last year and a half.

At clinic this morning the decision was made to try going off of TPN, but leaving the catheter in place.  Karis has two bags of TPN left because of her hospitalization, so she will have one tonight, one Wed. night, and then be on her own, depending entirely on oral nutrition.  This is very exciting to her.  She was hoping to also knock down her steroid dose another notch, but Dr. Kareem wasn't ready to do that yet.

Karis is now on three medications to control her blood pressure, one of which also controls heart rate.  Dr. Kareem now has a theory that the tip of Karis's catheter, which is in her heart, sometimes hits her sinus node (which controls heart rate) and sets off an episode of tachycardia.  I guess we'll only know whether that's the case if the episodes stop once the catheter is removed!  It makes as much sense as any other theory right now, since we haven't been able to figure out any pattern to these episodes.

The decision was made to NOT do surgery to revise her stoma, because she's doing so well in general and we don't want to set her back.  So we're going to try yet one more strategy to make the current situation easier to live with, and hope that it works!  That decision also is contributing to Karis's feeling that she can start thinking further ahead than just today or this week.

Won't it be lovely if this sense of progress and optimism continues?!

Friday, July 31, 2009
(Debbie) Karis was hospitalized yesterday afternoon due to tachycardia (racing heartrate even while resting).  Apparently she was dehydrated a bit but even after treatment for that, has had episodes of tachycardia today.  The docs are changing some of her medications and want her to stay on a monitor in the hospital one more day to track whether the medicines are effective.  One concern about her going home with tachycardia is that it makes her dizzy and we don't want another fall.  It can cause other problems as well.  So for the moment, here we are again, admiring the view from the 12th floor of Montefiore.

Thursday, July 30, 2009 ~ Happy Birthday, Dan!!  Congratulations on achieving black belt in Kempo! (an Okinawan version of Karate)
(Debbie) We spent a good part of yesterday at the hospital.  Karis reacted badly to the antibiotic they gave her and they finally stopped it.  Then we had the great pleasure of running into our friends Sharon and Carissa Haston!  Carissa is in the hospital but Karis has been barred from visiting inpatients because of fear that she'll pick up an infection, so we're looking forward to seeing her when she's released.  Please pray for Carissa—she hasn't felt well for quite a while and has lost weight.  They're trying to figure out what's going on, in addition to gastritis from too many meds.

Karis had an appointment with an endocrinologist yesterday because her recent Dexa scan showed significant bone loss compared to a year ago (most likely due to the steroids).  Probably next week she will receive an IV infusion that we hope will at least slow down that deterioration and make her less vulnerable to breaking a bone should she fall again.  I've been sticking pretty close to Karis because she was already a bit unsteady and now that she has the brace on her leg, she walks a bit more like a drunken sailor.  We hope that by clinic on Monday the docs will say she doesn't need the brace anymore and can start doing stairs again.  Karis has once again increased her meds for high blood pressure—haven't yet figured out the magic for keeping that within more normal limits.  She's holding steady on the steroid dose at the moment but we hope for another decrease next week.  She has been switched to every-other-day TPN (!) which is a wonderful step forward, but we've been struggling some with dehydration.

Our friend Pauline is out of the hospital but still recovering from her pneumonia and line infection.  She lost a chance at transplant while in the hospital.  We're trusting God for the right timing and right organs.

Tuesday, July 28, 2009 ~ 11:30 pm
(Debbie) Today didn't turn out like we expected.  We thought we would be going to hear Lucille read poetry at Hemingway's Café.  Instead, we spent the afternoon and evening in the ER.  Karis fell and hurt her knee on the way in to PT.  I was doing errands without my cell phone (!) so it was almost an hour before I found out she needed to be picked up and taken to the hospital.  The ER folks gave her excellent care, ten stitches, IV antibiotics, a tetanus shot, a sandwich, and a leg brace so she won't bend her knee and burst the cut back open.  Unfortunately, the transplant docs say they have to see her in the morning and likely give her another dose of IV antibiotics, so there go our plans for tomorrow morning.  The ER docs don't want her climbing stairs so we're spending the night on couches at the home of friends who have a bathroom on ground floor (an unusual commodity in Pittsuburgh).

More later—I have to gather some things at Browns' for use overnight and the next several days: TPN, meds, dressings, soy milk . . .

Thursday, July 23, 2009
(Debbie) Karis is doing well.  After a lovely weekend with her dad and brother, she had another endoscopy and biopsies Monday, and we were informed today that the biopsies were better so Karis can start cutting her steroid dose, which makes her very happy!  They have also cut back a little more on her TPN, though it's still 12 hours.  She doesn't have to return to clinic until next Monday—a whole week away from the hospital!  Karis was quite sick a couple of days ago.  She resisted going to the hospital, and I was thankful that we were able to turn it around at home (dehydration, I think).  We are looking forward to attending the annual Ascension women's retreat this weekend in West Virginia.

Yesterday Karis went to Super Cuts and discovered that her hair was long enough for a donation to Locks of Love—but what is left is pretty short, especially in back!  She is now sporting a very cute bob.  It makes her look more her age.  She's been tired of people thinking she's twelve years old.

Our friend Pauline missed a chance at transplant because she's in ICU with pneumonia and perhaps a line infection.  We would appreciate your prayers for her.

Little Ricardo has moved from Children's Hospital to the Children's Institute, a rehab hospital, so that he can learn to eat.  Yes, he's seven years old and doesn't yet know how to eat.  Many efforts have been made in the past.  Please pray that this time he will be able to conquer this huge challenge.  His mom, Eudiscélia, has been suffering a great deal from pain in her teeth, a problem which has been difficult to treat even by our excellent dentist.  Please pray for her as this is exhausting, and she has a 1½-year-old to care for as well.

Tuesday, July 14, 2009
(Debbie) Karis was released from the hospital this afternoon.  She's delighted to be out and enjoying another beautiful day!  Clinic tomorrow, then we're hoping for a day off Thursday when Dave arrives.

CEVAP
5 ~ 14 July 09

Update

Rachel Kornfield

Thank you SO much all of you that have given to CEVAP!  Due to your generosity, in the month of May we collected over $2500!!!  This will make a huge difference to the project, which is currently struggling to have a sense of direction and next steps, given a variety of challenges in terms of physical space, leadership and ability to pay employees.  When I told the CEVAP director about the gift she was extremely encouraged.  If any of you would be interested in giving further to this project, on a monthly basis even, it will certainly continue to have a significant impact on the lives of these children. 

I was inspired to start translating the monthly newsletters CEVAP has been sending out since last October.  They contain some very powerful testimonies of how God has worked through the project.  Here are some words from the CEVAP kids from January:

Nathalia, 11 years old, at CEVAP since 2003
“If it weren’t for the Project, I would not know Jesus and the difference that made in my life is that everything changed, everything that was upside down he put right.”

Aretha, 14 years old, at CEVAP since 2003
“The Project makes a difference in my life because I learned to be more involved with Christ and today I recognize that without him I would be nothing. The Project provides the opportunity for us to relate to Jesus, this made me change my life and today I see things through other eyes, the eyes of Christ.”

Ana Carolina, 14 years old, at CEVAP since 2003
“The Project is important to me because it changed my life, it made me draw closer to Christ and gave me strength of will to grow in my responsibilities, made me more patient, wise, understanding, closer to Christ. For me the Project is my life.”

These are a few examples of how much God can do through us, the body of Christ, and how many good fruits we can harvest through the CEVAP Project.  You are part of this!

“Whoever welcomes one of these little children in my name welcomes me; and whoever welcomes me does not welcome me but the one who sent me.” Mark 9:37

And some current prayer requests, in Gisele’s own words:
• We thank God for the faithful donors that contribute to the maintenance of the Project;
• We ask for the children, that God would protect them from the risks and abuses to which they are subject;
• For the families, for God to work in their hearts helping them in their care for their children and to draw closer to God;
• For the challenges and decision to be made related to the future of the Project;
• For the Project board and team, that we would administer the resources with excellence.
• For financial provision.

Thank you!!!
Blessings and love,
Rachel Kornfield

Monday, July 13, 2009 ~ 12:30 pm
(Debbie) Dr. Cruz just came by. Karis is still dehydrated so they're going to keep her one more night and if the numbers are better tomorrow morning she can go home. That seems to be fine with her; she doesn't have energy for doing anything today.

7 am
(Debbie) Linda called me shortly after midnight to advise that Pauline's transplant had been cancelled: the surgeons were not happy with the quality of the organs.  What a disappointment, after a looong day of waiting.

Sunday, July 12, 2009 ~ midnight
(Dave) Karis was hospitalized today with severe intestinal blockage.  She's now unblocked, but her white blood count is up so she's beginning some strong IV antibiotics.

Her new friend from Australia, Pauline, 36 years old, is having an intestinal transplant tonight, so Debbie's planning on spending part of the night at the hospital with her mother, Linda, since they don't know anyone else in Pittsburgh.  Deb and Karis spent some time with them on Saturday and invited them to church Sunday.  They were going to go, but got the transplant call at 9 a.m. and had to be at the hospital ever since. Pray that the transplant would go well.

Pray also that Karis would get on top of the high white blood count so she can get out of the hospital.  Keep praying for her to gain weight.  She went from 100 to 102 pounds which is definitely moving in the right direction.  Over-all Karis has been doing pretty well, climbing stairs by herself now, much stronger and more secure.  Since dropping the TPN from 18 hours to 12, she's been much more stable both in her blood suger and her blood pressure.

Dave is flying up arriving Thursday to spend three days with Deb and Karis (and Dan on Saturday), before flying down to Florida for four days with his Mom, celebrating her 87th birthday, before returning to Brazil.

Monday, July 6, 2009
(Debbie) We left clinic this morning feeling very encouraged.  Dr. Kareem made a number of changes that over the next several days should help Karis balance out some of the highs and lows she's been experiencing:
1. Cut TPN from 18 hours to 12, reducing the dextrose content to about 1/3 of what it has been and eliminating lipids.  Imagine the delight of having six more hours each day free from IV's!
2. Began reducing the steroid dose.
3. Changed her blood pressure medication.
4. Discontinued one of her anticoagulants (one fewer daily injection!  yeah!)

We haven't felt the impact of these decisions yet (Karis is just coming off of another dramatic blood sugar drop), but by the end of the week we expect her to to be able to get through her days in more stable fashion.  Wednesday she's to have another scope and biopsies which we hope will support the continued decrease of her steroids.  We're going in a good direction!

Sunday, July 5, 2009
(Debbie) Our biggest challenge this week has been managing high blood sugar and blood pressure, due to the high dose of steroids Karis is taking.  So far we've been able to keep her home from the hospital, which makes us very happy, but these adventures have absorbed energy that Karis hoped to use for more productive pursuits.  We hope the next biopsies will be good enough to start lowering the steroids!  We had fun going with friends to see Pittsburgh's spectacular fireworks on the river last night.  Last year Karis was still in the hospital following her hip replacement.  What a year this has been!  Thank you for your prayers through all of the ups and downs.  God has been faithful to us, and we praise him.

I haven't had much energy left over for doing e-mail.  Thank you to those who have written expressing your love and support!  As we would say in Brazil, may God reward you.

Tuesday, June 30, 2009
(Debbie) We received a call this evening saying that Karis's biopsies from this morning are better than last Thursday's but still not "good": there is still concern that she may be heading back into rejection.  So she'll continue on high-dose steroids for the time being, but she can stay home.  Today we wondered if she was headed back to the hospital because of a bowel obstruction, but after a fairly miserable time for awhile it has started opening back up and I think she'll be OK.  We're extra grateful to still be home!

Monday, June 29, 2009
(Debbie) Dr. Kareem told us in clinic this morning that he increased Karis's steroids because of a suspicious-looking biopsy of the lower ileum last Thursday.  He ordered repeat biopsies tomorrow.  If it's normal, they will start cutting back on the steroid dose again.  High steroids result in high blood sugar, high blood pressure, and a number of other unhappy side effects.  More important, though, will be the determination of whether Karis may be going back into rejection.  We're praying for good results from the 6 a.m. test tomorrow, Tuesday!

Sunday, June 28, 2009 ~ Congratulations to Vera and Ryan!!!
(Debbie) I'm deeply grateful to each person who cared for Karis through the particular challenges that arose while I was home in Brazil for four weeks.  She seems to have stabilized (a week at home out of the hospital feels "stable"!).  My observations after a month away:
• Nine months later, the central area of her tummy incisions has finally healed!!
• Her bedsore is better, though still not closed.
• Karis is doing stairs better and generally has more stamina than when I left, although focused reading and writing are still a challenge.  She went back on a pain med patch yesterday for pain in her joints and tummy.
• She's taking steps toward becoming more self-sufficient.
• Her sense of humor is still intact.
• She did not gain weight over the last month, so hasn't been able to cut back on TPN.  This is a major concern because she's had so many problems with the trans-hepatic catheter.  Dr. Kareem is anxious for the catheter to come out; he says it's dangerous.  But there's no other place to put a catheter, and until her digestive system starts working better she still needs TPN for most of her calories.
• It's wonderful for her to be out of the hospital!!!  Yesterday was gorgeous here in Pittsburgh.  Late afternoon Karis and I went to Highland Park and though it took us an hour, with frequent rest stops on the benches so conveniently placed along the way, Karis walked all the way around the reservoir!

Tomorrow she'll go early to Clinic and have a dexa scan later.  We received a message from her nurse coordinator that Karis needed to increase her steroid dose (back up to 30) but we haven't yet learned why.  That's counterproductive for dealing with the osteoporosis concern.  Tomorrow we'll become better informed . . .

Tuesday, June 23, 2009 ~ Happy Birthday, Linda!
(Dan) I've been here since Sunday and so far things are going pretty well.  Karis slept relatively soundly Sunday night, her blood work was nearly perfect Monday morning (although she was a bit dehydrated), and we were able to get home again in time for lunch.

Yesterday evening was more chaotic with various challenges related to very high ostomy output and more dehydration, but we got it all under control and this morning things are looking good again.  We get today off from visiting the hospital, and will go back tomorrow morning for clinic.

Helping Karis with her meds and everything else is essentially a full-time job.  I haven't even turned on my own computer since arriving here, just sneaking in a little update on Carol's.  It's fun spending time with Karis, especially now that I've got the routine down and we've been through a couple little unexpected (but minor) episodes.  Fortunately her blood sugar has remained within acceptable parameters (with a little insulin nudge here and there), which was a chief concern coming out of last week.

It's a little discouraging to realize how dependent Karis continues to be on help from others for making it through her daily routine and any unexpected events, and no clear end in sight.  There are a lot of technical details, and Karis usually has to be reminded to take her meds, etc., rather than doing it herself.  She is also not strong or maneuverable enough to easily handle, for example, going downstairs to get TPN out of the fridge.  At the same time, she is lucid at all times (except when just waking up — but you could say that about me too!) and able to enjoy herself for several blocks of time a day.  Pain hasn't been too bad.

Mom gets back Thursday morning, and I think we'll be just fine from now till then (although the body is unpredictable).  I'm hoping to visit one of Pittsburgh's great museums or parks this afternoon, so we can both get some exercise.

Saturday, June 20, 2009
(David)  Karis is home.  Again!  That is to say, she went home yesterday (Friday) at the end of the afternoon and had a marvelous dinner with Battle and Carol Brown, her/our hosts.  But problems with the TPN led to low sugar crises three times during the night, the last being at the hospital at 7:30 in the morning when Karis became unconscious with level 21 of sugar.  The hospital team resolved that and kept her under observation till about 2 p.m. when she went home again.  Someone had ordered insulin put into the TPN which should never have happened.  Now that that’s resolved, we hope that Karis will recover gradually and happily at home.  Her Aunt Linda who took care of her since Janice left, leaves this afternoon.  A friend, Nancy, will take over and make use of the seventeen-page manual that Deb left as orientation about what needs to be done medically for Karis on a daily basis.  Dan, my son, arrives tomorrow afternoon to take over until Debbie arrives Thursday afternoon after her four weeks in Brazil.  After tornados, hail and torrents of rain Wednesday, Valerie finally managed to fly out of Pittsburgh Thursday, arriving Friday morning here in Brazil.  We are loving being a family of four for a change!   :-)

Thursday, June 18, 2009
(Debbie) Karis is still in the hospital; once again the docs said yesterday "maybe tomorrow."  They're treating possible adrenal insufficiency and investigating severe pain in her joints.

Stormy weather shut down the Pittsburgh airport so neither Jan nor Valerie were able to fly out; they'll try again today!

Tuesday, June 16, 2009
(Janice)  Karis was released from ICU early Saturday but continues in the hospital.  We hoped she would be released yesterday... now we're hoping for this morning!  Her cough seems to be improving, she still has an area of belly pain but not cellulitis, she is unobstructed, the blood clot was cleared and the catheter replaced along the same hepatic vein.  Prayer is appreciated as we continue to adapt her diet for maximum absorption, obstruction-avoidance, steroid-induced diabetes and allergies. She still has pain in belly and hips, and has occasions when she can't wake up for several hours (adrenal insufficiency? drug accumulation?). We hope she can safely be off antibiotics soon, as that requires Benadryl and daily trips to the hospital, even when she's out-patient.

I postponed my flight home from Saturday 13th to tomorrow 17th. It will be hard to leave but good to be back with my family; I'm grateful for their support while I've been both absent and totally absorbed here.  Debbie's and my sister Linda comes today — pray for strength for her, and wisdom for both of us as we transition.  Linda flies out Saturday; Dan arrives Sunday and will stay until Debbie's return on the 25th.  A friend Nancy will be here over the weekend to cover the gap between Linda and Dan.  Val came from Italy on the 9th and flies tomorrow to Brazil.  The sisters have enjoyed time together and Val's support has been appreciated!

Thanks for your prayers and encouragement; may God be with you!

Saturday, June 13, 2009
(Rachel) Hurray!  Karis just got out of ICU, where she's been since Monday!  She's now much more happily esconced on 12N, room 1271.  Aunt Jan will send more details when she gets a chance.

Wednesday, June 10, 2009
(Janice) I apologize for the lack of information!  We've continued spending 5-8 hrs every day with the great team at the infusion center, which seems the least conducive area of the hospital for getting anything else done (up to 4 patients, nurses, IV poles and attendants in any of their small rooms, with almost-continual attention to Karis, medical staff and procedures).  That should still leave plenty of time away from the hospital, but I've not managed it.  We also didn't want to put this report online until we could reach Debbie in Brazil.

Monday was an active day.  It wasn't so much that Karis' condition changed, but that the medical team responded more aggressively to a collection of persistent concerns:

• The nurses again struggled to get any blood return from her PICC line.

• The cough had not responded to 2 weeks of Vancomycin.

• A second obstruction in 10 days and an area of pain and redness on her belly they are tentatively callling celllulitis.

We rushed thru routine plus extra labs/infusions at 7 West so as to make a noon appt at another hospital to have testing for Karis' hip pain.  We were told to return after that to admit her to 11N.  A blood sugar drop had to be stabilized prior to the hip procedure, since she hadn't wanted to eat due to the obstruction. Other from this episode, we've been able to generally stabilize her glucose levels and are working to adapt nutrition patterns now that her intestine is more responsive, to avoid further painful obstructions.

We were in her room on 11N less than an hour late in the afternoon when she was wheeled to Radiology.  Instead of bringing her back, they took her to ICU!  They discovered a clot in her line which had to be resolved, and wanted her closely monitored during that process.

Karis has been relatively stable thru this time, enjoying a visit from Port Huron friends Monday evening and Valerie's arrival yesterday.  :)  Her blood pressure fluctuates but she is receiving good care.  Frequent trips to radiology mean she can't eat as she'd like, but she is on TPN most of the time.    The cellulitis and cough should respond to the antibiotics she's now taking; a bronchoscopy is scheduled to study the cough and they will do further tests as needed.  We assume the ICU monitoring will not be needed too much longer but are glad she is there for now.

Thank you for your prayers!  We are so grateful for God's intervention and sustenance, as well as the incredible host of caring medical staff and resources available here and the support of friends and family, especially Carol and Battle at the house.

Thursday, June 4, 2009 ~ Happy Birthday cousin Marie!
(Rachel) Karis got out of the hospital safely on Tuesday!!  Despite getting over the distention, however, she has continued to have significant pain in one part of her abdomen.  She also continues to struggle with a cough.  The initial thought that she had pneumonia seems to have been disproven —her lungs seem to be doing well— but she does have SOMEthing persistent!  She and my Aunt Jan have been in and out of the hospital daily for check-ups — please pray for them as they are in the midst of an extremely grueling routine.  Karis has her appointment with the orthopedist this afternoon to try to determine treatment for her hips, so we hope to provide you with an update about that tomorrow. 

Monday, June 1, 2009 ~ 9 p.m.
(Debbie) I just talked with Jan and Karis again.  Karis's system has opened up and she's already put out almost two liters.  They're also diuresing her in hopes of easing her cough.  The trick now is not to go too far the other way and end up with dehydration.  But Karis is feeling a lot better.

5 p.m.
(Debbie) I just talked with my sister Jan and with Karis.  Overall Karis is doing well, but she was admitted to the hospital this afternoon with a bowel obstruction.  We hope it will resolve on its own before too many more hours pass, because she is quite miserable right now and grateful for the support the hospital is able to give her.

Apart from this, Karis is quite a bit stronger than when I left, and both her blood sugar and blood pressure have become more stable.  She seems to have plateaued in terms of weight gain, so a decision will be made about whether to increase the calories in her TPN.  I believe the docs want her to gain about ten more pounds.  We know she is absorbing at least some of what she eats, because a couple of times she's been able to turn around a blood sugar drop by drinking orange juice and eating sugary foods.  Karis has been able to walk more (despite the pain in her hips) and her physical therapist is challenging her with harder exercises.  We hope this bowel obstruction is just a little bump in the road and she'll be back out of the hospital very soon.

Thursday, May 28, 2009
(Janice) Wonderful news from the scopes done Tuesday, confirmed by Dr Kareem at yesterday's clinic!  I think the best way to give you the news is thru the comments of Dr Slivka who did the upper and lower scopes:

"The esophagus was normal."

"The mucosal loss which was present in the stomach, duodenum and jejeunum has almost completely regenerated."

"Graft mucosa of the ileum was normal.  Biopsies were taken."

Recommendations:  "Await biopsy results.  Discharge patient to home."

Dr Slivka also said, "If I hadn't had Karis there on the table, I would have thought the pictures were from a totally different person than the one I did studies of last time!"  He was beaming, as was Dr Kareem.  Praise God with us!!  It was fun that Debbie got that initial report just minutes before heading to the airport for Brazil.

Dr Kareem was willing to continue dropping the steriods gradually (dropped today to 20mg x3/day). A next puzzle will be to determine what percentage of what Karis eats by mouth is being absorbed thru her digestive tract - as that increases, she can be weaned from the TPN.  I frankly can't remember whether they commented on keeping her on the transplant list or not - I will check on that.

Today Karis has an MRI of her left hip, prior to an appointment June 4 with Dr Crossett to consider a hip replacement.  That surgery can be contemplated now that another transplant is not urgent.  Karis continues to have pain in both hips when walking (stairs especially), as the AVN (avascular necrosis) is now significant in the left hip and she has regrowth of bone tissue in her right hip that don't belong with the prosthesis - one 3-4 inch bone spur and several jagged places where bone tissue is growing directly out of the prosthesis (no contact with her own bones at all!).  I think her hardworking body got the message to regenerate, and these bone cells are trying to cooperate!  I am praying that God might resolve this without additional surgery on that hip.

Please pray:

• Karis has had an intense cough for the past week.  Doctors have finally agreed it isn't aspiration pneumonia, which is good, but they don't like it or understand why it didn't respond to antibiotics. Musinex was prescribed yesterday, so we're hopeful.

• Sleep is an issue: coughing, needing to get up at night due to the constant influx of TPN fluids, needing to sleep inclined (to prevent the aspiration) but still having bedsore pain is awkward and less restful, and daily early morning trips to lab/clinic/infusions wear away at Karis' chance for sustained sleep.  Yesterday she got a good nap in the afternoon and felt much restored.

• Pain control (hips and right foot) so she can progress with healing and physical therapy.

Praise God with us for His intervention with the regeneration of lining tissue!  Thank you for your prayers!

Sunday, May 24, 2009
(Debbie) Tomorrow will be two weeks since Karis got out of the hospital!  (She didn't actually have to stay overnight last Sunday night, Rachel—sorry for the confusion about that.)  Karis is doing well overall but started with a cold a few days ago which apparently has turned into pneumonia, and of course she doesn't feel very well.  So we're back to daily visits to 7 West for IV antibiotics, which so far takes the whole morning each day.  We had two days at Glade Spring that were a marvelous change of pace and the furthest Karis has gone afield for quite some time.

People have been asking what Karis's status is in regard to transplant and whether her intestine and stomach are healing.  I don't know.  She's to have another endoscopy and biopsies Tues. morning, so I hope to hear an initial impression before I travel that afternoon, and we should hear the full story a day or two after that.  My sister Jan will be here with Karis until June 13th, so she's the one you'll be hearing from during the next couple of weeks (unless Karis herself decides to write).  I'm scheduled to arrive back in Pittsburgh on June 25th.  Please pray for Karis and for all of her caretakers during this month that I'm away!

I've also received questions about Larry and Ricardo.  Both are now out of the hospital, recuperating at home!!  Thank you for your prayers for them.

Thursday, May 21, 2009
(Rachel) Its been a while since we updated!  Sorry about that!  Here’s a summary of whats going on as I understand it, although my mom may need to make some further clarifications later:

Karis has indeed managed to go into clinic only every other day, with the exception of last Sunday night when Karis got dehydrated and had to spend the night at the hospital.  Thankfully, she got out again Monday after clinic.  Tuesday she saw an orthopedist who identified an abnormal bone growth on Karis’ right hip.  This explains the pain she has been having.  He also x-rayed her left hip, discovering that it is worse, and ordered an MRI for more details that will happen next week.  He was not the same orthopedist who did Karis’ hip replacement, however, and so was unable to recommend treatment.  She has an appointment with that orthopedist for June 4.

Over-all, Karis has been gaining strength and weight.  Yesterday I talked to her at the end of the day and she described spending from 6:00 am to 1:30 at the hospital for clinic and blood tests, followed by an hour of PT and 45 minutes “just sitting in the sun” (sounds delightful, considering the long weeks of cold weather as well as in the hospital).  Then my mom picked her up and they headed to the airport to pick up my Aunt Jan, who will be taking care of Karis’ during the first couple weeks of my mom’s time in Brazil (which I am looking forward to immensely!).  Thankfully, the doctors gave Karis permission to go with A. Jan and Mom out to Glade Spring (the country home of some wonderful friends of ours) for a couple days for a change of scenery and some time away from hospital-ing!  I am praying that it will be a real time of refreshment and am so glad they got to go!!!  My A. Karen, who lives in Hershey, PA, planned to join them for the day today.  They will probably be back tomorrow night and then A. Jan has three days to get the hang of Karis’ care (with the help of a 17 page manual!) before my mom leaves for Brazil Tues. night.

About CEVAP, I have heard that many of you have given generously!  Thank you!  We will only have concrete totals after the end of the month, when I get my update from OC, but will let you know when we do!  Meanwhile, if you are thinking about giving, know that it will make a significant difference to this wonderful ministry!

Friday, May 15, 2009
(Debbie) Happy and busy describe these last days for us.  We've spent each morning at the hospital, but Karis is doing so well they let us have today off.  We're aiming for going to 7 West only every other day if she continues stable.  We're starting to get a rhythm to her care, though random surprise events keep us on our toes—no emergency trips to the hospital, but a number of calls asking what we do about this or that.  Karis's right hip (where she had the hip replacement) has been hurting a lot, so we have an appointment with an orthopedist for next Tuesday.

Getting enough rest has been the biggest challenge, because there are so many things Karis wants to do and because her sleep is interrupted at least a couple of times each night.  Everything is joy, everything—even a trip to the grocery store—a delightful rediscovery, to be savored and treasured.  (You would laugh, as others did, to see her running into things with the electric cart at the supermarket, just because she's looking at everything but where she's going!)

Today, for example, she wants to visit Eudiscélia and Ricardo, then PT, then Arabic Club at the library, then a shower (since she can't do that while TPN is running), then small group from church (which she has not once been able to attend, since signing up for it last August!).  By the time we wrap her up to protect the catheter, and then change all her dressings, even a shower is a bit of a production and has to be scheduled in.

In between times, such as sitting around waiting for blood test results at the hospital, Karis has been back hard at work on her thesis that she still owes to Notre Dame.  She says that her mind feels clear for the first time in many months.  The pain patch she's using apparently doesn't "mess with her mind," as IV narcotics do.  Thank you, Dr. Ayyash!

Prayer requests:
1. Protection from infection, especially her catheter.
2. Regulation of blood sugar, blood pressure, and fluid balance.
3. Scheduling of protected rest periods.
4. Figuring out what's going on with her hip.
5. Healing of her stomach and small bowel so she won't need another transplant.

Please pray too for the family of a wonderful 29-yr-old, Clayton, who died suddenly last week after a long hard battle with Crohn's disease.  They live in Rio de Janeiro, Brazil.

Many people have asked what's happening with CEVAP.  Rachel is trying to find that out today, and Karis will try to prepare another post about CEVAP next week.  Many thanks to you who have contributed and prayed!

Tuesday, May 12, 2009 ~ 5:30 a.m.
(Debbie) Karis is HOME!!!!  We pulled away from the hospital at 4:15 yesterday afternoon, and have been too busy since then to let you know.  In a few minutes I need to wake Karis for a trek back to 7 West for blood tests and possibly IV infusions, depending on what the blood tests show.  But the rest of the day she'll be free!!!  It's been nine weeks since Karis slept in her own bed.

She'll really feel free mid-afternoon when she starts into her six hours off of TPN, free of the pump and backpack that go with her the other eighteen hours of the day.  We've made a start at unpacking and resettling but were both too tired to do it all last evening.  Our first energy had to go into outpatient PT, sorting out meds, getting the glucometer working again, remembering how to use the CADD pump . . .  This is actually simple home care compared with what we did in 2005, but it still requires some organization.

Please pray that she can stay home, get strong, and as she says, "have a life."

Sunday, May 10, 2009 ~ HAPPY MOTHER'S DAY!!
(Debbie) Karis is doing well, and we now hope she'll be able to come home tomorrow.  We never did unpack her things, just rummaged around for what we've needed.  Apart from a semi-obstructive episode Sat. night, which put her back into NPO (nothing by mouth) status for awhile then progressed to liquids today, she's had a good weekend.  Dan was here & they took several walks, both inside and outside of the hospital.  She enjoyed all of her visitors.  Karis hopes they'll let her eat again tomorrow.  She needs to figure out better how much she can eat without overstressing her system so that it shuts down and makes her miserable. A side effect of the steroids is that Karis always feels very hungry, even though her caloric needs are being met by the TPN (and we don't actually know whether she absorbs much or anything from what she eats).

Karis hasn't had any more episodes of hypoglycemia.  Likely what happened Friday was a reaction to coming off of IV corticosteroids (to distinguish them from the steroids used by athletes) in preparation for going home.  That's encouraging because it means there was a specific cause, not a more chronic problem.  As we've seen this weekend, she's normally able to maintain her blood sugar levels within good limits.  Today she had a trial run of being off TPN for six hours (what a great sense of freedom!), and handled that without any problem.

I need to correct something from my last post.  Sugars are not absorbed in the stomach, but rather in the small intestine.  And sugars are not the easiest thing for us to absorb: alcohol is.  Sorry for the misinformation.  The relevant point as relates to Karis is that the damaged portions of her intestine are not absorbing well, so she was not able to restore her blood sugar level the way people normally can.  We'll be sure to have another way of raising her blood sugar available in case we need it at home, but after seeing how stable she's been the last two days, I'm really not expecting this to be a problem (despite how frightening it seemed initially!).

Please keep praying for Larry (in ICU following transplant) and Ricardo (adjusting to having a trach).  Thanks!

Friday, May 8, 2009 ~ Midnight  GO PENS!!
(Debbie) God protected Karis today, praise his holy name!  She almost came home from the hospital, and if she had, I hate to think what could have happened.

Here's the story (a bit long, so do with it as you wish):

Karis called at 7 this morning, waking me up (because I had spent a couple of hours with her at the hospital in the middle of the night—but that's another story).  Karis was very excited, because on early morning rounds, Dr. Kareem had decided she could be discharged!  She would have to go to 7 West every day for early-morning blood tests and IV infusions, but she could be home the rest of the time.

The day was spent figuring out the details, arranging home TPN, etc.  By mid-afternoon, we were ready to walk out, with discharge papers signed, everything packed up, home supplies already on their way to being delivered, etc.  BUT someone realized Karis hadn't had her monthly Pentamidine treatment (which prevents a type of pneumonia transplant patients are vulnerable to).  "Let's go ahead and do it now, so you won't have to worry about arranging it from home."  Bummer, ANOTHER delay . . . oh well, what's a couple more hours after 8 1/2 weeks and most of the last 8 months?

We settled in to wait for the medication and the respiratory therapist to reach the floor.  After a while, Karis said, "Mom, I'm feeling really tired.  I think I'll take a nap while we wait."  She snuggled back into bed, but soon was feeling restless and jittery, and wanting something to eat.  Before long, she said, "Mom, something is wrong with my head.  Even though I'm lying here I feel really dizzy.  I think I might pass out."  Her vital signs were fine but when we checked her blood sugar, it was 40!  (That's critically low.)  No wonder she was feeling so strange.

Well, the thing to do with low blood sugar is to drink juice, eat crackers or hard candy, anything to get sugar into the blood stream quickly.  Karis did all that, but at the next check 15 minutes later, her blood sugar was 35.  She stuffed more sugary products down her throat.  42.  More juice, two non-dairy ice cream bars, a popsicle, more candy . . .  45.  By then Karis told us she was blacking out.  Upon the nurse's urgent call, a doctor came immediately and ordered a big syringe of glucose to be pushed directly into her veins, stopped her TPN (which contained a low dose of insulin), and replaced it with a dextrose IV.

Within minutes, Karis's eyes suddenly brightened and she said "Wow, my brain just came back!"  However, she was exhausted, and once another finger prick verified that her blood sugar had returned to normal range, she fell into a heavy sleep.  Going home had lost its immediate appeal. And there were suddenly a series of other issues to figure out.

So . . . what if we had gone home, instead of staying for the Pentamidine treatment?  (She did eventually get that, in and around her sugar orgy.)  I can imagine how it would have gone.  I would have taken Karis home, and there would have been the excitement of the initial settling back in.  Then, when Karis reached the point of "Mom, I'm really tired.  I think I'll take a nap," I would have said, "OK, while you nap, I'll run over to the pharmacy with these prescriptions."  (One of the scripts was for test strips for Karis's glucometer, which we hadn't used for so long that the test strips were a couple of years out of date.  Even if I had stayed home, I wouldn't yet have had a reliable way to test her blood sugar, much less any way to treat it once the oral route proved unworkable!)  Even if I HAD figured out what was going on, and gotten her back to the hospital, would treatment have reached her in time to prevent slipping into a coma?  Thank God, we'll never know.  I certainly hope we'll never have to test this particular hypothesis.

So, what have we learned, apart from the greatness of God's mercies?  It's not all sorted out yet, but one thing we now know is that Karis is not absorbing sugar through her stomach or upper intestine. Sugar is the simplest thing for the stomach to absorb, so if that's not working, nothing else is—at least until lower down in the more healthy parts of her intestine.  (That reminds me to say that the endoscopy Monday showed Karis's stomach and duodenum looking worse, though regeneration continues in the lower jejeunum.)  That's a bit freaky, given that it removes from us the normal way of dealing with low blood sugar.  We can always give insulin to bring down high blood sugar.  But how can we handle low blood sugar at home?  I don't know the answer to that yet.  The docs don't think it's safe for us to push sugar into her veins at home.

It's freaky too because the plan for coming home was to "cycle" Karis's TPN, 18 hours on and 6 hours off.  As long as she's on TPN, she has sugar flowing directly into her veins.  But if she can't absorb sugar orally, how would we prevent a dramatic fall in her blood sugar when she's off of TPN?  Until the experience this afternoon, we didn't know this would be a problem!  It may be that she'll have to stay on TPN 24/7, as she's been all this time in the hospital.  Certainly we can't cycle her at home until we've seen in the hospital that this can work.

WHY did her blood sugar drop so dramatically even while she was on TPN?  How can we prevent it happening again?

For all of these reasons, Karis did not come home today and likely won't tomorrow either.  Her hospital stuff is still sitting there all packed up, until we know what's happening next.  We're disappointed, yes—but so grateful that someone thought of her Pentamidine treatment and thereby delayed her coming home, so that the crisis happened THERE instead of here.

Well, my short night last night is catching up with me, so we'll sleep (barring another middle-of-the-night crisis) and start over again tomorrow—a new day which, if Karis has anything to say about it, will not include sugar.  After the orgy today, she doesn't want ever to eat sugar again.

I think we will only fully know in heaven what your prayers have accomplished in Karis's life.  Today, I have no doubt that they were important!

Wednesday, May 6, 2009
(Debbie) The docs say Karis won't come home this week.  They're baffled about her extremely high blood pressure.  She can't eat or drink because they're concerned about causing another intestinal bleed while her pressure is so high.  Pray that God will give insight as to what is causing this.  Thanks!

Tuesday, May 5, 2009
(Debbie) Karis was released from ICU late this afternoon, feeling much better than when she arrived there. She is back on 12 North, room 1280, phone # 412 802-3185.

Monday, May 4, 2009 ~ 10:20 a.m. ~ Happy Birthday, Peter—we did remember yesterday!!
(Debbie) So, to try to defuse concern over my earlier posting . . .

Karis's intestine obstructed yesterday and became extremely distended and painful, enough that neither she nor I slept last night. The docs didn't want to give her pain medicine because it could have made the situation worse. (Karis had to bite a washcloth to keep from screaming from the intense waves of pain, and hey, she's a pro at pain. It was a l-o-n-g night.) They had decided to wait on her endoscopy until later in the week, but because of this acute situation decided to go ahead with the scope this morning in case it would give insight as to what has caused the obstruction. Since Karis was so distended and miserable, they decided to use general anesthesia with a breathing tube to make sure she didn't aspirate.

Turned out that was a good decision, because after draining a LOT from her tummy that wasn't going anywhere with her intestine shut down, when Dr. Slivka did the first biopsy, it started spurting blood. They got it stopped by inserting three clips, but were concerned enough to not do the rest of the biopsies and decided to send her to ICU until they're sure the bleeding has stopped. We hope it will just be overnight, and that tomorrow (her birthday!) she'll be transferred back upstairs. As happened last time, the doctor who did the endoscopy (Dr. Slivka this time) thought her stomach, duodenum, and jejeunum looked terrible, but I don't know yet what the transplant team thinks. I believe one of them was in on the endoscopy and may have a different perspective.

Some other issues the last few days:
1. High blood pressure, don't know why. This is unusual for Karis. She has required several doses of Lopressor to bring it back closer to normal, but it's still high.
2. Her right hip (the one that was replaced in July) has become increasingly painful, to the point that it's difficult for her to walk. It is NOT out of place. I believe an orthopedist will be examining it sometime soon.
3. Until the obstruction, Karis has enjoyed eating a soft diet, but it's not clear that she's absorbing much. She's requiring high doses of oral meds to keep blood levels appropriate (for example, Prograf). The docs say it's important for her to eat, though, in order to feed the intestine itself, whether or not she absorbs much into the rest of her body. I suspect we will be postponing birthday cake a day or two until she recovers from the obstruction. At that time, though (we'll let you know), she would love for you to come by, if you can, to share a piece with her!

8 a.m.
(Debbie) Karis had a rough night and was taken to ICU this morning. More details later.

Also, Larry was taken to the OR for liver transplant a couple of hours ago. Appreciate your prayers for him and for his family!

CEVAP
4 ~ 2 May 09

What We Can Do

Karis Kornfield

CEVAP is in imminent danger of being shut down in June.

It is currently run from our church building, which is a hodgepodge cement structure which needs to be torn down and reconstructed in order to adequately space the ministries it serves. There is nowhere to house CEVAP in the meantime, nor are there funds to rent a place. It has been so frustrating to be unable to be with people I love so much and concretely serve them. But then I realized that even from my hospital bed in Pittsburgh, there is something I can do. This is why I am appealing to you.

I hope to help raise money either to rent a building for CEVAP (about $525/month) or to buy a permanent community center, which might cost about $90,000. We’ll see what God does! If God touches your heart to give even a small amount, I know that God will honor and multiply your generosity, out of love for the children CEVAP is caring for now and will care for in the future. Even if you can only offer $10 or $15, or a few cents from a Sunday School class, you will bless both CEVAP and me.

CEVAP 4

If you would like to participate in helping CEVAP continue functioning past June, you can make a tax-deductible donation on-line through my sister Rachel’s mission board at www.OneChallenge.org, by going to that site and pressing “donate” in the left-hand column (or pressing the donate button at the end of this page). If you would like to give monthly, the first option is best (OCExpress Automatic Giving). Just put “Rachel Kornfield (CEVAP)” under “Name” in the “Donation Details” section. If you would like to give a one-time gift, you can do so by credit card by choosing the second link, once again including “Rachel Kornfield (CEVAP)” under Name.

For one-time or monthly gifts, you can also fill out checks to OC International, including a note that says the proceeds are to go to Rachel Kornfield (CEVAP), and send them to:

          OC International
          PO Box 36900
          Colorado Springs, CO 80936-6900

The money will be transferred to Brazil and deposited in the CEVAP account. (For legal and proper accounting purposes, the Rachel Kornfield (CEVAP) designation is necessary, as that is how the ministry project account is set up.)

I will be supplying on my site more information, stories, pictures and testimonies from the kids themselves. I hope God will touch you with love for these children, just as he has touched me.

DONATE

CEVAP
3 ~ 1 May 09

A Little About the Brazilian Education System

Karis Kornfield

The São Paulo public school system works in shifts, using the same classroom space:

         
7 
 —
11
   a.m.
         
11 
 —
3
  
         
3 
 —
7
   p.m.
         
7 
 —
11
  

The classes are large, often 50 students with a single teacher. My friends would sometimes come to the door during the time they should have been in school because the teachers were on strike again, or their teacher simply had not shown up for class. In a study recently published by the Brazilian equivalent of the New York Times (Estado de São Paulo), one third of the children in 4th grade does not know the content of the 1st.

The “school reinforcement” CEVAP provides touches on a very great injustice in the education system, in that only those who can afford to send their children to private schools or tutors have very much chance of getting into public universities. There is a bottleneck of youth who spend years trying and trying again to pass the competitive entrance exam. Those who have been on their roofs flying their kites or in the streets using wadded-up socks as soccer balls or at intersections trying to sell candy and roses to those foolish enough to stop at the lights, or in overcrowded underdisciplined classrooms with unmotivated teachers, have little chance for a better future.

It is painful for me to speak this way of my beloved country, to attempt to stir up pity or indignation in you, to give you a sense of Brazil’s warts. This sort of focus on needs is part of a whole distorted attitude between the Northern Hemisphere and the Southern, which I do not want to be a part of perpetuating.

At the same time, there is a genuine way to impact the situation in my own neighborhood. There is already a lot of good being done by members of the community, but they are desperately in need of funds or they will have to close down.

CEVAP
2 ~ 30 Apr 09

C E V A P

Karis Kornfield

One of our friends from church had a house cobbled together a few streets into the favela near our home in São Paulo. Nina originally opened her garage for an afternoon meeting once a week for children, using Sunday school materials. A Bible Club. We had had one, ourselves, out of our home for several years. I presented my first strums of the guitar there.

I volunteered at Nina’s Bible Club throughout high school. The kids I taught are nearly all members of our church now, growing adults with good jobs, some married. One of the highlights of my time in Brazil last Christmas was seeing them (the ones who hadn’t become missionaries) and how well they were doing.

Nina’s Bible Club expanded until it burst the seams of her house; they built on another room, and quickly had too many children for that. They moved to the church grounds, where they could make use of the soccer court, Sunday school classrooms, kitchen. Eventually, they partnered with Compassion International, becoming a program that runs three days a week. We now provide two good meals a day to the 110 children who attend, as well as sports, Bible teaching and worship, and what we call “reforço escolar,” which literally translated means “school reinforcement.” My sister Rachel currently volunteers with the program, teaching English to three avid teenagers.

CEVAP 2

This project is called CEVAP, an acronym for “Centro de Valorização da Pessoa” (in English: “center for valuing personhood,” or “center for adding value to the person”). It meets some very real and urgent needs in the community it serves, and tomorrow I hope to give you a little bit of context in which to appreciate the importance of this sort of project for the future of the Brazilian nation.

CEVAP 3

Wednesday, April 29, 2009 ~ and please see CEVAP below . . .
(Debbie) Yesterday morning Karis had another scope and biopsies through her stoma.  Dr. Kandil said that visually her ileum looks good.  We should find out today or Thursday what the biopsies show.

However, Dr. Costa was back yesterday (we didn't see him at all last week) and told us more about the endoscopy/biopsy results from last week.  They were not as positive as we had understood from Dr. Cruz. Apparently her stomach looks worse, the duodenum has not improved, and in the jejeunum there was perhaps 10-15% improvement.  He wants to repeat the endoscopy from the top next week, and if there is not more significant improvement they will assume she should accept organs should they become available.  Because of the high risks of infection, obstruction, and dehydration, he doesn't want Karis to go home from the hospital at least until the endoscopy results are back next week.

Please pray with us that there will be significant restoration of the jejeunum, duodenum and stomach in the next few days!!  It's very difficult for us to contemplate going through another transplant.  Even more than that, though, we have been so excited to think that God is doing something unique and special in restoring Karis's intestine that will bring him glory.  The talk with Dr. Costa yesterday was confusing to us in that sense.  We want God to be honored through this situation!

It's become increasingly frustrating for Karis to wake up every morning and find herself still in the hospital.  She doesn't want any more talk about going home—she just wants to be surprised with discharge papers when the time comes.  It's too discouraging to get her hopes up and then be disappointed time after time.

Karis has not had fever for the last two days, and nothing yet has grown from the cultures.  We don't know what caused the high fever episode Sat. night.  A TPA treatment successfully re-opened her catheter, so it is now giving blood return again. If the blood cultures continue negative, we can probably back off of some of the antibiotics, which would be great from our point of view.  Besides the TPN, she has other IV medications, either antibiotics, antifungals, antivirals, electrolyte replacements or blood products occupying her second IV port 24/7.  Her TPN now includes a very expensive amino acid which the docs hope will stimulate regeneration in her organs (she's also taking it orally in powder form).  Karis will have another blood transfusion tonight.

For the next few days, Karis's site will be dedicated to the project she and Rachel have been working on (see below).  It's been terrific for Karis to realize there's something she can do from her hospital bed.  If you have thought about sending Karis a card or something for her birthday, she would be delighted if instead you would lovingly consider the needs of CEVAP.

God is at work.  Pray that we can understand our part in what he is doing, even in Montefiore Hospital.

CEVAP
1 ~ 29 Apr 09

What Makes Me Angry

Karis Kornfield

Have you ever seen the movie “City of God”? It made me angry—the kind of anger you don’t even notice at first, that boils up finally into hot tears. Why? Because there was such a very familiar taste to it.

I grew up in São Paulo, Brazil, surrounded by the favela (urban slum). During high school sometimes I would stop on my way from classes and cautiously sit on the curb with the kids to tell them the stories they asked for. At first they asked for money, but quickly understood that I didn’t have any. I stepped across open sewage lines to get to friends’ homes. There, they would be proud to be building the second room onto the house with seven people in it, yet the most generous people one could ever meet.

CEVAP 01


This is the specific place where I grew up and the sorts of people we as a family invested in and knew—the wealthy of Brazil lead a completely different, sophisticated life, of which we only had snapshots, glances. Brazil is considered one of the most unequal countries in the world.

Ever since middle school I’ve had dreams of investing significantly in these children. Many of them are worked like little adults or neglected except for the four hours a day they spend in school. But my life has taken a few unexpected twists—again and again I have been thwarted in my plans and projects. I can’t be in Brazil right now, perhaps never. I’m very excited to share with you, however, a way that I might serve them even from here in Pittsburgh. More about this on tomorrow’s posting.

Sunday, April 26, 2009
(Debbie) Karis ran a low-grade fever and didn't feel well for three days, but yesterday morning her temperature was normal again.  However, she had an obstructive episode overnight Friday which we're still dealing with (probably too much Immodium, trying to get her diarrhea under control).  It's tricky to find the right amount of anti-diarrhea medicine without stopping her system completely.

Her potassium went too high so they stopped the TPN yesterday.  She had two hours free from the IV pole!!  We went for a lovely wheelchair walk outdoors. While I was enjoying the budding leaves and flowers, Karis said, "I wish I could stop all of the people to tell them how beautiful they are."

Early evening Karis spiked a high fever, and a few hours later her blood pressure dropped.  A doc from ICU was called in to help but with a bit of drama they were able to stabilize her on 12 North.  During the night they were not able to get any blood return from her catheter in order to do cultures.  We're concerned, of course, that it may be a line infection.  More antibiotics were started.

This morning so far she is stable and hasn't had more fever.  She's sleeping off the drama of the night.

(Steve, Debbie's brother) Thank you for your prayer support through my bypass surgery, and to my daughter Becky who posted here the last 3 weeks!

Thursday, April 23, 2009 ~ 9 am
(Debbie) Karis woke up with a fever this morning, so she may not be going home as soon as we hoped.

Wednesday, April 22, 2009 ~ Happy Earth Day!
(Debbie) Dr. Kareem just came by—we hadn't seen him for a couple of weeks. He said that to encourage him, his staff begins their report to him each day with "Karis is doing better!"

We've been wondering since yesterday what the endoscopy showed. The biopsy results aren't back yet, but visually through the scope, the lower ileum now looks normal! The doctor who did the scope thought the stomach, duodenum, and jejeunum looked terrible, but he hadn't seen the previous endoscopies so had no point of comparison. From the transplant team's perspective, the upper endoscopy is actually much better than before--the mucosa is regenerating!! Dr. Kareem was full of cautions not to get too excited and optimistic too quickly, but clearly we're moving in the right direction.

Dr. Kareem liberalized Karis's diet to small amounts of soft food--very exciting, since she's been feeling so hungry! He says food will actually stimulate the cells to regenerate. But she can only eat out of bed and is not supposed to lie down for two hours after she eats something. The docs are very concerned that she might aspirate and develop another pneumonia.

Karis is running a low fever today (probably because they messed with her intestine yesterday), so the decision about going home has been put off until tomorrow. By then they'll have the biopsy results as well.

Today Karis practiced on the stairway with the physical therapist and did a total of twelve steps, in several small groupings. That's another important re-conquest to work toward for going home, since we live on the second floor (third from street level). Of course, once she's home Karis will be doing outpatient physical therapy to continue getting stronger.

Despite Dr. Kareem's cautions, we're excited! Praise God with us for doing what the docs had thought impossible!

Monday, April 20, 2009 ~ Happy Birthday, Carol! (Saturday) and Rachel! (yesterday)
(Debbie) Please pray for Carol; she's fighting a nasty cough that has come and gone all winter.

Karis continues doing well, surprising everyone with her progress each day. Tomorrow afternoon she is scheduled for an endoscopy and biopsies from the top. If they reflect the positive changes in her symptoms, I think she may be home by the end of the week! Over the last few days she's been taken off of monitors, oxygen, NG tube and Foley, and her blood tests have normalized, even her white count. Now when she walks all she has to worry about is the IV pole. Today she walked all the way across the bridge to Presby, rested awhile, and then walked all the way back! She has progressed from ice chips through clear liquids to full liquids and has handled all of that well.

When not at the hospital, I've been working on getting Karis's room ready for her to come home, since home TPN, IV antibiotics, etc. will involve an inundation of medical equipment and supplies. I bought a mini-fridge for her room to keep her TPN and medications that require refrigeration and am trying to clear out as much as I can to make room for what will be coming in.

My brother Steve went home from the hospital Friday evening. He still has a long recuperation ahead; Elaine is taking off work to care for him the first week, but we're so thankful for the progress he's made.

Thursday, April 16, 2009
(Debbie) Today is a celebration day: Karis got her NG tube out!!!! Her smile is as wide as the world!

AND, she and I got to take a wheelchair-walk outside in the bright sunshine.

Everyone is urging caution, she still has a long way to go, etc., etc., but all we can see is how far she's already come! Hallelujah!!

Please pray again for our friend Larry, whom you've prayed for before: he just got out of ICU and has joined us here on 12 North. He needs a liver/kidney transplant soon. (Larry is brother-in-law to Carol, whose hospitality we enjoy here in Pittsburgh.)

Ricardo and Eudiscélia are trying to adjust to his having a trach. Please pray that soon his throat will heal and he'll be able to get off the respirator.

My brother Steve is still in the hospital due to fluid in his lungs. Apparently this is not unusual after open-heart surgery but we appreciate your prayers for him.

Tuesday, April 14, 2009 ~ 11:00 pm
(Debbie) Something is definitely changing!! Today Karis ate a popsicle and a while later, we saw the color come through her ostomy drainage tube! This is the first time we've been aware that something has traveled from her stomach all the way through her intestine! Karis says she feels like her system is functioning again! And she's hungry!! She intends to ask tomorrow morning whether they can do a trial of leaving her NG tube out after they do the endoscopy. We are VERY curious what the endoscopy will show tomorrow!!

Tuesday, April 14, 2009 ~ Happy Birthday, Jessica! (just a bit late . . .)
(Debbie) Dan came from DC to spend Easter weekend with us, and had the idea Saturday of taking Karis outside into the bright sunshine. Her nurse supplied a wheelchair, we disconnected everything we could, bundled her up, and took her for a long walk, her first time outdoors in five weeks. Dan pushed the wheelchair, I pushed the IV pole, and Dave carried ice chips (which Karis sucks constantly) and supervised. :-) Dave re-injured his back last Tuesday so is more "ginger" again, but he called me last night from Houston to say the first leg of his trip back to São Paulo went well. In a couple more hours he should be home with Rachel.

Karis has made good progress in the last few days: she's off the monitor, off of oxygen, and has a bit more energy. She managed to get out of bed and into the recliner by herself yesterday, and walked around the unit with me last night, stopping only once to rest. A few days ago she had to rest every ten yards or so. Everyone comments that she looks like a different person than she did a week ago. Yesterday too the bleeding from her ostomy stopped! She had a catch-up blood transfusion last night, but this must be a good sign. Her big treat yesterday was being allowed--twice!--to eat a popsicle instead of just ice chips!

The plan is to do scopes and biopsies again tomorrow. The docs are intrigued and curious about the regeneration going on her intestine, which they didn't think was possible. So though last Friday (the 10th) Karis was officially "listed" for re-transplant, m-a-y-b-e the one she has might get well! Many people have told us they are praying for this!

I asked the dr. yesterday what needs to change for Karis to be able to come home. There are several issues: her high white count persists despite all of the antibiotics, she's not "safe" yet (still a high risk for falling), still needs the NG tube on suction, a couple other things. But she's made steady progress over the last week, so I think it won't be long! My brother Steve got out of ICU Saturday and will probably go home soon. Little Ricardo is better, but will probably be trached today because they haven't been able to wean him from the respirator.

Thursday, April 9, 2009 ~ Welcome to the world, Ellia Ann! (first daughter of my nephew Kevin born April 6!)
(Debbie) My niece Becky will be posting updates until my brother Steve recuperates from his heart surgery. Many thanks, Becky!

Steve had a heart attack Saturday morning after the last post Friday the 3rd. Today they did six bypasses! I didn't know such a thing was possible! I appreciate your prayers for my big bro!

Karis has had some challenges this week, mostly with her lungs and another round of confusion and sleepiness, but she's doing better. Dr. Cruz said today she looks like a different person from the one he saw Monday, when he wondered if she was headed back to the ICU. She has responded to the antibiotics, has gained some weight and is feeling stronger. A scope and biopsies of the ileum were done Tuesday, which showed a lot of regeneration going on. We're a little concerned because there's some blood coming out of her stoma again. But her pain is better; she's cut her pain medication almost in half.

We grieve with all of Pittsburgh over the deaths of three police officers last week. The memorial service today was very moving. As we follow Jesus through this week, here's a challenging poem by Amy Carmichael.

From prayer that asks that I may be
Sheltered from winds that beat on Thee,
From fearing when I should aspire,
From faltering when I should climb higher,
From silken self, O Captain, free
Thy soldier who would follow Thee.

From subtle love of softening things,
From easy choices, weakenings,
Not thus are spirits fortified,
Not this way went the Crucified,
From all that dims Thy Calvary,
O Lamb of God, deliver me.

Give me the love that leads the way,
The faith that nothing can dismay,The hope no disappointments tire,
The passion that will burn like fire.Let me not sink to be a clod:
Make me Thy fuel, Flame of God.

Friday, April 3, 2009
(Debbie) Karis had an endoscopy of her stomach, duodenum, and jejeunum this morning. They didn't scope from below into her ileum; I don't know why. Dr. Costa just stopped by quickly on his way to something else to say that Karis's duodenum and upper jejeunum are still completely denuded but lower down in the jejeunum there is some recovery going on. This was not expected and he doesn't know what it might mean for the rest of the damaged area (they don't have experience with this much damage). So, he says, we'll repeat the endoscopy in 7 days or so and see what is happening. Meanwhile we're not losing time, because the process continues to get her onto the transplant list. He sees it as two tracks: one, continuing to treat her supportively and prophylactically, and the other, listing her for transplant. We'll see what the biopsy results show tomorrow.

I asked him how soon realistically he could imagine Karis going home. He said the soonest possible might be in ten days or so. She still has an elevated white count (despite adding another antibiotic to the mix), still requiring oxygen to keep her stats up, still using a high dose of IV pain medication, still not strong enough to get around at home (although she did walk a little bit yesterday with the physical therapists!!). She received a blood transfusion during the night so perhaps later this afternoon, when the pain eases from the endoscopy she'll feel up to getting out of bed for a bit.

Since the pool of multivisceral transplant experience is so shallow (both in numbers of patients and years of survival), anything the doctors learn from one patient benefits the rest. That does encourage us!

Wednesday, April 1, 2009
(Debbie) This is the day Dave was originally scheduled to arrive in Pittsburgh. Instead, he had an early-morning MRI and an afternoon chat with a neurosurgeon who confirmed that he has a moderate-to-large herniated disk between L4 and L5. He does not need surgery, unless he doesn't improve over the next 4-6 weeks. But the chance of re-injury is high, so it was worth going through the testing and the doctor thing to impress on Dave the need to take care of himself. Dave is armed with a list of ways to do that, and a clear sense of what may await him if he doesn't, so things should go well. No lifting weight or jogging for a full month AFTER he last feels pain--now that will be a challenge! His long trip back to São Paulo on April 13th, and then to Bolivia a couple of days later, will be another challenge.

Let's see . . . what shall I say about Karis. I missed seeing the docs today because I was with Dave at his consult, and we didn't see them yesterday because they were in the OR all day. What I've heard is that they want to repeat endoscopies and biopsies Friday, and after that will decide whether to put in a G-tube in place of her NG, and evaluate what else needs to happen before she can go home. There are still several hoops to jump through for re-listing her on the multivisceral transplant list; these are gradually getting accomplished.

Karis has had more severe tummy pain the last couple of days and a dramatic turnaround in terms of intestinal function: a lot now coming out of her ostomy and little out of her NG. The docs don't seem to know whether that's good or bad, since what's coming out of the stoma is to varying degrees bloody. Karis's bedsore is worse, despite all of our efforts, and a specialist will be consulted to be sure it hasn't penetrated her tailbone. Her white count is climbing again and we don't know why. She's on complete antibiotic, antifungal and antiviral coverage, such that the nurses find it challenging to get everything in along with fluids and 24/7 TPN. She has intermittent fevers that don't fit any kind of pattern but no positive cultures. The last couple of days Karis hasn't felt well enough to spend more than an hour sitting in a chair.

Valerie has a ticket to return to Italy on Sunday. It's lovely to have her with us these days!

Monday, March 30, 2009
(Debbie) Karis moved out of ICU to 12 North, room 1283 (phone 412 802-3213) early yesterday morning. She did fine on Saturday but they didn't have a room for her. Later in the morning yesterday she spiked another fever, but has been OK since then. It's wonderful to be in a room with a large window again! And not have the limitations on visiting that are necessary in the ICU.

Dr. Costa just told us he wants to try putting in a G-tube, so that Karis can get rid of the NG. I hope it works! He also authorized an increase in her TPN calories. That should help her to have enough energy to get out of bed a bit more and maybe start walking a little bit.

Rachel will be returning to Brazil tonight, and Dan returns to work in DC. Valerie is checking into options for going back to her classes in Italy. Dave plans to be here through Easter. They all thought they would be here longer but since Karis didn't have surgery last week and will be settling into a more stable (we hope!) "waiting" time, they need to get back to their own responsibilities.

Ricardo is doing better! Last night he was taken off of the oscillator back to a regular respirator. Thank you for your prayers for him.

Friday, March 27, 2009
(Debbie) Good news! For 24 hours Karis has been stable (no fevers or other crises) and will be getting out of ICU tomorrow morning!

These next days are critical for Ricardo. He's hanging on but it's been tough, fighting pneumonia, sepsis, and kidney failure all at the same time, while severely immunosuppressed because of the OKT3.

Tuesday, March 25, 2009 ~ 7:30 pm
(Debbie) I just read Dave's update & thought of a couple things to add. First, about Ricardo: he's fighting a tough battle with kidney failure. He's been put on dialysis and has been switched from an "ordinary" respirator to an oscillator (which brings back a lot of memories to us from 2004). His family really appreciates your prayers for him.

Secondly, just to clarify about Karis: because the results of the biopsies were not what the docs had expected, Karis will not be having surgery this week, nor any time soon.

As we understand her situation better, we'll let you know. Our most immediate goal is to get her out of ICU. Then we'll start trying to figure out what needs to happen so that she can go home from the hospital. It may be months before organs become available to her, because she'll be considered low priority on the transplant list.

Karis has spiked two fevers today, so Dr. Costa is reluctant right now to let her out of ICU. She is vulnerable to infection not only because her immune system has taken a huge hit from the OKT3 and steroids, but also because the lining of her stomach and intestines, which provides a barrier to organisms entering the bloodstream, is no longer there.

David is really in severe pain from whatever he did to his lower back and hip (pulled hamstring is part of it). He's to stay off it, so I took him from the chiropracter straight to bed. He was SO relieved to have "doctor's orders" to relax a bit!

1:30 pm
(Dave) Not good news I’m afraid.  Only once in all the many transplants, have the doctors seen such violent rejection or deterioration in the duodenum and stomach.  This may be due to something like a rotovirus and not rejection, but whatever it is, Karis has no more regenerative cells in her stomach, duodenum or jejunum (upper small intestine), though she does in her ileum (lower small intestine).  As a result she is being listed for a new multi-visceral transplant (five organs).  However, since her liver and pancreas are doing well, she will not be a high priority, so nothing should happen soon.

She may get out of ICU tomorrow since she doesn’t have any urgent issues that require her to be there.  She had a pretty good day yesterday with some pain, but has been in considerably more pain today, principally from her tummy, which is distended.  Both hips hurt, but she’s ignoring that for the time being until she can gain enough strength to stand or walk.  She’s down to 87 pounds, so they should be increasing the calories in her TPN, running the risk of stressing her liver.  In addition to those issues, the doctor doesn’t want her to even have ice chips so as not so stress the stomach more and so as to void possibly vomiting; so her mouth feels very dry and makes talking difficult. 

In addition to these prayer requests, we need to pray continually that Karis not get an infection.  If she does and her central line catheter gets infected, she will lose her only means of nutrition, fluids and medicines.  That’s what’s keeping her alive.

Just for the sake of empathizing with her, I’ve injured my thigh and am in a fair amount of pain also.  Had to sleep alone last night to try to find a comfortable position – after almost two months of sleeping alone and finally being with Debbie! :(  I’m on my way to see a doctor this afternoon.

Sunday, March 22, 2009
(Debbie) After a difficult bout with high fever Saturday night (side effect of OKT3), Karis has had the best day today in recent history.  She's been awake, alert, and feeling reasonably well, with no crises except a small dip in oxygenation which required a mask for awhile.  Dr. Costa decided not to give her OKT3 today after her hard time last night, so it feels like we're on vacation!

Tomorrow, Monday, she's to have the scopes and biopsies and Tuesday, decisions should be made based on the biopsy results.  Karis is very pleased to have Dan here (she was out of it last weekend when he came) and looking forward to her sisters arriving tomorrow, Rachel midday and Valerie in the evening.  Since so many family members will be around the next few days, we'll be able to take turns being with her during the hours we're allowed to visit.  Tomorrow I'm planning a "Sabbath" from the computer, so we may or may not post an update.  If you need to reach me, call my cell phone, or wait until Tuesday for e-mail or chat contact.

Saturday, March 21, 2009 ~ Happy Spring!!
Hospital address is under Contacts (at left)
(Debbie) Because of the mega-doses of steroids she received, Karis wasn't able to sleep at all for two full days and nights. By the end of the day yesterday she was beyond exhaustion. Finally today she has been able to sleep, and that's all she wants to do. My thanks to those who wanted to visit but understood that she needs quiet today.

She's been running fevers and needing Lopressor to control her blood pressure, consequences of the medications she's receiving. Her tummy hurts more, but yesterday morning the bleeding stopped through her NG and she's had very little from her ostomy. I hope that means the anti-rejection meds are working.

Over the next three days, our family will be coming: Dan from DC, Dave and Rachel from Brazil, and Valerie from Italy. I'm grateful for those in each situation who have made adjustments and taken on extra responsibilities so that the six of us can be together just now.

In case you'd like to see a book newly-released in Brazil about Karis, click on the ad below.

If you speak Portuguese but live in the US and would like Dave to bring a copy, send me an e-mail through the site (at left) by the end of the day tomorrow (Sunday). $15.00 including S&H

Karis in Port$15.00 w/S&H

Friday, March 20, 2009
(Debbie) I think I wrote too much information at once yesterday, so it was hard to absorb.  Bottom line: Karis is in a critical situation with all kinds of factors going against her.

Yes, that has frequently been the case for Karis.  Perhaps God WILL bring her through once again, but from the medical point of view she doesn't hold a winning hand.  It may be that God will heal her in Heaven, rather than here on earth.

We have to decide how to respond to this situation.  We want to do what we can to make each day special, joyful, satisfying.  But Karis has limited energy, so we want to help her use it for what is important to her.  She loves to have visitors, but sometimes she needs to rest.  Please call me (574 339-3350) before you come to the hospital, and understand if Karis needs down time.  Don't count on Karis listening to phone messages or reading e-mails in a timely fashion.

ICU visiting hours are 10-1, 3-7, and 9-11, but the nurses reserve the right to bar or limit visitors; two are allowed at a time and you must call from the waiting room to get permission to enter the ICU. The nurses get really irritated with people who just walk in.  Sometimes you may be asked to wait for awhile if some procedure is taking place.  (All of this applies even to me; I frequently am kept waiting or am asked to leave.)  Only immediate family members may call in for updates. DON'T COME TO VISIT KARIS IF YOU HAVE SYMPTOMS OF INFECTIOUS DISEASE. There's a sink just inside the door to her room. Wash your hands before you proceed to see her. And use the alcohol cleaner stuff on your way out.

One thing that is hard for Karis now is long phone conversations.  It takes too much energy to maintain that kind of focus.  Feel free to call, but keep calls brief (I've seen her simply push the phone away if someone talks very long).  Sometimes it's just too hard for her to talk back, or even to make her voice loud enough to be heard on the phone.  If she doesn't answer, leave a brief message that she can listen to later.

 From time to time, Karis reads some e-mails, or I read them to her.  She really appreciates them, but responding is difficult.

Karis doesn't have enough energy to be as bored as you may think she must be.  She can't deal with a lot of "stuff" or anything complex.  ICUs are not designed for accumulation of personal possessions.  Cards are nice because they are physically right there, they make the room pretty, and their messages are brief while still communicating love.

Live plants and flowers are not allowed in the ICU.

Karis's iPOD is once again proving its worth.  Sometimes the right music is the very best thing.  She loves being sung to, especially worship music.  She loves back rubs and foot rubs.

For those who have asked, here are specific prayer requests.

MEDICAL:
• for the OKT3 and steroids to successfully halt the rejection
• for protection from infection, especially of Karis's catheter, which is literally her lifeline
• for balancing out meds, electrolytes, fluids, platelets, blood, etc.  This is trickier than you might think.
• for pain relief and for healing of Karis's bedsore, bruises, and a couple of surgical wounds still open
• for both the ability to sleep, and the ability to be awake and alert
• wisdom for the doctors beyond their knowledge and experience
• for good sleep for the docs (they seem always tired).

OTHER:
• that in every situation and relationship, we will honor God and cooperate with what He is doing
• that these days while Karis is "trapped" within her unhappy body and within the ICU, she will feel freedom of spirit and much joy
• for each member of our family as we grapple with these difficult circumstances
• that Karis will be able to accomplish what matters most to her.

Thursday, March 19, 2009 ~ 4:30 pm
(Debbie) We've had an amazing day, with Karis awake, alert, and delighted to receive a number of visitors, including Debbie, the music therapist from Children's, who played and sang with her. She hasn't slept all day, but is trying to take a little nap now. We're gradually filling in the blanks of what's happened the last few days, and helping her distinguish her sedation-dreams from reality.

Dr. Costa just came by, and told us the plan he and Kareem have developed. From the results of the biopsies, they don't feel they have much hope of saving Karis's intestine, but they need to stop the rejection before it spreads into the stomach, pancreas, and liver. They're going to continue giving a dose a day of OKT3 until Monday, when they will repeat the scopes and biopsies (from top and bottom). If it seems the rejection has been arrested, they will then schedule surgery to remove the intestine (unless they see signs of regeneration of the jejeunum, which they don't expect to see). Karis will then go on the waiting list for an isolated small bowel transplant.

This is initially more shocking perhaps to other members of our family than it is to me, because I've seen how sick Karis is, watched the NG drainage cannister fill with blood, and noticed bleeding from her ostomy again today also. Her poor tummy is huge since motility has shut down. It's obvious that her intestine is in serious trouble. It's pretty crazy though to think about going through the whole transplant thing again. If Karis were coming as a new candidate for transplant, she would not be accepted because of her limited venous access.

Transplanting an isolated small bowel into a multivisceral transplant (leaving the other organs in place) has been done once in the history of the world, last August, when a young man was in a car accident that damaged his intestine but didn't hurt his other transplanted organs. He is doing well. So we have a 100% success rate!

The angiogram did not show blood supply problems to the intestine, so that is good. It did show a pseudo-aneurysm in her femoral artery, which a vascular surgeon repaired today by injecting thrombin. He told us that in olden days, this would have required surgical repair, as opposed to a 10-minute procedure!

Karis is having an unusual problem, for her: very low platelet count (usually she battles too-high platelets). She's been getting platelet transfusions as well as blood transfusions. We're grateful to the people who were willing to donate the blood that she is using!

Dr. Costa recommends that David come here, so he's making arrangements with Pastor Gedimar for others to fill in for him at a pastoring of pastors conference scheduled for next week in Vitória, and then he will look for flights.

One of our Lenten readings this week has been Psalm 139:13-16, ". . . All the days ordained for me were written in your book before one of them came to be." Let's celebrate each one!

11:30 am
(Rachel) My mom just sent me a message (and asked me to pass it on) saying that Karis is extubated, awake and no longer confused!!!  Praise the Lord!

Unfortunately, she didn't stop to give me any more details.  Probably later.  But what a relief!

Wednesday, March 18, 2009
(Debbie) Karis had the CT-angiogram this afternoon but I don't know anything about what it showed nor biopsy results nor any other information because the doctors were in the OR all day.  Karis continues on the respirator but we hope she'll be extubated tomorrow.  She had her second dose of OKT3 today.

Ricardo had his third dose of OKT3 today.  He was moved into an isolation room to help protect him from further infection.  The more OKT3 he receives, the more likely that his cancer will come back.  Please pray for the whole family.

Tuesday, March 17, 2009 ~ Happy Birthday, David ! ! !
(Debbie) An endoscopy from the top was performed this afternoon, which showed more serious damage in the duodenum and upper jejeunum than what has been seen from below (the lower ileum). The biopsy results won't be back until tomorrow, but the rejection is now considered "moderate to severe," and the decision was made to give Karis a dose of OKT3, which Dr. Michael just administered. They will decide a day at a time how many doses to give her. OKT3 powerfully wipes out the immune system, so the big danger is that she could get a serious infection (as in 2004 when she contracted Legionnaire's).

Karis was intubated for the endoscopy and they decided to leave her sedated and on the vent at least until tomorrow. An angiogram is scheduled for tomorrow morning to answer the question of whether there is adequate blood flow to the upper intestine. It's unusual for the upper intestine to look worse than the lower intestine. If there's a clot or some other impediment to adequate blood flow, that could help explain what's going on and help the doctors to know how to treat it. The angiogram machine is in a hospital close by (connected to this one) and they think transporting her there will be safer on the vent.

We understand now why Karis's system was backing up and why she was not able to eat the last few days even though she wanted to. Damage from the rejection impaired her motility.

Biopsy results today from the scope of the ileum yesterday actually show healing occurring in that section of her intestine, so that is encouraging. We'll take things a step at a time!

Monday, March 16, 2009 ~ 11:30 pm
(Debbie) When ICU visiting hours ended tonight Karis was intensely focused on pulling off or out anything she could of the many lines, tubes, drains, etc. encumbering her.  She had just received another mega-dose of Solu-medrol (steroids) and she was wired.  I think the sweet nurse is going to earn her paycheck tonight!

Good things:
• no more fever (or only low-grade)
• fluid balance restored
• tummy less distended and painful because they drained a LOT of fluid through an NG tube—a whole liter when they first put it in, of apparently the same stuff coming out the other end, or actually mostly not coming out, hence the abdominal distention and back-up.  No wonder Karis was nauseous and throwing up.  (This NG tube was one of the objects of Karis's steroid-fueled attack . . . I wonder if everyone hates NGs as much as Karis does.)
• blood sugar is being controlled with an insulin drip, which can be tweaked as need be
• she was breathing better, generally keeping her stats up with just a nasal canula, though when she falls asleep sometimes they have to put on a mask (10 L of oxygen) to keep her over 90%.  Apparently one thing the CT scan yesterday did show is a possible aspiration pneumonia.
• the ICU nurse told me they're going to do another scope tomorrow (perhaps from the top??)  Biopsy results from today should be ready tomorrow.
• the docs relented and let Karis have some pain medicine.
• I think she was more coherent than she has been the last few days, at least in regard to the reality immediately around her.  A common topic of conversation was her desire to go home and not stay there any more.

Oh, here's one conversation that you might enjoy (from a couple of days ago):
Me:  You've been pretty sleepy, Karis.
Karis:  Yeah, but mostly just rude.
Me:  Rude?
Karis (with great intensity):  Yes.  It's to show those people that President Bush is the victim of rudeness.  I have to be rude to them to show them what it feels like.  No matter what, this rudeness is completely over the top.  It has to stop.

Let "those people" beware!

11:30 am
(Debbie) I'm in the ICU waiting room while Karis is being "installed" in bed 26.  They should call me shortly to go back to be with her.  Quickly, a few things we've been dealing with overnight and this morning:
• fever
• scope and biopsies done this morning showed her intestine looking a lot worse
• she dehydrated again
• her tummy is very distended and painful but they won't give her pain medicine because of her mental confusion; she's been battling nausea and throwing up
• this morning her blood sugar was "critical high," which means over 500
• the combination of these factors made her very agitated overnight; constantly getting out of bed and throwing herself around the bed when she was in it

Neither of us slept much but we did have a precious time of prayer and worship during the wee hours.  Karis was expressing herself mostly in Portuguese so I started singing some Portuguese worship songs and she joined in from time to time, and prayed fervently for God's help.  Please pray for the doctors, because they're not sure Karis is strong enough to tolerate more aggressive anti-rejection drugs.

More later . . .

10:30 am
(Debbie) Karis has taken a dramatic turn for the worse and is being transferred to ICU.  More details later.

Sunday, March 15, 2009 ~ 3 pm
(Debbie) Karis isn't quite as sleepy all the time as she was, but is quite confused, saying and doing funny things.  This morning she decided that she was going home so she got out of bed by herself and I just managed to catch her before she went down.  She's not strong enough at the moment to stand or walk by herself.  So now she needs someone with her all of the time.  She gets ideas and just does them so we have to stay close.  I can certainly understand her desire to get out of here—she is so tired of being in the hospital.

There are a myriad of details that I won't bother you with.  The bleeding from her intestine stopped during the night last night, thank God.  They're planning to do another scope and biopsies on Tuesday (which will be a week since her last one).  The CT yesterday was not really helpful.  To protect her kidneys, they had to do it without contrast so it didn't give detailed information.  There seems to be no evidence of swelling or bleeding, though, so the confusion and sleepiness are apparently metabolically based rather than any actual event occuring in her brain.  I hope it will resolve soon; it's no fun seeing her like this.  Her Prograf level is back to normal so she's getting her first dose since Monday night.  We don't want it to go too low because of the fight against rejection.

Ricardo was reintubated today.  He's septic and in renal failure.  Appreciate your prayers!

Friday, March 13, 2009 ~ 10:30 pm
(Debbie) Karis has been very sleepy and out of it all day, reminding us of the way she was leading up to her seizures back in January. As then, her Prograf level has been very high the last three days. I decided to spend the night here at the hospital because of my concern that she could have seizures again. Dr. Costa just called me and said they're going to start giving her anti-seizure medication IV tonight (the nurse is giving the first dose right now), and if she's not better by morning, do a CT of her brain tomorrow. We sure don't want her to proceed to seizures if that can be prevented!

Since nothing has grown in any of the cultures, they have stopped all of her antibiotics, to simplify the combination of drugs her body has to deal with. They will keep a close watch to be sure she doesn't develop another infection while they're fighting the rejection.

Late this afternoon Karis started bleeding from her intestine. Tomorrow they will evaluate the significance of this and decide what further steps need to be taken in counteracting the rejection.

Eudiscélia came to see us this afternoon. Ricardo is still in ICU, off the ventilator but still on a high level of CPAP (forced oxygen through a mask). His kidneys aren't working well either. Eudiscélia is hoping for a frank conversation with his doctors tomorrow, so that she can understand better what they think is happening with him. I don't yet have more information about Ted.

My son Dan should be arriving soon and will be spending the weekend with us. I hope Karis will wake up so that she can enjoy his visit!

Thursday, March 12, 2009 ~ 9 pm
(Debbie) Karis is out of ICU!!!  Hurrah!!  She's settling in to 11 North, room 1186.

Still nothing has grown from the cultures, so it could be that we're "only" dealing with rejection, not a bacterial infection as has been thought.  Or maybe a viral infection that triggered the rejection.  There seems to be a viral intestinal infection going around.  We may never know for sure.

Karis is still struggling with nausea, pain, rashes and itching, but she hasn't had more fever.  They started her back on TPN today since she's had too much nausea to take in calories orally—don't want to lose too much ground nutritionally.

I've received some good questions, which I appreciate because they help me know what I'm forgetting or not explaining very well.

Re. pulling the translumbar catheter and the apparently unfortunate timing on that: Dr. Kareem was concerned because an injection of dye did show a clot at the end of the catheter.  So he felt that line had to come out.  It's too bad that she needed another central line so soon, and it was a bit hard on the doctor who had to come up with another "creative access" (Karis says he was pretty frustrated), but thank God he was successful.  The transhepatic line actually goes straight in to her liver from the front, so it's more comfortable for being in bed than the translumbar which was in her back.

Re. the dehydration: it was "severe." (Dr. Michael: "You scared me, girl!")

Re. the seriousness of the rejection: Dr. Michael just told me it's considered "mild" and was caught early (it wasn't there in last Thursday's biopsies) so we hope it will respond just to steroids and not require more aggressive medications.

Re. Ricardo: I don't know; I've been focused on Karis but I want to try to connect with Eudiscélia tomorrow, since I didn't manage it today.

Thank you for caring enough to want to understand!

Ted's surgery lasted six hours; I don't know more details yet.  Thanks for your prayers for him.

6 am
(Debbie) I just called the ICU and learned that the 11:00-6:00 part of Karis's night was much better than earlier while I was there, which was difficult (chills and fever, nausea, a lot of tummy pain and diarrhea, rash and itching, bad headache, altogether miserable).  Thank God.  Her vital signs stabilized, she didn't spike any more high fevers, only needed pain medicine once, and was able to sleep much of the night.  I am so relieved that things got better.  Perhaps the solu-medrol has already helped, or the new antibiotics, or both.  I can't go back in to see her until 10:00 a.m. so maybe I'll go back to bed . . .

Please pray today for our friend Ted Limpic (who used to manage Karis's sites): he will be having surgery today for aggressive prostate cancer.  Thanks.

Wednesday, March 11, 2009 ~ 6:20 pm
(Dan) As I was typing this I just got a call from Mom saying that Dr. Kareem just got the biopsy results which are positive for rejection, and called into the ICU to order an immediate mega dose of solu-medrol.  Mom did not yet get to talk to Dr. Kareem directly and doesn't know how severe the rejection is.

Rejection definitely complicates the situation, and unless the doctors tell us otherwise we are guessing it is occurring in combination with, not in place of, an infection — which is the hardest thing for Karis's situation because, as we have been through a few times before, it is difficult to balance between depressing vs. stimulating the immune system — the first to fight the rejection and the second to fight the infection.

6 pm
(Dan) Today had been much better in terms of Karis's basic stability until about an hour ago, when Karis spiked another high fever, her heart rate is now up at 137 and her blood pressure is high, and the diarrhea picked back up in volume.  So clearly something is still not being addressed — in response they are starting another one or two antibiotics.  No biopsy results have been communicated yet by the doctors, but they may have them.  Dr. Costa has been in and out quickly without time for questions. Low blood pressure and dehydration are no longer the chief concerns, thanks to the central line they put in last night.

Mom has been allowed to stay in the ICU all day, without being chased out for shift changes, etc.  She has read aloud to Karis most of a book, Gideon's Gift, which they've enjoyed.  Karis is lucid and able to speak clearly when awake, but very tired and frustrated to be back in the hospital, and still in a significant amount of pain.

11:30 am
(Debbie) Karis is holding her own without blood pressure medication, which was eased off during the night.  Everything seems to be going well except that her white blood cell count keeps climbing and this morning was 47,000 (normal would be more in the 8-10,000 range).  Nothing has grown from all of the various cultures, so the docs don't know yet what they're treating (though Dr. Costa thinks it's bacterial rather than viral).  Because of that they're going to keep her another day in ICU even though her other numbers are all stable enough to move back upstairs.  They're letting her have clear liquids but her first sips made her so nauseous that she hasn't wanted to try more yet.  She's pretty wiped out, of course, and still having a lot of tummy pain.

In our devotions this morning we read 2 Cor. 8, and I was particularly struck by verse 12 in relation to our situation.  One of the things that most distresses Karis is that she feels so useless, stuck in a hospital bed so much of the time, consuming resources rather than being able to work and give to others.  I often feel that way too, in relation to our work in Brazil.  Verse 12 brought tears to my eyes:  "For if the willingness is there, the gift is acceptable according to what one has, not according to what he does not have."  We are thrown back again to God's grace, grateful for his Presence and his purpose, even when we can't understand it.

Tuesday, March 10, 2009 ~ 9:15 pm
(Debbie) They just let me back in to see Karis after the evening time of shift change, etc. when visitors aren't allowed.  During the time I was out, they successfully inserted another central line, not exactly in the same place—this one is called a transhepatic (through the major vein that leads out of the liver to the inferior vena cava and then to the heart).

This large catheter allows them to give fluids and medications more quickly, and we are seeing good results from that. Karis's blood pressure is now normal (97/60) and she has started making a little bit of urine.  The diarrhea has slowed down, so that helps a lot.  Her blood pressure is still partially supported by medication, but they've been able to reduce the dose.  So things are starting to come together in terms of rehydration.  We still don't know what caused the violent diarrhea, so they're giving her a couple of broad-spectrum antibiotics while waiting for culture results.  One of them requires pre-treatment with benadryl to prevent an allergic reaction, so Karis is having a benadryl nap right now.  Her arterial line is in her femoral artery and is very positional, so from time to time the nurse wakes her up a little bit to reposition her leg.

I got to watch the endoscopy since it was done right at bedside this afternoon.  The doctor said it looked to him more like infection than rejection, which was a good thing to hear.  We should find out biopsy results tomorrow.  Possibly what caused all this is an intestinal virus.  We'll know more tomorrow!

noon
(Debbie) Finally a few minutes ago they let me in to see Karis.  Dr. Costa greeted me with "She's a very sick girl and we don't know why."  She continues to have very high volume ostomy output and they now have three peripheral IV lines in her trying to keep up.  At the worst her blood pressure was 60/40, with heart rate of 175.  Right now it's 82/44 with heart rate varying from 98 to 101 (I'm sitting beside her bed in the ICU; she's very tired and is trying to sleep).  Apparently they tried all morning to get a PICC in, so that they wouldn't have to resort to re-insertion of the translumbar catheter, but without success.  So this afternoon they're planning to do a scope and biopsies and attempt re-insertion of the translumbar central line.  It's too soon to have results from the multiple cultures they have incubating.

Well, I'm glad we decided to bring her to the hospital last night.  Dr. Kareem's first response was "You know how to take care of her; just bring her in to 7 West in the morning."  But the diarrhea was just coming out too fast so they agreed for me to bring her in to 12 North, and then Dr. Michael decided to put a monitor on her, which is what alerted the nurse when things started quickly going badly.

(My brother Steve, who manages Karis's sites, is on jury duty in San Diego, so there may be a delay in getting this posted.  I'm grateful he managed to post the earlier messages before he had to go offline.)

10:30 am
(Dan, from D.C.) Just spoke to mom again.  She hasn't been allowed in to see Karis yet but should be soon (ICU's strict visiting hours start at 10 AM).  Karis is apparently losing more fluids than they can put back into her at the same rate.  They may need to try putting the central line back in, which would be a difficult thing to do.

8 am
(Dan, from D.C.) During the night Karis was taken from 12 North into ICU.  The doctors wanted her under closer observation due to a spike in fever, tummy pain and tachycardia (fast heartbeat), according to a phone call Mom got at 730 this morning.  We don't know much yet about the cause, nor whether she has improved through the night or not.  Mom is headed back over to the hospital.  We'll keep you updated.

Monday, March 9, 2009
(Debbie) Karis was doing great when she saw Dr. Kareem at clinic this morning.  He surprised us by pulling out her J-tube.  Then he sent her to Interventional Radiology to remove her trans-lumbar central line.  We finally pulled away from the hospital at 4:20 p.m.  Karis was tired by the time we got home and went straight to bed.

While she was sleeping, she started having a great deal of liquid diarrhea—in fact, over two liters in five hours.  We had to bring her in to the hospital, on 12 North this time.  We hope it will just be a matter of rehydrating her and that whatever caused the diarrhea will quickly take care of itself.  Dr. Kareem did tell us at clinic that her white count was elevated, but at that point she had no symptoms of any problems.  Amazing how quickly things can change!

Sunday, March 8, 2009
(Debbie) The answer is — YES! — it is possible to have two great days in a row — Karis has just done it!  Shall we go for three?!  It is amazing to see how well she is doing.  Yesterday her labs were perfect (took four hours dozing in the recliner on 7 West to find that out because the lab had some problems with machinery).  Karis then spent a very fun day with friends here visiting from Michigan and from Notre Dame.  She's eating without diarrhea but I don't know how well she's absorbing because she's still requiring 16 mg of Prograf (immunosuppressant) per day (8 morning and 8 evening) to keep her level high enough (she used to do fine with 2 and 2).  Weight yesterday 94 pounds (she took a big drink just before weighing and wore her heaviest shoes!—wants very much to see that number going up!).  She's sleeping this morning so that she can enjoy the afternoon and then go to church this evening.  First time to church since early December.

The one concern from yesterday is that the 7 West nurses were not able to get blood return from her catheter, though it flushes fine.  This may mean a clot has formed again at the end of the catheter, which if it should break loose would go straight into her heart and out into her body somewhere.  Dr. Kareem says he's going to remove the catheter tomorrow (Monday) and meanwhile she's on double dose anticoagulant injections because her INR is very low, which could lead to clots in other parts of her body as well.  We've been through that and it ain't fun!  After the catheter is removed, she'll start again on Coumadin and once her INR is high enough, stop the injections.  That WILL be fun.

You may remember from years past our requests for prayer for our little Brazilian transplant friend Ricardo and his mom Eudiscélia whom we met in the ICU at Children's in May 2004 just after his first transplant at age 2.  Ricardo has had a tough battle with liver cancer this last year and two weeks ago had another transplant—of 8 organs!!  The five Karis had plus kidneys and colon (this is the first I've heard about transplanting the colon here, though I know it's been done elsewhere).  Ricardo is having a tough time getting off the respirator.  They tried to extubate Friday but it didn't go well and they had to intubate him again.  Eudiscélia and her family visiting from Connecticut came by the house this morning to see Karis, since she wasn't able to visit Ricardo in the pediatric ICU.  Perhaps Karis will be able to go see him this next week.  We would appreciate your prayers for Ricardo and his family.

Friday, March 6, 2009
(Debbie) What a lovely day—the weather was warm, a foretaste of spring to come—and Karis felt better than she has in so long.  She didn't take pain medicine the entire day, the first time in weeks if not months.  A friend is visiting from out of town and though she's taken time out for naps during the day, Karis has been able to enjoy activities with her that even a few days ago would have seemed impossible.  We have to go to the hospital (7 West) early in the morning for blood tests, but I'm expecting they will all be normal and that we won't have to stay for any treatments.  Karis is already counting on that and making plans for the day.  It is wonderful to see her animated, enjoying her friends, involved with LIFE . . .

We made a midnight "emergency" trip to the hospital last night—Karis's catheter dressing had to be changed and we didn't (still don't) have the necessary supplies at home (Kareem wanted to be sure no home health nurse would touch it!).  When I woke up the poor coordinator on call, she was stumped—said she had never run into a situation like this.  But we hit on the idea of calling 11 North to ask whether they would be willing to change the dressing, and that's what worked out.  We were back in bed by 2 a.m., happy that we live so close to the hospital!

Deepest thanks to each person who has written us encouraging words in e-mails.  We appreciate each one.  I would like to respond to each one but simply don't have the energy—I find myself very tired, needing some catch-up time for myself after these six months of almost non-stop hospital time (except for the weeks I spent in Oklahoma for the last days and the death of my father), and shortly before that, moving out of the apartment following our big extended family trip to Guatemala, while Karis was still recovering from her hip replacement . . .  It's actually helpful to write this down as I find myself wondering why I'm so wiped out.  A few more days like today will work wonders.  I wonder whether it's possible to have two such days in a row . . .

Thursday, March 5, 2009
(Debbie) It seems like we've spent as much time at the hospital as at home since we officially came home.  Wed. we were there from 7 a.m. to 4 p.m. and today from 6 a.m. to almost 2 p.m.  No, they haven't yet pulled her line because they've needed to use it, to rehydrate her from very high ostomy output.  Today she had a scope and biopsies and the doctor said everything looks good!!  We'll probably hear the official report when she goes back to the hospital on Saturday.  Tomorrow we get the day off, and the weather has suddenly turned lovely so we're hoping for a trip to the park!

Tuesday, March 3, 2009
(Debbie) Karis was released from the hospital about 3:00 yesterday afternoon, in bright sunshine but very cold temperatures.  She was so happy to see her own bed that she climbed right in and slept for two solid hours.  We enjoyed with Battle (Carol hasn't been well—please pray for her!) a wonderful dinner provided by an Ascension friend (THANK YOU, Nancy!), and by then Karis was ready to snuggle back in for a bedtime story and another good sleep.

The docs gave us the day off today—we don't have to return to the hospital until tomorrow morning at 7:00 for blood work and, if all is well, removal of the trans-lumbar central line.  (Her INR—measure of blood coagulability—was too high yesterday to remove it before we came home.)  We have mixed feelings about pulling the line.  Leaving it in is a high risk for infection.  But removing it means losing a valuable resource should she get sick again.

Please pray for us as we continue the guessing game as to the right amount of anti-diarrhea medication.  We don't want to block her up again but also don't want her to dehydrate here at home.  That's what would most quickly put her back in the hospital (that I'm aware of).  The home health nurse just left and will be coming daily for awhile.

Today we need to get her on the schedule for out-patient PT, find a place for all of the stuff we brought home from the hospital, and get back into cooking-at-home mode, which will be fun!

Sunday, March 1, 2009
(Debbie) The good news about this weekend is that we got through it!  A couple days after they stopped the TPN, as Karis started eating more, she started having too much diarrhea again.  They kept increasing medication to get that under control, to the point that everything clogged up like São Paulo at rush hour but much more painful.  Things seem to be balancing out now and we hope Karis will be going HOME tomorrow morning!!

Thursday, February 26, 2009
(Debbie) Sounds like it will be a few more days before Karis can go home—not because she's not doing well, but because the doctors have decided they don't want her to go home with a trans-lumbar catheter.  They're going to keep her here until she completes her course of IV antibiotics and has shown she can eat enough to not need TPN anymore (she's doing well with eating!).  Once the requisite antibiotics are completed, they want another set of blood cultures to be sure she's clean, and then they will pull the line and let her go home.  She's already imagining how fun it will be to take a shower, which has been prohibited while she has this line.

Pray that nothing else goes wrong while we hang out here these last days!!  Karis has been walking over to Children's to use the library there (there's not a library here at Montefiore), gradually getting her reading-and-writing skills back and looking forward to life Outside!

Tuesday, February 24, 2009
(Debbie) Karis is doing well, and plans are taking shape for her to go home by the end of the week.  Very exciting!!  I just figured out that since her surgery Sept. 3 (almost 6 months ago), Karis has had a total of 37 days out of the hospital; since Dec. 15, only one (Christmas Day).  Karis and I agree that we're willing to give up the hospital for Lent!

Monday, February 23, 2009 ~ Happy Birthday, Marsha!
(Debbie) Overall, Karis has had a good weekend.  She's walking farther and more steadily, eating three small meals a day now and still has NOT shifted back into massive diarrhea (!!!).  Increasingly, she's able to do things she wants to do.  There have been big changes from a couple of weeks ago!  Thank you, Lord!

More detail: Her white count went back up some Saturday (a day she didn't feel very well) so they increased the antibiotic she's struggling with from twice to three times a day, each time given with benadryl—sometimes a double dose to make it through—and over four hours (do the math . . .).  It must be working because her white count was down some again yesterday.  Dr. Kareem is trying to decide what criteria to use for letting her go home, which seems mostly related to her nutrition.  He'd like to see her successfully eating enough to be able to reduce the TPN to 12 instead of 24 hours/day as it is now.  Karis is up from 89 to 93 pounds, but this mama's heart would like to see her with at least ten more.

One interesting thing Dr. Kareem just told us which has made us feel less concerned about the "stripped" section of her jejeunum:  in surgery, he stitched that section to her abdominal wall, so that it would have more support.  He now says he wants to give it 4-6 more weeks and then if the jejeunum has not given trouble, he'll take the J-tube out.  That was really nice to hear.  We think her ileum must be healing because it seems to be functioning well!

Friday, February 20, 2009 ~ 1:15 pm
(Debbie)  They tried giving Karis the antibiotic again this morning, with benadryl, and this time though she itched a lot and got rashy, she was able to tolerate it.  Good news is that her blood cultures were negative this morning!  For the first time the idea of her going home came up—"maybe some time next week," says Kareem.  That's an exciting prospect!!

8 am
(Debbie) Karis had a bad reaction to the antibiotic last evening.  Please pray about where we should go from here in the fight to save her catheter.

Wednesday, February 18, 2009
(Debbie) Dr. Kareem told us a few minutes ago that he wants to aim at the idea of not doing another surgery at all.  He says if the jejeunum perforates, it perforates, and then we deal with it.  But meanwhile he believes the ileum is going to heal.  On that theory, he's letting her eat a little bit ("Slowly!  Carefully!  Just a little bit") and we'll see how it goes.  Such fun for Karis to eat a few bites of chicken and carrots!

Karis has been itching a lot for a couple of days and today broke out in a rash all over her body.  We wondered if she's reacting to the new antibiotic, but Kareem thinks it's contact dermatitis and ordered hypoallergenic sheets and gowns and benadryl.  He completely redid all her dressings (which had been completely redone already this morning, a process that took about an hour).  She hasn't felt good enough to be up and about very much today.  The new antibiotic does seem to be working though: her white count is down to 19,000.

Diane Morris read to Karis several lovely poems by Amy Carmichael.  Here's part of one:

Eternal Love, we have no good to bring Thee,
No single good of all our hands have wrought,
No worthy music have we found to sing Thee,
No jewelled word, no quick up-soaring thought.

And yet we come; and when our faith would falter
Show us, O Love, the quiet place of prayer.

Tuesday, February 17, 2009
(Debbie) Karis's white count was down from 32,000 to 22,000 this morning, so Dr. Costa decided to keep fighting to save this central line!  Hurrah!!  That was our very specific prayer yesterday—we are grateful!  Karis has been itching a great deal though since Dr. Costa started a new antibiotic yesterday, so we are wondering whether she is allergic to it.

For those of you who know the hospital complex where we are, today Karis walked all the way from her room across the pedestrian bridge over to Presby.  We found a wheelchair to take her back, but that was a pretty long walk, pushing her heavy IV pole!

Monday, February 16, 2009
(Debbie) I have just learned that the Chester family, whose daughter died a few weeks ago while awaiting transplant, have lost suddenly another young member of their family.  It's hard to even fathom what they're going through.  Please pray with us for them.

We are enjoying a visit from Diane Morris of Colorado Springs.  This afternoon Diane participated in a spontaneous tea party in Karis's room that developed when Dr. Costa told Karis she could have 1/4 cup of any clear liquid and she chose hot tea.  The party included three other friends who happened to drop by and two hospital friends—the poor nurse had a hard time getting through the crowd to reach Karis's IV pole but he was a very good sport!  (One of the other docs came back to make sure Karis was only sipping her tea, not actually drinking it!)

Despite antibiotics, Karis's white blood cell count has risen each day and cultures are still positive.  If the WBC count doesn't start coming down tomorrow, Dr. Costa thinks we need to replace the catheter (put another in the same place).  You may remember they had to do this once before and it took three hours.  We are praying that the line can be saved.

Dr. Costa also told Karis that he wants to wait a few more days before doing a repeat endoscopy to see whether the ulcers in her ileum are healing.  Whenever they do that endoscopy, they will decide what needs to be done re. the injured area of her jejeunum.  Meanwhile they are too afraid of perforation of the jejeunum to allow her to eat anything.  That being the case, the thing to be done is make a party out of 1/4 cup of tea . . .

Saturday, February 14, 2009 ~ Happy Valentine's Day!
(Debbie) Karis has an infection in her precious catheter.  Dr. Costa switched her antibiotics around to fight it; please pray it's successful!

Friday, February 13, 2009
(Debbie) Karis is out of the ICU!!  About 9:30 p.m. she joyfully moved to a lovely large room on 11 North, room 1181.  The first thing she did was get out of bed and walk to the window, delighted to be able to look outdoors again!

Thursday, February 12, 2009
(Debbie) I haven't seen Karis yet this morning but she's still in the ICU, waiting for a bed to open up on 12 North.  We have enjoyed the e-mails praising God with us for Monday's endoscopy.  Please don't stop praying!  We know God can heal her completely, if He chooses to do so.  Meanwhile she still faces a number of challenges:
         * Her bedsore, which suffered during the surgery and aftermath, is now a stage 3 (deep, but not quite to the bone).  The docs want Karis sitting up in a chair as much as possible, and she likes that too—but it's hard on her bedsore.  Once she gets upstairs, she'll be able to walk, and that should help a lot, both for her lungs and for healing of all of her wounds.  Her bedsore deteriorated quickly during the time that Karis was so malnourished (and now a lot of her hair is falling out, which we also attribute to that period of poor nutrition).
         * Diarrhea—too much—continues, despite not eating or drinking anything other than a couple of ice chips now and then.  That means a lot of healing is still needed in her intestine (the biopsies in her ileum—lower intestine—show 20% of the number of crypts she should have).  It means Karis is still completely dependent on TPN (nutrition through her central line).  You know that this central line is a "creative access" line—Dr. Kareem has called it "the most precious asset in this entire hospital."  Please pray that it not get infected or damaged in any way.
         * The docs need wisdom to know what to do about the seriously damaged portion of Karis's jejeunum, and have asked us to pray for this.
         * Karis needs daily grace for dealing with having a J-tube (if you knew her in 2005 you know what that's like) and of course an ostomy, which we are grateful for but nevertheless presents its own challenges, and for not being able to eat or drink.
         * Karis wants to start weaning from the pain meds, but hasn't managed yet (not helped by the extensive coughing induced by respiratory treatments—not easy with such a sore tummy!).
         * Healing of her surgical wounds.
         * Protection of her liver while she's exclusively on TPN and taking antifungal medication again (because she continues to spike fevers).

Skip the following, if you don't want so many medical details:
Karis has been enduring some aggressive respiratory treatments to clear her lungs, and though the hours of coughing have been difficult, yesterday we saw fruit from that: she was able to spend some time off of the oxygen while sitting up.  That meant she was completely free for awhile of any tubes around her face!  (Her NG was pulled Monday.)  Yesterday also the surgeon pulled her JP drains.  They've taken out her arterial line and both peripheral IVs, and are letting her have periods of time without the blood pressure cuff on her arm and the pressure stockings on her legs.  All she has left to deal with all the time: IV lines going into the central line through her right back (attached, of course, to multiple pumps on her IV pole), ostomy, foley, J-tube, pulse ox, and monitor leads.  And of course her surgical dressings.  Pretty simple—she's definitely ready to get out of ICU!

Karis has been able to start some light reading to herself, which she hasn't been able to do for quite some time.  And she's been working on a project, which we hope to be able to tell you about soon.

Tuesday, February 10, 2009 ~ 6 pm
(Debbie) We've been waiting on the doctors to tell us the results of the endoscopy yesterday morning.  They have been busy with surgeries and only now Dr. Costa came to talk to us.  After what Dr. Kareem saw during the surgery last Thursday, they were VERY surprised by what they saw in the endoscopy (both Kareem and Costa were present when the endoscopy was performed).

Apparently they were able to reach the upper jejeunum with the scope, and it seemed to be fine—as was the duodenum and stomach!  The mucosa (lining of the bowel) was intact with only mild inflammation and no evidence of rejection!

So, the docs think that the biopsies taken during the surgery must represent only an isolated area of the jejeunum.  For the time being they have decided not to do additional surgery, and they're letting Karis out of the ICU as soon as a bed becomes available for her on 12 North.

All of this is so different from what we had been lead to expect!  Hallelujah!

Sunday, February 8, 2009
(Debbie) Karis is doing well, sitting up in a recliner in the ICU.  She really enjoyed time with her brother Fri. evening and yesterday (he left this morning to return to DC).  She has the same wonderful nurse today that she had yesterday, so that is a huge help in dealing with the disappointment of not getting out of ICU today.

Dr. Costa talked with me this morning about the results of the biopsies.  The news was difficult to hear.  The mucosa (the lining) of the jejeunum (the middle section of the small intestine) is destroyed.  There are no crypt cells left.  Crypt cells are the cells that can restore the lining of the intestine when it is injured.  The jejeunum will have to be removed before it causes additional problems to other organs around it.

Tomorrow an endoscopy from the top will be done right in the ICU.  This is needed to be sure that the damage does not extend into the duodenum (upper section of the small intestine) or the stomach.  After they receive the results of the endoscopy, the transplant team will evaluate everything and schedule surgery.

Meanwhile, Karis is feeling well enough to talk some on her cell phone and has enjoyed the messages that have been left on her voice mail.  If you call and she doesn't answer, feel free to leave her a message.  She might be resting or having something done to her or have used up her available energy for the moment.

Saturday, February 7, 2009 ~ 1:15 p.m.
(Dan) Karis is having a good day — she's in much less pain and she's been able to sit up in a chair in her ICU room. She speaks quietly but is very coherant, even with benadryl from time to time. She has a cheerful, helpful nurse, and we're hopeful that she'll be out of the ICU tonight or tomorrow. No word yet on the results of her biopsies, but she is on multiple medications in case the ulcers were caused by bacterial, viral or fungal infection. Her fever is down, but that may be thanks to the tylenol. Her heart rate and blood pressure are closer to normal, which is thanks to less pain. It's a beautiful warm day in Pittsburgh, and Mom and I are about to go get lunch together, having just had a nice conversation with Dad and Rachel on Skype.

Friday, February 6, 2009 ~ 8 p.m.
(Debbie) Karis was extubated this morning—great relief!  Her main issue today was pain.  She ran a fever all day and had to do breathing exercises to keep her lungs open after coming off the respirator.  We haven't been told yet but are hoping that she'll get out of ICU tomorrow.

Thursday, February 5, 2009 ~ 4:00 p.m.
(Debbie) Karis is out of surgery (8 1/2 hours, I think) and an exhausted Dr. Kareem just came to explain things. Bottom line: he was able to create a new ostomy, but Karis's intestine is not in good shape and Dr. Kareem won't know until the biopsy reports come back whether it may be salvageable or not. It will take some time to sort this out.

If possible Karis will be extubated tonight, but since the surgery was so much more extensive than expected she may have to stay on the respirator until tomorrow. If you're thinking of coming to visit, please call me first. She'll need some quiet time just for recovery for the next few days.

More detail for those who want it: Karis has multiple areas of ulceration in her intestine, even as far up as her jejeunum (the middle section of the intestine, not normally accessible by endoscopy either from the top or the bottom). We need to wait for the biopsy report to know whether the ulceration reflects chronic rejection (which Kareem doesn't think he would be able to treat) or an infectious process (which he might be able to treat). He inserted a drain into the jejeunum (a J-tube) as a port of access so they can continue to monitor the condition of that part of the intestine.

Whether Karis is dealing with rejection or infection, it's clear now why she's continued to have fevers, pain, and diarrhea, and not been able to eat.

Dave has been visiting his mom in Florida and is scheduled to fly to Brazil this evening. Dr. Kareem said that Dave should definitely go on to Brazil because it will take awhile to figure out Karis's situation and what should be done about it, and there's not much he can do for her during this initial recovery period. If /when need be, Dave can come back, but there is a time period now in which he can care for some things in Brazil, before anything major happens here. I'm saying this to allay concerns that some people have expressed to me about whether Dave should go to Brazil now. Both Karis and I want him to go. As Karis said, when Dave is in Brazil, she feels like she's part of what's happening there, and she really misses that strong connection when he is not.

2:15 p.m.
(Debbie) I'm told she's stable but it will take a while longer. 
(Don't you love how informative they are?!)

11:30 a.m.
(Debbie) I was just informed that the surgery is more difficult than Dr. Kareem expected so will take a little longer.  I was told to move to the ICU waiting room so here I am.

8:00 a.m.
(Debbie) Karis had a good night and was taken to the OR right on time, after her dad prayed for her over the phone.  The OR was reserved for four hours but we don't expect it to take that long; length of surgery will depend on whether they run into a lot of adhesions.  They hope to be able to extubate her in the recovery room—Karis was very happy to hear that!  We were told by a resident that she has the very best anesthesiologist at the hospital, the one who writes the textbooks.

Wednesday, February 4, 2009 ~ 6:30 p.m.
(Debbie) We were just informed that Karis's surgery is scheduled for 7:15 tomorrow morning.  They plan to send her to ICU for a couple of days so I'm cleaning out her room on 12 North tonight.  All is well.

Tuesday, February 3, 2009
(Debbie) Dr. Kareem breezed through here this morning to tell Karis that her MRI is significantly improved and they are scheduling surgery for Thursday!  Whew!  I don't know what time yet.  He said we need to go ahead and do this before something else goes wrong.  :-)

The second dose of TPA* successfully dissolved the clot on Karis's central line, apparently, because now it's giving blood return.  Her leg continues to improve; she's walking more steadily today and needing less pain medicine.  She requested—and received—permission to be off all IVs for an hour later on today, just to have a break from the ubiquitous IV pole.

TPN is Total Parenteral Nutrition.  It's nutrition directly into the veins, completely bypassing the digestive tract.  It can only be given through a central line (also called a central catheter), an IV line into one of the major veins of the body.  Eventually a central line clots or scars off the vein that it's in.  Karis has had so many central lines that none of her veins—that is, the ones usually used for central line access, are available anymore.  The one she has now, called a translumbar central line, is considered "creative access"—the staff here on this floor had never seen one before!  Karis needed TPN because her intestine hasn't been functioning well enough to keep her nourished through eating.

*TPA stands for Tissue Plasminogen Activator; it's a chemical that dissolves blood clots.

Sunday, February 2, 2009 ~ Way to go, Steelers!
(Debbie) Karis had a couple of tough days with her left leg very swollen and painful, but yesterday and today have been better; the swelling is going down and Karis has been able to walk more easily.  This afternoon she was taken to interventional radiology for them to try to figure out why there's no blood return from her central line.  They identified a clot at the end of the line and tried to dissolve it with TPA, without success.  Dr. Costa then came by her room and injected another dose of TPA, to be left in for two hours.  (The line is still working for infusion, just not for blood draws.)

Meanwhile a peripheral line was successfully inserted in Karis's arm to be used for injection of dye for another MRI of her brain, scheduled for 6 p.m. today.  They want to evaluate the impact of the return to anticoagulation therapy since Fri. night (ie. has it caused more bleeding?) and the status of the swelling.  They want a better idea of how healed and stable her brain is before considering surgery to restore her ileostomy.

Last week Karis made an attempt to return to normal food, but within a couple of days of eating just small amounts, she was back into diarrhea.  So she's back to NPO (nothing by mouth) except sips of water, ice chips and an occasional popsicle.  Her intestine just isn't functioning properly.

Dave flew out this morning and plans to return to Pittsburgh the end of March, unless something happens that requires his return earlier.  We all feel it's the right choice for him to go back to Brazil now.  He's been here almost three months!

Friday, January 30, 2009 ~ 9 p.m.
(Debbie) Yesterday late afternoon Dr. Costa came by and said, "Karis, would you like to go home?"  Would she!  She burst into tears of happiness.  Dr. Costa thought she might be able to go home today, on TPN.  Being hospital-wise, I thought it more likely that she would actually make it out on Saturday, since there's a lot to arrange for home care with TPN.

Today, however, has been very difficult.  Karis developed intense pain and swelling in her entire left leg and foot.  It hurt so much that she wasn't able to stand up, much less walk.  Later in the afternoon she spiked a fever.  Obviously, she wasn't going home today.  Late afternoon she went for a Doppler (ultrasound of her legs) which showed deep vein thrombosis (blood clots) in both legs, even though the right one doesn't hurt and isn't swollen.  In addition, she no longer has blood return from her catheter, which makes Kareem think she's developing a clot at the end of the catheter in the inferior vena cava.

Dr. Kareem just came by and told us he doesn't know what to do, and no other docs that he has consulted know what to do.  The dilemma is that when the MRI's were done of Karis's head at the time of the seizures, they showed two areas of hemorrage in her brain.  Because of that, her anticoagulation (bloodthinner) therapy was discontinued.  Dr. Kareem explained to us that the clots in her legs, while painful, are not life-threatening because her major veins are already blocked, so there's no way clots can get from her legs to her lungs or brain.  He's more concerned about potential clots related to the catheter.  And concerned that anticoagulants could result in more bleeding in her brain.

So—please pray for wisdom, for God's resolution of this catch-22 situation. Thanks.

Tuesday, January 27, 2009
(Debbie) We're crossing our fingers and hardly daring to believe it, but Karis seems to be getting steadily better!  She's eaten a few bites of "real food" and has handled that well so far.  She spent all morning out of bed today, delighting in sore muscles because of the exercise she's been getting (tho just walking still shoots her heart rate over 130).  Most of her labs are better.  We keep filling in the gaps for her as we encounter things she doesn't remember from the week she "disconnected" from our reality.  It will take time for her brain to heal, but she's daily able to do things she couldn't manage the day before.  We're encouraged!

Sunday, January 25, 2009
(Debbie) Karis has a LOT more energy today—when I came in early, she had already been walking around the unit with the help of a nurse, and with me she walked around four times, and is now out walking again with David!  Only when Dr. Kareem came in did I start to connect some dots.  After giving Karis a big hug and kiss, he told us he woke up at 4 a.m. worried about whether Karis might be in rejection, and decided to give her 1000 mg of Solu-Medrol!  No wonder Karis is wired!  It's nice to see her up and wanting to do things!!  (This is a very large dose of IV steroids—the usual first treatment when rejection is suspected.  It's like a huge shot of adrenalin right into your veins.)

I am feeling very humbled by this event, because I went to sleep last night fretting about whether Karis might be in rejection, and Dr. Kareem's statement that even if she is, he wouldn't be able to treat it. It seems like God woke him up and told him to do this.  The day nurse told me that the night nurse was VERY surprised to receive this order at 4:30 in the morning!

It's humbling that with all of the patients he is caring for, many of them very ill, Dr. Kareem would be so concerned about Karis.  For me personally, it's an encouragement to renew my trust in God for Karis's care.  I appreciate this right now, as Dave prepares to return to Brazil a week from now.

Karis hasn't had any more fevers, thank God.  This afternoon she's to receive a blood transfusion; otherwise it's a quiet day as snow flies outside.

Saturday, January 24, 2009 ~ Luke, sorry I missed your birthday!  Belated Happy Birthday!!
(Debbie)  We gave up on finding Karis's old cell phone and got her a new one, the same number as before.  Unfortunately she wasn't on the backup program so there's no way to retrieve all of the information that was stored in the old phone.

For the last couple of days Karis has been running persistent high fevers, which of course make her feel sick and draggy.  Dr. Cruz just came in to say she has a urinary tract infection; he expects the antibiotic to work quickly (she's just had her first dose), but doesn't think it accounts for the fevers.  They're going to switch her off of Decadron (a steroid used to help decrease the swelling in her brain) back to Hydrocortisone to see whether that makes a difference.  An MRI today still showed some swelling in her brain but it's better than it was, and yesterday's EEG was normal.  They've started her back on a very low dose of Prograf (immunosuppresant).  A CT of her lungs shows them to be much improved.

The docs' biggest concern is the persistent large-volume diarrhea even without eating.  Dr. Kareem just came in and said that even if it is due to rejection, he would not be able to treat rejection right now without risk of setting off the brain problems again, so there's no point putting her through the scope and biopsy routine.  He doesn't think it is rejection, because in general her lab values are good and getting better.  They're going to try some low doses of antidiarrheals again, hoping to slow the diarrhea without going into another obstructive situation.

Yesterday Karis's TPN was beefed up with more volume and more calories.  Karis needs to get out of bed and get as much exercise as she can tolerate, to try to rebuild her muscle tone and overall wellbeing.  Today though she's exhausted from a long night of fighting high fevers.  Karis hates that cooling blanket, so I hope something will work to put an end to this particular battle!

Thursday, January 22, 2009
(Debbie) Karis's new room on 12 North is 1278.  Her phone number is 412 802-3128.  This room gets a lot of bright sunshine in the morning (whenever there is sunshine to be had in Pittsburgh!).  From Karis's bed she can see the sky and watch it change.

Took us an hour and a half yesterday to get Karis's hair clean, un-gunked and untangled—and the nurse just told us they're going to do another EEG this afternoon!  Aargh!

They've given Karis an air mattress, because of the degree of breakdown of her skin and the fragility of her body.  This morning she sat in a chair for a while and took a few steps with the physical therapist (and me, to manage the IV pole, drainage bags, monitor . . .).  She's resting now from all the activity.

Prayer requests:
1. She's still having a lot of diarrhea, even though taking by mouth only a few ice chips and her medicines.
2. We still don't know how the doctors are going to protect her from rejection.
3. We still don't know about the timing of the ostomy surgery.  Seems to me her nutritional status needs to improve first, but Kareem thinks the surgery may be needed in order for her nutritional status to improve.
4. Please pray that her bedsore will heal.  This is directly related to nutrition.
5. Please pray for good rest, more energy, and the ability to work hard at rehabilitation of her muscles.
6. Please pray that in everything, the docs will make good decisions.
7. Our friend Maria (about the same age as Karis) will have abdominal surgery tomorrow.  Jamila and Jeanette both need our prayers as well.

Thank you!

Wednesday, January 21, 2009 ~ almost 1:00 p.m.
(Debbie) I'm sitting by Karis in the ICU while she receives a unit of blood and checks e-mail on her own little computer.  I'm not kidding!  That's how much better she is!  The NG tube is out, she's breathing completely on her own, and is just waiting to be moved back upstairs, to 12 North if a room becomes available there, otherwise to 11 North.  She's looking forward to really washing her hair.  They don't seem to have facilities for that down here—just the spray stuff that you wipe off with a towel that doesn't help very much.

She just said to me "I'm so spoiled, being in the hospital."  I said, "There are people who wouldn't completely understand that."  She said, "I mean, being so well cared for, having so much help available to me when I need it."

Earlier she said "I'm so spoiled" when the nurse gave her ice chips.  And again when I got out the little laptop her Uncle Steve helped her buy, which is so easy to use in bed.  And when she was told they're going to start physical therapy.

Karis is mostly making sense now.  I asked her what she remembers from the last week.  She says she had a dream in which someone tried to kill her, and she fought back.  Then Dr. Blechl came and fought off the killer.  Her main impression from this and other sedation-dreams is that she wants to live.  She had been discouraged enough the last few weeks that she wasn't always sure about that, if living meant being sick and in the hospital. Now she is seeing as blessing, what a few days ago just seemed like frustration.

So many have cared, and helped, and prayed.  We are truly spoiled—and truly grateful.

Tuesday, January 20, 2009
(Debbie) Lots of forward progress today for Karis: she was taken off the ventilator and extubated this morning, and when the sedation cleared, she had "come back"—much more coherently, at least, than she had been before her seizures.  She's still in and out in terms of being connected to the reality the rest of us are experiencing, but it's so wonderful to see her eyes open and her smile once again lighting up the room.

While Dan was with Karis, a team of neurologists came to see her, explained several things to Dan, and showed him the slides from a second CT scan of the head that was performed.  He saw the areas that were swollen and also two small areas where blood had collected.  That was something we hadn't known about before, and still don't completely understand.  We'll try to find out more about this tomorrow.

David was with Karis when the ICU doctor came by, who explained to Dave his view that the high level of Prograf (immunosuppressant) from last Tuesday was the agent responsible for creating this situation.  The doctor had seen this happen to another patient about two years ago.  This explanation fits the timing:  Karis had an extremely high Prograf level last Tuesday which gave her a severe headache and tremors (the symptoms we're used to from high Prograf levels). That night she started getting confused.  If anyone had known what to look for, they might have been able to take action to head off the damage, which increased day by day until it lead to seizures.  But the docs had reasons to think other things were causing Karis's confusion, so continued giving her Prograf.

At this point, Prograf has been completely stopped for three days, so of course her immunosuppressant level is very low.  This concerns us since Karis went through a bout of rejection so recently.  It will be interesting to see how the docs decide to handle this.

It's possible that Karis may be well enough to get out of ICU and return to 12 North tomorrow.  We've heard that they intend to do an EEG every day for the next few days to keep track of what's happening in her brain (no fun as it keeps her hair sticky and gunky with about 20 wires stuck to her head!).  The ICU doctor explained to Dave that the inflammation in her brain is comparable to a bruise, which will just take time to heal.  She's on antiseizure medication and they're keeping close track of her fluid status and electrolytes, as well as her neurological status.

Dan has returned to DC.  It was such a big help and blessing to have him here these days!  I'm so glad he got to see Karis wake up while he was still here.

Dave threw his back out shoveling snow!  He saw a chiropracter today and is some better, but still has a fair amount of pain, not helped by the chairs in the ICU waiting room . . .

Monday, January 19, 2009 ~ 5:30 p.m.
(Debbie) Karis had an MRI of the brain this afternoon and Dr. Costa just came to tell us the results.  Karis has moderate generalized inflammation (swelling) throughout the brain, of unknown origin.  There is no sign of infection, no problem with any blood vessels, no clue as to what may be causing this.  Dr. Costa says we have to wait it out.  They feel they need to leave her on the ventilator for now because the potential combination of hypoxia with inflammation of the brain could be brain damage.  The docs are analyzing all of her medications, stopping or cutting back on anything they can, in case this is a medication-induced situation.

They are keeping Karis lightly sedated.  She's free to move in her bed (arms or legs) as she wishes, while quiet enough not to be agitated.  She alternates between being more active and apparently sleeping.  She no longer has the EEG (they had to remove it because no metal can go into the MRI machine).

Please pray that whatever has caused/is causing the swelling in her brain will be identified or at least eliminated even if we don't know what it is.  Surgery, obviously, has been indefinitely delayed.  Dan took Dave and me out for lunch at a nearby Italian restaurant, a very nice break from the hospital!

5:30 a.m.
(Debbie) Correction from yesterday: the nurse who had just come on duty told us Karis was not sedated.  The doctor later clarified for us that Karis was actually heavily sedated, and that all that they're doing with her is standard protocol to protect her brain from hypoxia (lack of oxygen).  The EEG can show them when she's developing seizure activity so that they can head it off before it happens again.

Karis has never had seizures before, so this is new territory for us.  Also, because she's in Transplant ICU, it's not a common situation for the medical staff there.  Please pray with us that good decisions will be made.

I deeply appreciate all of the supportive notes and all of your prayers for Karis and for us.  I will respond more personally when I have a bit more emotional "gas."

Sunday, January 18, 2009 ~ 9:30 p.m.
(Debbie) The ICU finally let us in to see Karis. She's intubated and on a ventilator, has a continuous EEG running (with colored wires all over her head), has an NG tube in so they can give her oral meds that way, has a Foley catheter, and has her hands tied down because she's been trying to pull things out. She's not sedated but was completely unresponsive to us. Dave and Dan are in with her now (Dan drove out from DC as soon as he heard Karis had been taken to ICU).

A friend encouraged us by bringing over a lovely supper. Thank you, Holly!

Visiting hours in ICU are limited and always subject to the discretion of medical personnel, even for family members. So if you "signed up" with Alan Komm for regular visiting times, you're off the hook for the time being. We're hoping Karis won't continue in this situation for very long.

6:00 p.m.
(Debbie)  Dr. Kareem just came to talk with us in the waiting room (they haven't allowed us back in the ICU yet since the second seizure).  She had a third seizure which lasted a little longer.  Kareem was there and saw it.  He thinks the problem is some medications she's been on (an antibiotic called Zosyn, Reglan, and a couple of others) which he has stopped.  The CT scan was normal.  Kareem says he thinks she'll come out of this quickly.

4:30 p.m.  Happy 21st, Valerie!!!
(Debbie) Around noon today Karis had a seizure, and was taken to ICU.  Twenty minutes ago she had another one.  They've taken her for a CT scan to make sure it's not a problem in her head.  We've moved all her things out of her room on 12 North and hope we'll be back there soon.  Dr. Kareem wants to do her ostomy surgery Tuesday.  We'll see.

Saturday, January 17, 2009 ~ Happy Birthday, Steve G!
(Debbie) Last night about midnight Karis found enough energy to take a few steps (with support, of course) and to sit in a chair for about 15 minutes.  It was such a delight!  Dave and I were able to sleep better than we have the last few nights.

Today we're seeing more progress.  Almost all of the swelling is gone from Karis's body (now we can see how fragile she is).  Her blood tests are generally better.  She had a blood transfusion this morning and so far hasn't reacted to it.  She's still confused—Dave thinks about ten percent of what she says makes sense—but we see signs of returning awareness.  She asked for her own clothes today, and we took her for a short ride in a wheelchair, just on the 12th floor since she's connected to a cardiac monitor.  She enjoyed looking out a big window at the snow, and commented on the houses marching down the street, which is exactly how they look: row houses going down a big hill.  She has friends visiting from Notre Dame/South Bend this weekend, which is a great treat for all of us.

Friday, January 16, 2009

6:30 p.m.
(Debbie) Karis is finally back from Interventional Radiology, with a new translumbar catheter, and TPN is already running. Took them about 3 hours this time; had some problems getting a new line in, but they succeeded! Thank you for your prayers.

(Debbie) I'm trying to think of a word to describe the last few days.  Karis's mind seems to be largely somewhere other than here; we don't know why.  She had been begging to go home; since we couldn't comply, perhaps this is her way of escaping—or maybe it's some combination of drugs, or some deficit in her body chemistry, or . . .  The last clearly intelligible thing she said was, "Why aren't I getting better?"  Why, indeed.  The docs have done a whole raft of blood tests, but I don't know the results yet.

If we can take a step back, it's actually rather entertaining: we never know what she will say.  Yesterday she pushed the nurse call button several times, and her concerns were to help people get in out of the cold (now that one actually makes some sense!  We're having subzero weather! <:-|), to get away from the bears, to get more dogs in here, and she's been concerned about the Germans.  She's asked me several times to go get her sisters; she's quite convinced they're here and I just need to go get them.  She wants Rachel to read to her, not me.  She wants Valerie to sing to her, not me.  She doesn't understand why I won't take her home.  She is quite sure that I could help the nurses get the people in out of the cold, if only I would.  She was much more talkative yesterday, though we couldn't make sense of much of it.  Today she's more awake, but hardly saying anything.

Physically:

Last night a sad thing happened.  The nurse was changing the dressing on her central line and accidentally cut one of the two ports.  They tied it off to stop the bleeding, but Karis missed a night of TPN because they had to use the remaining port for everything else (antibiotics, electrolytes, etc.).  Some time today, they will try to repair it, and if that doesn't work, try to put in a new line where this one is by running it over a wire.  We hope she'll be back on TPN tonight.

Amazing how things keep happening, one after another after another!  This morning I read to Karis several passages from Isaiah, including 63:9:  "In all their distress he too was distressed, and the angel of his presence saved them.  In his love and mercy he redeemed them; he lifted them up and carried them all the days of old."  God's Presence is with us, even in this distress.

Wednesday, January 14, 2009
(Debbie) Some people have thought Karis would be in surgery today—sorry I haven't communicated more clearly.  Several things have to improve before Karis can have surgery, and we don't know how long that will take.  Her feet are so swollen today that it hurts to stand up.  They're doubling efforts to diurese her, and she continues NPO (nothing by mouth) except sips of water to swollow her pills.  Her breathing needs to improve and various electrolytes come back into balance.  Probably by tomorrow she'll need another blood transfusion, and the last two didn't go well.  The main thing is her nutritional status, which despite the TPN continues to be precarious.  She's very tired, and tired of being sick.  We appreciate your prayers!

Monday, January 12, 2009 ~ Happy Birthday, Bill!  Belated Happy Birthday, Jennie and Kevin!
(Debbie)  Karis didn't feel well enough for much actual celebrating yesterday, though she loved the afternoon visit from a dear friend she hasn't seen for awhile.  She received a blood transfusion, and a couple hours later spiked a fever, turned lobster red and itchy, and her blood pressure bottomed out.  Although a doctor came up from ICU to run the show, they were able to stabilize her in her own room rather than take her to ICU.  We don't know whether she had a reaction to the blood—if so, it's unusual for it to be so delayed—or whether something else is going on.  Today her white blood count is very high so she's back on multiple antibiotics IV and an antifungal, this time oral rather than IV in the hope that it won't be so upsetting to her liver.

Earlier yesterday, Dr. Kareem said to plan on the ileostomy surgery for this Wednesday, but that will be rescheduled if Karis is fighting an infection.  Dr. K is not sure how the surgery will help, but he doesn't know what else to do.  We're reminded of hearing exactly those words spoken by a surgeon in Detroit when Karis was 2 1/2; that time, giving her ileostomy back transformed her life.  (That story is chapter 7 of Worshiping God in the Desert if you want to read it.)  We hope the same will be true this time, since what she's been going through since September feels to us very much like her experience at age 2.

Dr. Kareem made Karis NPO (nothing by mouth) because she was down to 89 pounds (they want her at 110).  Eating sets off so much diarrhea that there is a net negative effect.  Today though they decided she can drink clear liquids, which is a huge relief to Karis.  Ice chips and ice water are among her chief pleasures.  We can't tell yet whether she's gained weight from the TPN because she's overloaded with fluids from the efforts to raise her blood pressure.

Karis's tummy continues distended and very painful.  The docs are letting her have more pain relief, using a PCA (self-administered—a button she can push to give herself pain medication), but the narcotics also "mess with her mind" as she says, making it very difficult for her to read.  She does better at tracking what is read aloud to her.

The CT done on Saturday morning showed no hematoma, but she does have a pneumonia in her left lower lung.  She's back on oxygen and respiratory therapy four times a day, as well as PT.  But the docs think the high white count today is something else, not just the pneumonia.

That's Monday morning in Montefiore 1287!

Sunday, January 11, 2009
(Debbie) Today we are celebrating Karis's three-year anniversary since her five-organ transplant!

We are celebrating family reunions and weddings that Karis has attended, her return to Notre Dame and graduation, Christmas 2006 in Florida with her Kornfield grandparents, East er in Wheaton, Rachel's college graduation, Christmas 2007 in northeast Brazil with our family, her visit to Jill in Texas, her week in Oklahoma with Granddad Elliott before his death, and so many other adventures, friendships, poems written, visits to Dan in DC, sharing of life experiences through conversations, phone chats, and e-mail, in English, Portuguese, Arabic, French, and Spanish.  We are celebrating doctors and nurses and therapists and technicians who have invested so much in Karis of skill and compassion.  We are celebrating the medical and financial resources that have been made available to her, and every friend around the world who has prayed for her.  And through it all, the faithfulness and Presence of God.  We are celebrating God's sovereignty and knowledge of what will come next, knowing that in His economy, nothing is ever wasted, not even pain and distress.

Rejoice with us, give praise to God, and pray with us for the families of Karis's donors, who three years ago and four and a half years ago gave her the gift of life.

Friday, January 9, 2009
(Debbie) Karis has had two days of TPN and has a little more energy.  Correction on what I said before: the translumbar central catheter is in the inferior vena cava, not superior.  Yeah, I know—superior didn't make sense.  Karis is attracting a lot of attention from hospital personnel who have never heard of this procedure.

She's having intense pain in her abdomen and back; suspicion is a possible hematoma from the central line insertion.  She's to have a CT this afternoon to find out whether that is the case.

Wednesday, January 7, 2009 ~ 3 p.m.
(Debbie) Karis just got back, still sleepy, from a surgery to insert a central line directly into her superior vena cava through her back.  (This is a "radical" central line called a trans-lumbar, used more often in children than adults.)  TPN will begin tonight.

This decision was made after several very difficult days with uncontrollable diarrhea (3-4 liters each day).  Karis's mid-line IV came out during the night on Monday and they didn't have a way to keep her hydrated.  Yesterday they worked for an hour and a half in interventional radiology and finally got a peripheral IV into her leg.  (Today's procedure took about two hours.)  For as long as the peripheral IV in her leg works for other things, the lumbar central line will be used only for TPN.

The plan now is to get her stronger on TPN and then do the surgery.  She'll be in the hospital, I'm guessing, at least 3-4 more weeks—though Karis's rollercoaster is always unpredictable.

Tuesday, January 6, 2009 ~ 9 a.m.
(Debbie) I stayed overnight with Karis because she was having so much diarrhea it was hard for the nurses to keep up.  During the night her mid-line IV came out, and attempts to put in a peripheral IV failed, so even though Karis is dehydrated there is no way presently to give her anything by IV.  She will be going down to interventional radiology as soon as they can fit her in, to attempt placement of another line.  Please pray that this will be successful, because without IV access, her situation becomes very complicated.  Thank you.

Sunday, January 4, 2009
(Debbie) When the doctor walked in today, Karis said "I want to go home."  She's definitely turned around from a few days ago, but I'm not sure when the docs will think she's ready to be released.  Two big challenges are nutrition and hydration.  Karis is down 18 pounds now from where she should be.  She eats constantly, but has so much diarrhea she keeps losing weight.  She's constantly experimenting with how much anti-diarrheal medication she can take without shutting down her intestine, but that balance continues to be elusive.  Because she doesn't have enough protein in her blood, she loses fluid into her tissues and dehydrates even when her body is fluid-overloaded.  That ends up causing breathing problems.  Karis is weak and fragile, unstable on her feet or walking, very low on energy.  (Despite all that, she soundly beat Valerie and me at Boggle today, coming up with words like "magnify" on a 4 X 4 letter board while Val and I are topping out at "man" or "game" or "nag"!)

This whole situation has brought Karis and Dr. Kareem to the point of seriously considering a surgery to restore her ostomy.  It seems that her small piece of native colon which was used to re-connect her, is dysfunctional enough that the whole thing is just not working.  Dr. Kareem says she must get stronger in order to tolerate the surgery, but we don't quite see how she will get stronger.  Another issue in regard to the surgery is that she has no apparent access for a central line, which Dr. K thinks is essential for this surgery.  At some point Dr. K intends to give interventional radiology the mandate to discover a creative way to give Karis a central line.  With a central line, she could receive nutrition through her veins, now that her liver function has stabilized.  (TPN is very hard on the liver.)

I don't know what the docs will decide about whether Karis can come home from the hospital for awhile, whether she'll get stronger by being at home rather than in the hospital.  We're taking one day at a time.

As we enter the season of Epiphany, may God's light shine into the dark areas in all of our lives, giving us hope, direction, and encouragement as we worship Him.

Friday, January 2, 2009 ~ Welcome to the world, Sarah Elysse Wegner, born to my nephew Brent and Becky!

(Debbie) This morning I walked in to find Karis sitting up in bed with a smile on her face!  How long has it been since we've seen that smile . . . I don't even remember.  I can't wait for Dave and Valerie to see Karis feeling so much better, able to converse a bit, able to listen to me read aloud, able to crochet for a few minutes since her hands are less swollen, able to read a little of her e-mail, able to stand by herself, able to walk around the unit with support from the physical therapist.  I am so relieved and grateful—the last few days have been tough.

But even as I say that, I realize that I don't know what "tough" means.  A friend's daughter died today awaiting transplant.  Please pray with us for God's comfort to the Chester family.

Thursday, January 1, 2009 ~ Happy New Year!
(Debbie) Rich blessings from God's loving heart to you in this new year!

Karis's numbers, both liver and kidney, are steadily improving, so we hope she'll soon be feeling better. She still has zero energy and is very unsteady on her feet (took a fall yesterday).

Rachel is safely back in São Paulo. David has decided to stay on in Pittsburgh with us a while longer.

Monday, December 29, 2008
(Debbie) Yesterday our family spent the entire day with Karis.  It was a hard day for her physically, feeling completely spent, shaky on her feet, running a low fever and achy all over.  Today though she is feeling much better and has been able to walk a little bit.  Her liver numbers are better today so they decided to cancel the liver biopsy.  They think her liver stress has been caused by the antifungals she was on, because it's been getting better since they stopped those medications.  Neither the CT scan nor the ultrasound showed any indication of what's wrong, so that also reinforces the likelihood that it is metabolic rather than structural or infectious.  This is probably the best of all possible causes, though the docs say they don't know how long it will take her liver to heal.

Dan had planned to return to DC this afternoon, but a car problem has kept him with us overnight.  Rachel returns to Brazil Wednesday, and Dave is scheduled to fly out Saturday.  Valerie is with us until Jan. 9th.

Saturday, December 27, 2008
(Debbie) Yesterday didn't quite work out as we thought.  Following her blood transfusion, Karis spiked a high fever, so rather than coming home, she was admitted to the hospital.  It took about ten hours, using medication and a cooling blanket, to bring her fever down.  One possibility is that she had a febrile reaction to the blood transfusion, but it could also be another in the series of high temperature spikes that she's had of late (like the one that brought her back into the hospital Dec. 15th), which Dr. Kareem attributes to a fungal infection somewhere in her body.  When Karis's blood work started showing stress on her liver, Dr. Kareem cut back on the antifungals, and now they have been stopped completely because of alarming changes in her liver numbers.

Karis now has a definite yellow cast to her skin and eyes, so I was not surprised to learn that her bilirubin, which was already high yesterday, took another leap higher today.  We don't know what is causing distress to her liver.  The docs ordered an additional five tubes of blood for more specialized testing, and both an ultrasound and CT to be done today, and probably a liver biopsy on Monday.  Possible causes of stress on the liver: 1) medication reaction—especially to some of the antifungals (which have been stopped); 2) ascending cholangitis (infection in the liver); 3) obstruction of the bile duct; 4) rejection.  No great choices among them!  Karis will be in the hospital at least through Monday, while they work on figuring out what is wrong.

Liver distress usually causes lack of energy, and that certainly is what Karis is experiencing.  She wants to stay awake and enjoy life, but her body just wants to sleep.  Every so often when I catch her smiling, she tells me she's remembering how special Christmas was.  God is good.

Karis's new hospital room is 12 North (yes!), room 1287; phone 412 802-3215.  Still no sign of her cell phone.  (Karis is distressed not so much about the loss of the phone, but about losing all of the information she had stored in it.)  If she doesn't answer, she's probably resting or gone out of the room for a medical procedure or exam.

Friday, December 26, 2008
(Debbie) Karis DID get to come home, early afternoon yesterday (Christmas Day).  It was so wonderful to be all in one place, away from the hospital!  Karis had more energy than yesterday: she sat through dinner and a family table game before crashing on the couch.

This morning Dave took her back to the hospital for some IV meds (leaving me with instructions to just relax today!).  Karis was dehydrated and needed a blood transfusion, in addition to what she went for originally, so she's ended up spending the whole day there.  We're hoping to bring her home in time for supper, and tomorrow it will be my turn to take her back in for IVs.

Dr. Kareem thinks her liver is reacting to some of the other medications she's been receiving, so they're cutting back as much as they can and hope that her liver will stabilize over the weekend.

Wednesday, December 24, 2008 ~ Merry Christmas, everyone!
(Debbie) Yesterday the docs thought Karis might be able to go home today and come back to the hospital tomorrow (Christmas morning) in order to attend a Christmas Eve service and have some time at home.  Today though she's just not feeling good and they have decided it's best for her to stay here (at the hospital).  We look forward to having the whole family together this evening in her hospital room.

It's not clear what's going on with her.  Liver numbers have shot high, she's running a low-grade fever, lots of tummy pain, and the diarrhea is back.  Lungs are better (she no longer needs oxygen) and the diuresing process continues—she's not as puffy as she was.

Warmest wishes to you for a lovely Christmas, celebrating the mystery of Jesus' birth!

Sunday, December 21, 2008
(Debbie) Valerie and Rachel have been spending a lot of time with Karis while Dave and I have done some other things.  I didn't know yesterday that Karis has pneumonia in her lower left lung, cause unknown so she's receiving antibiotics, antivirals, and antifungals.  The docs say she's improving, so they want to stay the course (she's down from needing 4 L of oxygen to 2 L today).  Dave asked Dr. Kareem whether Karis might be able to come home for Christmas and he said "maybe."  She is exhausted, very low energy.  Good news is that her INR is back within normal limits and she's eating more with less pain, although still quite distended. Diuresing continues slowly.  No success yet in finding her cell phone.  She LOVES having her sisters here!

Saturday, December 20, 2008 ~ Happy Birthday to Becky! Belated Happy Birthday to Sarah and Nathan!
(Debbie) I'm afraid we've been in "survival mode" and not keeping up very well with a lot of other things, including e-mail and updates.  Thank you for all of your encouraging e-mail messages!  I do intend to respond; just not managing it at present.

Karis is semi-better in regard to the bowel obstruction.  The NG tube was pulled last night, and she's been allowed to eat a little bit of Cream of Wheat, which so far has been OK although her tummy is still very distended and painful.  I think the idea is that eating a bit may help things to start working better.  She hasn't had more fever!  She's on two antibiotics that require IV Benadryl several times a day to keep her from breaking out, so she's been pretty snowed.  Multiple attempts yesterday to start an IV of the caliber necessary for the dye for the angiogram were unsuccessful, so that has now been put off until Monday. 

Meanwhile, her INR (measure of blood coagulability) went up to 5, even without taking anticoagulants for several days (they like it to be between 2 and 2.5).  It's now down to 3+, but that's still too high for good coagulation.  Some of the places where she was stuck in the morning to try to start the IV were still oozing blood last night, and she has large bruises up and down both arms.  Good news is that she hasn't bled any more from her intestine!

Because of low albumin in her blood (from not eating), water from her blood leaked into her tissues and into her lungs yesterday to the point of not being able to breathe well without oxygen.  That problem is being addressed, but it will take a while, so if you see her don't be surprised that she's all swollen up—it's temporary! Once she's less swollen, an attempt will be made to insert a PICC.  (If that had been done at the beginning of the week, it would have saved her a lot of grief, but I guess no one knew how complicated her situation was going to get.)

We know that it's a busy time for everyone, but if you would like to visit Karis, it would probably be good to call first—it might be frustrating to go all the way to the hospital and find her zonked out on Benadryl or out of the room for an exam or procedure or a walk.  Unfortunately, Karis has lost her cell phone—one guess is that it was in her bed when the sheets were gathered up for the laundry.  Her hospital room (Montefiore 11 North room 1186) phone number is 412 802-3574, or you can call me (574 339-3350) or Dave (214 709-2702).  We'll let you know when we give up hunting for Karis's phone and get her a new one.

Wednesday, December 17, 2008
(Debbie) These updates don't seem to fit the spirit of the season!  I wish I had more cheerful news to share.  Today was very difficult.  Karis dealt with severe intestinal pain and ended the day with a full-fledged bowel obstruction as well as fever of 102.  An NG tube was placed to try to deflate her abdomen.  Dr. Kareem cancelled the CT/Angiogram for the time being.  He says Karis's symptoms are consistent with a fungal infection, which could be anywhere in her body.  She's back on multiple IV meds, through her third IV of the day.  Rachel is spending the night with her at the hospital.  Valerie arrives tomorrow from Italy!

Tuesday, December 16, 2008
(Debbie) Karis's fever gradually climbed to 101 this afternoon.  Still not clear what's going on, though it may include a urinary tract infection so they've started antibiotics.  She's to have a 3-D CT-angiogram tomorrow to check out what's happening with the blood clot in her celiac artery, which supplies the lower intestine.

Monday, December 15, 2008
(Debbie) Friday after Karis's PT session I said, "Well, you're free until Mon. morning's blood draw!  A whole weekend to use your time as you please!"

Not quite . . .

Saturday afternoon Karis was hospitalized again.  Diagnosis: adrenal insufficiency, dehydration, low albumin (protein in the blood), low magnesium . . . in short, a bunch of things that needed to be corrected with IV's.

The docs let her out Sun. afternoon, on condition that she show back up at the hospital early Mon. morning for another infusion of albumin.  Karis enjoyed going to church Sunday evening and arrived home shortly after our friends Sharon and Carissa arrived from Harrisburg to spend the night before Carissa would have transplant clinic Mon. morning.  We made plans to drive to the hospital together the next morning (this morning).

During the night, Karis had a LOT of tummy pain.  When I woke her up this morning, she felt warm, so I stuck a thermometer in her mouth—101.5!  I informed the transplant coordinator on call, who of course said Karis had to be admitted.  So we quickly packed up our go-to-hospital stuff and have been here all day.  Karis hasn't again spiked another high fever but continues with a low-grade one, and still a lot of pain, which has seemed to increase through the day, requiring as much IV pain medication as they'll give her, along with an oral pain med.

A CT was done, which came out normal, and her blood work doesn't look like an infection.  So we're confused.  We don't know what is going on exactly, and Karis is having to put up with a hospitalization without a clear treatment plan.  They're going to start preparation tomorrow for some more comprehensive testing on Wednesday.  She can't go home because she doesn't think she'll be able to manage the pain at home on just oral meds.  She hasn't felt good enough to work, so while she's been awake we've mostly been reading a book out loud together.  The hospital routine has become less than exhilarating.

It would be great if Karis could feel well enough tomorrow to get some work done!

Thursday, December 11, 2008
(Debbie) We've been asking of God that Karis not need another surgery.  He is answering our prayers!

We got home from clinic a little while ago, feeling very hopeful that Karis could actually just get well!  A big surprise: the scope from yesterday showed that Karis's small piece of native colon (that was described Nov. 27 as "severely diseased") is healed!  The doctor who did the scope didn't find anything to take a picture of—he said it looked perfectly normal.  (Dr. Kareem's observation about this: "Some things in medicine we never understand.")  It feels so much better to have this half of the problem resolved!  We don't know what caused the disease in Karis's colon nor what (medically) made it heal, but we are very grateful that it has!

The other half of the problem, the lower part of Karis's ileum (transplanted small bowel), is not completely healed yet.  About 10 cm is still inflamed, irritated, and oozing blood, but it looks better than it did on the last scope.  The docs voluntarily said that we should delay discussion of the surgery option to see whether the healing continues.

Dr. Kareem believes that the distress in the ileum has been caused by "showers" of small emboli (blood clots) that have compromised the blood flow to this part of her intestine.  He ordered a 3-D angiogram for next week to check the status of the blood clot that we already know she has in her celiac artery and to see whether any other clots have formed.  Meanwhile she continues with daily injections and with oral anticoagulants.

Karis had another injection this morning to stimulate red blood cell production, trying to avoid the need for another transfusion.  Please keep praying for control of diarrhea, which will help the ileum to continue healing and will allow Karis to better absorb nutrients (her weight was down a little bit today).  We're looking forward to a weekend at home, without trips to the hospital until her next blood tests Monday.

We are encouraged!!

Tuesday, December 9, 2008
(Debbie) Karis will have her scope and biopsies tomorrow morning.  Please pray that God will make clear to us and to the surgeons if there's a way for her NOT to have surgery.  Thank you!

Monday, December 8, 2008
(Debbie) Karis did have a fast turnaround at the hospital.  They gave her a blood transfusion and an injection to stimulate production of red blood cells, and let her out yesterday afternoon in time for evening church (complete with a bright blue mask to help protect her from infection!).  Karis was delighted about getting to go to church, because she hasn't been able to go for the last two months.

We then had to go back to clinic this morning.  The consensus is to give it a couple or three more days to see whether the bleeding slows down or stops.  If she needs another blood transfusion by the end of that time, it may be time to bite the bullet and do surgery to remove the diseased portion of her intestine and restore her ostomy, which would then be permanent.  That's a hard reality to comtemplate, but continuing to live the way things are is not easy either.  She seems to be in the same situation she was in five weeks ago.

Another scope and biopsies will be scheduled for later this week to be sure she's not flipping back into rejection.  That will also give the surgeons more information about the condition of the intestine, which will help in making the decision about surgery.

We've been meditating on passages in Isaiah 40-43, and finding encouragement from God there.

Saturday, December 6, 2008
(Debbie) Karis has been having bloody stools since last night, so Dr. Kareem says we need to take her back to the hospital.  We're very sad about this.  Pray that it will be a fast turnaround!  We'd much rather be baking Christmas cookies and enjoying the fireplace at the lovely home where we're staying!

Thursday, December 4, 2008
(Debbie) Karis had a wonderful day at home yesterday.  She had more energy than we've seen for awhile—we all enjoyed NOT being at the hospital!

This morning she had physical therapy and then clinic.  (Clinic involves blood tests and then a several-hour wait until the results come back during which time a nursing assessment is done and transplant patients catch up with each other in the waiting room.  Finally the doctors arrive and start the actual consultations.)  Today we completed the routine at 3:00 p.m., earlier than often is the case!  Karis needs to gain at least 12 pounds ("It's harder than you think!" she says.)  Karis's blood work showed that she may have an infection brewing (her white blood count is up), so she has to go back for repeat bloodwork tomorrow morning.

Just now she is snuggled on the sofa, resting from the tiring hours at PT and clinic, listening to a recording of the memorial service for her grandfather Kornfield, which just arrived in the mail. We have just celebrated the purchase of a plane ticket for Valerie, who has decided to come from Italy for Christmas.  We seem to all be feeling the need for some family time together.

Tuesday, December 2, 2008
(David) Miracle of miracles, Karis was released from the hospital at the end of the afternoon today!  She went in on November 2 and came out on December 2.  We truly identify with the Psalmist when he said, “When the Lord brought back the captives to Zion, we were like men who dreamed.  Our mouths were filled with laughter, our tongues with sons of joy.  Then it was said among the nations, ‘The Lord has done great things for them.’ The Lord has done great things for us, and we are filled with joy” (Ps 126:1-3).

The doctors have wanted Karis to leave the hospital as soon as possible since she could so easily get another infection there.  (2,000,000 get infections in hospitals in the US per year).  With several adjustments in medications in the last 30 hours, Karis responded well, having less pain and less problems.  She needs 20 different medications daily, some 3-4 times a day, making for a potential of about 50 in 24 hours.  And she needs to return to the hospital to have blood tests and see the doctor on Thursday for some further adjustments.  If all goes well, she’ll continue going to the hospital twice a week until she’s stable enough to go once a week.  She needs to wear a mask in church or in other places where there are many people. 

The EBV virus that got up to 1,119,000 now is at 2,700 — the lowest it’s been for at least six months.  That giant and the others look like they’re under control.  Party with us!  Thanking the Lord and asking Him that she might continue well, stay out of the hospital and finish her theses.  Alleluia!

Saturday, November 29, 2008
(Debbie) A new CT was done which showed "resolution of previously noted pneumatosis in the ileum," so Karis's three-day fast was worthwhile.  In consequence, Karis has moved through clear liquids to full liquids and tonight, a little bit of soft food.  She's VERY happy!  The trade-off is diarrhea again.  Dr. Kareem wants her to take things s-l-o-w-l-y, to not reverse the good progress she has made—a challenge, given how hungry she is!  They're going to continue IV antibiotics until Monday, and then reevaluate.

Friday, November 28, 2008 ~ 9 a.m.
(Debbie) Dr. Wu just came by to tell us the results of the biopsies taken Wednesday.  He said they are perhaps a little better than a week ago, not in active rejection but still needing a lot of healing.  Probably a repeat scope and biopsies will be done early next week.  Meanwhile, Karis will continue NPO to give her intestine the best chance to heal.

Some people have asked about Karis's PICC—sorry, I forgot to say that they were successful in placing a PICC (midline) in her left arm and removed the one in her right arm that was hurting.  It wasn't infected, just out of place.  They can get blood now from the new PICC, which means no more poking around with needles every day, a great relief to Karis!  Her arms and hands are all black and blue—now they can heal too!

Thursday, November 27, 2008 ~ Happy Thanksgiving!
(Debbie) Dr. Bond just came by and very patiently explained things to us and answered our many questions.  Bottom line: Karis has an area in her lower ileum (near the place where the transplanted intestine joins her small piece of native colon) that has air pockets in the lining of the intestine (a condition called pneumatosis).  This can be caused by a number of things, including infection, rejection, and inadequate blood flow (called ischemia).

The pneumatosis is sufficient cause for concern that the docs have ordered complete rest of her bowel, to give it a chance to get well.  We are hopeful that this will help—it's been almost four weeks since Karis started having pain, inflammation, ulceration and bleeding in her lower bowel.  Later this afternoon the results of the biopsies taken yesterday should be available, which will let us know whether rejection is again a factor, or whether they can maintain her in a lower level of immunosuppression to help her get well and not be so vulnerable to infections.  In a few days they will do another scope to see whether things are improving.

Karis's big treat of the day is a popsicle.  She can also suck on hard candy (like a peppermint).  They've beefed up her IV's so that she's getting some calories that way.

The pain in her gut has actually gotten better since she stopped eating, so that's a big plus (she hasn't needed as much pain medicine).  Her headaches are better also.  She says this experience with headaches helps her understand what other people deal with, like her friend Margaret from Ascension.  She's very thankful today that we're here with her, that three friends from ND are also here visiting, and that she's on 12 North, where the nursing care is excellent.  Hey, maybe by Christmas she'll be well enough for a holiday feast!  We do have so much to thank God for.

Wednesday, November 26, 2008
(Debbie) People have been asking what's happening with Karis.  We are quite confused about that, and probably won't be able to talk with a doctor until tomorrow.  A CT was done last night, and endoscopy with biopsies late this afternoon, with the consequence that Karis is being kept NPO (can't eat or drink), but we don't fully understand all the reasons why.  We'll explain better as soon as we can!

Happy Thanksgiving!!

Monday, November 24, 2008
(Debbie) Bottom line for prayer: fever, severe headache, difficulty finding venous access.

If you've tracked with us for awhile, you know that Karis lives on a rollercoaster.  Yesterday morning the docs were talking about sending her home Monday (today) since the hospital is a dangerous place for someone as immunosuppressed as she is.

Karis didn't feel well during the afternoon, and in the evening she spiked a fever.  We don't have blood culture results yet but suspect her PICC (midline), since it has been causing her some pain.  Two unsuccessful attempts were made to start a peripheral IV so that the PICC could be removed.  Part of the difficulty is that Karis's arms are very swollen (as are other parts of her body), from the combination of steroids and poor nutrition (she eats a lot but isn't absorbing well).  When we went home to sleep last night, the plan was to try to place a different PICC in radiology this morning.  Meanwhile they gave her some mega-doses of broad-spectrum antibiotics to immediately curb whatever may be causing the fever.

At about 2:30 a.m. we received a distressed phone call from Karis: "Mama, help!  Please come."  Karis was having one of her worst headaches in history and needed support.  Extra doses of Tylenol, Dilaudid, and Zofran calmed the pain and nausea enough that she could eventually sleep.  We don't know what caused the headache, which continues, though under better pain control. Don't think she'll be going home today . . .

Friday, November 21, 2008 ~ 5:55 p.m.
(Debbie) Come join our party!  We're dancing and praising God—the doctor just came in and said the biopsies show NO MORE ACTIVE REJECTION!!  There's still a lot of healing that needs to happen, but things are no longer getting worse. 

And her EBV level is down to 770,000—about a third lower than the last check.  (Who would ever imagine we would be happy about that number!)

We are SO relieved and grateful and hopeful!  The doctor even said that Karis might be able to go home from the hospital soon—amazing!  There are a few things that need to get evened out still, but we have definitely made a huge stride forward.

Karis is not feeling very good yet.  She still has a lot of pain, and constant hunger, since whatever she eats goes right through her.  She's achy and draggy from the medications she's been bombarded with.  She's receiving a blood transfusion now, which should give a boost to her energy level. 

Praise the Lord!!!!!

OUR HOUSING NEED HAS BEEN MET.  Many thanks to everyone for your prayers and suggestions! [Address remains the same for mail.]

Thursday, November 20, 2008
(Debbie) Karis had an endoscopy and a colonoscopy and biopsies today.  We won't know the results of the biopsies until tomorrow.  Good news: from the top, the intestine looks a lot better.  Bad news:
from the bottom, it doesn't; the small extension of native colon and about 5 cm of transplanted ileum are still in terrible shape.  However, above this, her ileum looks much better.  The doctor who did the scopes suspects that the problem may be a lack of adequate blood flow, but we won't really know until the biopsy results come back.  The docs will analyze everything and decide whether to change their approach to treatment.

Wednesday, November 19, 2008
(Debbie) I just had a long talk with Dave, who told me about the precious time they had today in Sebring, FL, celebrating the 84 years God gave to his dad.  Dave and Rachel will be arriving back in Pittsburgh tomorrow evening.

Karis did something really fun this morning—she went to the hospital beauty salon and got her hair cut!  It looks terrific; Lisa did a great job around the mask Karis had to wear.

Since we got back to her room, Karis has had one IV medication after another.  For awhile she was able to stay up and work on her thesis, but once they doped her with Benadryl for some of the stronger meds, she's been crashed in bed.  She's had a lot of pain and a lot of intestinal bleeding today.  The docs decided to put her on Rituximab, a chemo-type drug which can fight the EBV and the rejection at the same time, but carries high risk for nasty side effects.  We both had to sign a consent for her to receive this drug.  Dr. Costa is hopeful that it will make a difference and not let the rejection get too out of hand while we're fighting the EBV.  This is in addition to all of the other drugs she's already on, which are a boatload.

Supper has just arrived!

Tuesday, November 18, 2008 ~ 4:30 p.m.
(Debbie) We were just informed that Karis's EBV level has leaped from 50,000 to over a million.  Dr. Costa says this is due to the OKT-3 wiping out her immune system, so whatever organisms are in or come into her body have total freedom to grow.  They've had her on three antibiotics, an antifungal, and two antivirals already, but apparently the antiviral protection has not been adequate.  Dr. Costa says they must stop the OKT-3 (effectively stopping the fight against rejection) in order to treat this infection.  They can't do both at the same time.  It's a huge balancing act.  Karis is receiving right now her first doses of two powerful antiviruses.  One of them, Cytogam, gave her extremely painful side effects in 2004, but Dr. C doesn't feel we have a choice about trying it again.

The danger of the high EBV is that it has a high probability of causing cancer.  The danger of the rejection, of course, is that it can destroy Karis's intestine.

We're caught squarely on the infection/rejection highwire.  FOR THE TIME BEING, DR. COSTA HAS ASKED US TO LIMIT VISITORS, while Karis is so vulnerable to infection.  Please call before you come, understand if we say no, and if we say yes, be prepared to gown, glove, and mask.  Dr. C says he doesn't want three-four people here at a time, as has so often been the case (and as Karis has so enjoyed).  Do feel free to call Karis though—for now, she'll have to enjoy your company more often by phone and less in person.  If she can't talk to you at the time you call, leave a message & she'll call you back when she can.

Because of the necessity of stopping antirejection treatment, Dr. Costa says there's no point in doing the scope and biopsies tomorrow, because they won't be able to take action on any information that these tests would provide.  He wants to focus on the EBV for a few days, getting it back under control, and then do the endoscopy and biopsies when we're ready to swing back around to treating the rejection again. 

Dave has decided to come back to Pittsburgh on Thursday, rather than returning to Brazil.  We are very interested in finding a place for our family to live for the next few weeks that will put less pressure on the Browns' home.  Their unfailing generous hospitality is wonderful, but they're already running a pretty full house.  If anyone in the Pittsburgh area knows of a housesitting situation, for example, please let us know—preferably, near the hospital in Oakland.  (We don't ask much!! :-))

Tuesday, November 18, 2008
(Debbie) After a somewhat rocky night (pain medicine was increased to help her cope), Karis is feeling better this morning and has not had more bleeding today.  She was able to actually sleep a good part of the morning.  She will have an endoscopy and biopsies tomorrow (both upper and lower).

There is good news too about my nephew Mike: his symptoms abated, so after spending the night in hospital, he was allowed to go home this morning without surgery.

Our son Dan will be joining the gathering family in Sebring, FL for his grandfather's memorial service tomorrow.  Today Dave, his mom, and Rachel are visiting his Aunt Helen (his dad's twin sister) in Bradenton.  Aunt Helen had a stroke a few weeks ago and has moved into a nursing home.  We hope she'll be able to travel to Sebring for the service tomorrow morning.

Thank you to each one who has sent encouraging words to us.  We are grateful for your prayers and for God's renewed mercies each day.  Our OC mission pastor sent us this lovely reminder from Deut. 33:25:  "Your strength will equal your days."

Monday, November 17, 2008 ~ 2:30 p.m.
(Debbie) My nephew Mike (Karen's son), driving home today from Pittsburgh to Cresskill, NJ, left here not feeling well and has developed all of the symptoms of appendicitis.  Please pray for him and for his family.  Life has been crazy!

Monday, November 17, 2008
(Debbie) So much has been happening that we haven't managed to keep up with updates.  Friday during the memorial service for my father, my cell phone rang.  I simply turned it off and didn't check for messages until after the service and the reception following.  Turned out the messages were to let us know that Dave's father, Bill Kornfield, had just died.  He had a normal morning Friday, ate lunch, lay down for his nap and woke up in heaven.

After the immediate shock, we realized that the timing (as well as the gentle passing) was amazing.  Dave already had a ticket to fly to Florida the next day to visit his parents.  He already had the time blocked out for this purpose.  It could have happened when he was in Brazil and totally engaged in ministry (which is the case most of the time).  Dave stayed with me in Tahlequah Friday evening and flew out the next morning as planned, joining his brother and sister-in-law who had flown over from Texas.  His sister Kathy will be arriving today from Bolivia and the memorial service is scheduled for Wednesday morning at 10:00 a.m.

Our daughter Rachel made a last-minute decision to fly up from Brazil, arriving in Tulsa Friday morning in time for the memorial service for her granddad that afternoon (thanks to the generosity of friends who paid for her flight).  We have just bought a ticket for her to fly to Florida for her to attend the memorial service Wednesday for her other grandfather.

Early Saturday we drove with most of my brothers and sisters from Tahlequah, OK to Independence, KS to bury my father's cremains in the family plot.  After lunch with relatives there, Rachel and I drove in tandem with my sister Karen and her children to Wheaton, spent the night there after delivering Ben and Jessica back to their dorms at Wheaton College, and drove to Pittsburgh yesterday (though not in time to see my son Dan, who along with two DC friends had spent the weekend with Karis but had to drive back to DC).  Five of us walked into Karis's hospital room around 6:30 last night.  Karen, Mike, and Bethany left for their home in New Jersey this morning (planning to stop by the house in Hershey, PA they're moving to next week), and Rachel is catching up on sleep before traveling again tomorrow to Florida (her flight leaves 6:00 a.m.).

So, what's happening with Karis:

1. The rejection is being treated with steroids and OKT3, the biggest gun in the anti-rejection arsenal.  She's to have another endoscopy and biopsies tomorrow (Tues.) to determine whether this treatment is being effective.  Concerns are increasing (rather than decreasing) abdominal pain, and increasing bleeding from her intestine.  We don't know whether this is due to rejection or due to the problems in her small length of native colon.  Based on the tests tomorrow, the treatment regimen will be reevaluated.

2. As I am writing this, a doctor is here trying to draw blood, since the nurses and the IV team have given up.  They are not getting a blood return from her PICC (actually a mid-line catheter since no central access is available) nor from peripheral veins.  So they haven't been able to do blood tests.  The doctor has been trying for about half an hour without success yet.

3. Karis is very hungry, but everything she eats goes right through her.  Weight loss is inevitable.  She has had some headaches and fevers (side effects of the OKT3) and difficulty sleeping (side effect of the steroids).  Her eyes are very tired, but she has maintained her cheerful spirit.

Hallelujah!  I was just going to send this when the doctor got blood!!  (Just as I wrote Hallelujah, the doctor said Hallelujah!)

Thursday, November 13, 2008
(Dave) Karis just had an endoscopy from above under anesthesia.  It shows that she has ulcers all the way through her intestine from top to bottom.  Rejection works its way from the bottom up, so this rejection is serious.  Karis cannot lose this intestine without losing her life.  The doctors have found no veins for a central line.  Even if they looked harder and found one, she would not be a candidate for a new intestinal transplant because the other four organs that were transplanted would not handle a different intestine.  So we need this to turn around and, if at all possible, quickly!  The anti-rejection treatment is serious with serious side effects, some short term, others long term.  For instance, Karis's loss of blood to her hips and consequent hip replacement is one of the side effects of rejection measures in 2004.  Debbie and Rachel (who has come to the States in time for her grandfather's memorial service) will leave Oklahoma as soon as possible after the memorial service to drive back to Pittsburgh.  Pray for all of us as we head into a new round of roller coaster ups and downs over which, once again, we feel no control.

Wednesday, November 12, 2008 ~ afternoon
(Debbie) Karis called a little while ago with results from the biopsies.  She is in rejection.  They will be starting the heavy anti-rejection medications this evening (OKT-3 and mega-doses of steroids).  Dr. Kareem thinks the problem in Karis's small section of native colon may be Crohn's Disease.  He is not sure yet what the implications of that may be.

Dave left for the airport just after that meeting with Dr. Kareem.  He's coming to spend three days with me here in Tahlequah (we haven't seen each other for two months), including the Friday memorial service for my dad.  After that he'll be spending several days in Florida with his parents (his dad is not well) before returning to Brazil.  With Karis's current situation, it looks like I won't be returning to Brazil as soon as we had thought.

All of this sounds like a lot, but we have been surrounded with such love and care that the impact of it all has been diffused.  We are so grateful to be part of the Body of Christ, here in Tahlequah, in Pittsburgh, in Sebring, in Brazil, and in every other place where people have cared enough to hold us up before God's throne.  Thank you.

Wednesday, November 12, 2008
(Debbie) My father died at 6:00 this morning, very peacefully—one minute he was breathing, the next he wasn't.  My brother Steve was with him at the time.  We are planning a memorial service for 2:00 p.m. Friday.

Tuesday, November 11, 2008
(Karis) Hi!  This is Karis writing, from my hospital bed on my father's laptop.  I had a second endoscopy today, which showed that the treatment we have been following thus far has not been working.  My colon is very diseased.  My dad had to make a split second decision to miss his flight to Tahlequah to be with Mama and chose to stay here in Pittsburgh with me for a couple more days.   We have begun an IV antiviral treatment.

(David) P.S. Pain continues to roam between four and six on a scale of ten and Karis has had severe diarrhea. Pray that the 8 inches of colon can be recovered. If not, Karis may face another major surgery to remove it; we don't know yet whether that would require a new ostomy. In addition to severe ulceration in the colon, there is now some ulceration in the transplanted intestine. Possibly this is due to a virus called cytomegalovirus (CMV), although rejection is not yet ruled out. We hope to have the biopsy report tomorrow.

Friday, November 7, 2008
(Debbie) Karis is feeling some better, though still on IV pain medication, and has been able to eat a bit more.  Her dad is flying from São Paulo to Pittsburgh tonight (arriving tomorrow) to be with her for a few days.

Some people who have been praying for us in regard to my dad have asked about my mother.  She is here, in the same facility as my dad.  She has Alzheimer's so it's hard to know what she understands.

Thursday, November 6, 2008
(Debbie) Friends in Pittsburgh are doing a great job of supporting Karis during this hospitalization.  She's now on three IV antibiotics.  She's had enough nausea and pain and diarrhea that it's been hard for her to eat, so she's been losing weight.  The docs would put her on TPN but she doesn't have veins left for a central line (all of her major veins are obstructed with scar tissue).  Please pray that she'll be able to tolerate food and start getting stronger.

Another challenge is that she's lost a lot of blood because of the ulceration in her small bit of native bowel.  She'll be receiving a blood transfusion this morning.

My dad continues to bless us even as his strength is failing.  Most of the time he lies quietly with his eyes closed and we can't tell whether he's sleeping or just resting.  But when someone speaks directly to him, he smiles even before he gets his eyes open.  His smile lights up the room.  He is so warm and gracious with each person who comes to see him or to serve him in some way.  It is a privilege to share this sacred time with him.

Tuesday, November 4, 2008 ~ p.m.
(David) Karis is improving and friends are taking good care of her in Debbie's and other family's absence. She got permission to leave the hospital and get off of IVs for an hour so she can vote. The pain which was up at 8-9 on a scale of 10 is down to 5-6. She's been given permission to eat supper today, so that may raise the pain. We'll see. (Two election officials went to Deb's Dad's room and helped him vote). :-)


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