-Karis Kornfield

Blog Sobre a Karis 6 ~ Updates on Karis
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6 ~ updates on Karis

Sunday, August 20, 2006
(Debbie) We have been joyfully helping Karis settle into her apartment at Notre Dame, Val into her dorm, and accompanying Valerie through her freshman orientation process. Both girls are doing great, very excited to be here. Karis enlivened things by falling off her bike Thursday afternoon, impressively bruising one knee and pulling a tendon in the other, such that she hasn't been able to walk. Kindness of the university, she is now getting around on a bright red electric scooter. Watch out, world!!

A challenge Karis faces is discerning when she needs to stop and rest. She tends to go full speed ahead (on the scooter as well as the rest of her life :) until she's completely depleted and then has to take significant time out to recuperate. It's SO wonderful though for her to be back into "normal" life, in a place where most people have no idea what she's been through in the last 30 months and just treat her like everyone else . . . well, like anyone who fell off a bike and zooms around on a bright red scooter . . .

Classes begin Tuesday. That's when I intend to catch up on e-mail, which I haven't had time for at all for the last ten days, and very little for the last month. Thanks for your patience! And for your supportive prayers for Karis as she heads into this huge, happy challenge!

Monday, August 7, 2006
(Debbie, still in Colorado) I just talked with Karis. She had her final clinic visit today, and was full of good news. She's been feeling good and her blood tests were perfect. She will still have weekly blood tests to monitor everything, but as long as everything's normal, the docs said she doesn't have to return to Pittsburgh for a check-up until Christmas time!!! Before, they had said she would have to come back to clinic once a month. This will help a lot with college, because Karis won' t have to make a several-day trip every few weeks. Looks like we have all green lights re. returning to Notre Dame!! Praise God! Our plan now is that Karis and Dave will leave Pittsburgh next Monday; Val and I will follow on Tuesday.

The transplant team has successfully brought Karis' s immunosuppression level low enough that they're not as worried about infection as they were. The docs have decided Karis can eat in the dining hall, which will be a huge help to her. And she only needs to wear a mask when around people who actually have symptoms of illness. However, she's supposed to wash her hands about a million times a day, :) since that's the most common way that infection reaches our bodies. The one thing the docs didn't agree to was Karis's request that they remove her G-tube (tube into her stomach). Maybe at Christmas time . . .

Thursday, August 3, 2006
(Debbie, writing from Colorado) Sorry we haven't been posting updates. We haven't had easy internet access, tho we've been having a great time with about 20 missionary and OC staff families in the lovely mountains south of Colorado Springs!

Karis was released from the hospital a week ago, and had the delight of traveling to Washington DC for the weekend to help celebrate her brother Dan's birthday. Thanks to the transportation help of friends, she's been catching up in her community college class (had the final exam tonight), has continued her physical therapy, weekly blood tests, clinic visits, etc., as well as balancing fun with rest. I'm impressed that she's been remembering to take her pills seven times a day!

Valerie is scheduled to fly back to Pittsburgh on Saturday. If Karis continues to do well, I'll be staying another week in Colorado with David at a retreat of Mentorlink leaders from around the world, getting back to Pittsburgh for the weekend before we move from Pittsburgh to South Bend on August 15-16th. Karis has re-entry orientation at Notre Dame starting Aug. 17th, the same day Valerie starts international student orientation, and both girls begin classes the following week. It's very exciting to think of making this huge step back to "real life"!!! Karis will be living in a campus apartment, and Valerie will be in a dorm. I'll stay nearby with friends until the time seems right for me to move back to Brazil. (Dave plans to return to Brazil on Sept. 4th.)

If this all happens, it will conclude 2 1/2 years of living in Pittsburgh. We will take away precious memories of God's faithfulness to us through the generosity and kindness of Battle and Carol Brown, the Church of the Ascension, Three Nails, and other wonderful friends from Pittsburgh and many other places, as well as by the transplant team, nurses, and all of the skillful, caring folks at Children's Hospital, at the rehab hospital, the home health care agencies, and insurance agencies we've been privileged to work with. We thank YOU, too, for being part of the network of support that God has used to bring Karis and our whole family through these amazing, difficult, challenging, painful, and triumphant days, weeks, months, and years.

If you don't see any new postings in the next couple of weeks, that means Karis is fine and we're proceeding with our plans to move to Indiana. As always, thank you so much for your prayers for us.

Wednesday, August 2, 2006
(Rachel) I was supposed to send this update on Monday, but life ran away with me! Karis was released from the hospital as planned, and was well enough this weekend to fly to Washington DC and celebrate Dan's birthday on Sunday. Things seem to be going well! The planned move to South Bend is only two weeks away!

We continue to covet your prayers that that process will go well.

Monday, July 24, 2006
(Debbie, writing from Colorado)  I talked with Karis last night and she had good news:  since the line was removed on Thursday, her cultures have been negative!  She will continue with IV antibiotic treatment in the hospital until Thursday and then will be released to go home.  Hurrah!

Friday, July 21, 2006
(Debbie) Karis is doing well.  Looks like Dr. Sindhi was right about thinking the catheter was obstructing blood flow in some way.  Since it came out yesterday, Karis is markedly less swollen.  So far, the IV inserted in her arm yesterday is still functioning.  She was granted a pass and came home for a few hours this afternoon to help work on packing her things in preparation for our move to South Bend August 15th.  She and Val managed to pack her books, and that was all the energy she had, but it was a step forward!

Today the home health care company picked up the IV pump and pole that Karis has been using here at home, since she won't have any more home IVs!!!!!
 
Valerie and I are flying to Colorado tomorrow, where we'll be participating in a two-week "Personnel Enrichment Program" at our mission headquarters.  Dave will meet us there on Sunday, flying from Detroit.  Friends are mobilizing to help Karis with her various needs while we're gone.  About a week of that time she'll still be in the hospital.  Once she gets out, she asks for prayer that she'll remember to take all her meds at the right times (at present she's taking pills seven times a day).

Thursday, July 20, 2006
(Debbie) Karis's Broviac (central catheter) was removed in the OR this afternoon.  She came through the procedure well, despite a surprise bleed that was discovered when she was transferred back to her bed on 7 North.  We hope that with the line out we'll soon start seeing some negative cultures, which hasn't happened up till now.  What we HAVE seen is good absorption of sodium bicarbonate:  thanks for praying about that!!!!

What we can pray for now is that her peripheral IV will last as long as possible, and that Karis will find ways to make this hospitalization a positive experience instead of just a big frustration.  A lovely visit from out-of-town friends this evening was an encouragement in that regard!

Tuesday, July 18, 2006
(Debbie)  Good news!  The transplant docs have decided to pull Karis' line on Thursday (this is a surgical procedure).  If/when she needs electrolyte supplements, these can be given peripherally.  (Please keep praying that she'll absorb sodium bicarb through her intestine.)  The infectious diseases docs say that once the line is out, 7 days of IV antibiotics should do it for the infection in the blood.  This will be done through peripheral IVs.

 
What's tough for Karis is that she'll have to stay in the hospital for those seven days, because they don't let people go home with peripheral IVs.  BUT, once she does go home, she won't have a line to worry about anymore!!!!  Many things will be simpler.
 
Hurrah!!

Monday, July 17, 2006
(Valerie) Apparently, I am the apointed writer of "specifics." 

Unfortunately, there aren't many, as far as answers and explanations are concerned.  Karis had a venogram today, but it did not seem to show any narrowing of the veins which would account for the uncomfortable swelling of her face, neck, and shoulders.  She still feels pretty draggy and tired much of the time.
 
The infection in the catheter (probably VRE) presents a big prayer request.  The best of all worlds would be to pull the catheter once and for all, eliminating the possibility of future line infections.  The only thing impeding that right now is Sodium Bicarbinate.  She has been taking large amounts of it orally, but she has not absorbed it.  Until she begins absorbing the Bicarb, the line cannot be pulled.  So we are praying that her intestines will begin working with the Bicarb within the next few days.  It would be beautiful to get rid of the central line before moving to South Bend.
 
We are still very excited about what God is doing, and we look forward to observing His continued faithfulness throughout the challenges of the next few weeks.  Thank you for your precious friendship and prayers!!  May God bless each of you with His grace and peace.

Saturday, July 15, 2006
(Debbie) Well, we know why Karis hasn't felt so great the last few
days: she was hospitalized today with a line infection. We should know more specifics tomorrow.

Friday, July 14, 2006
(Debbie) There hasn't been news sooner because we don't yet know what's going on with Karis.  Her puffiness has come down a little but she's not feeling well and is super draggy.  Clinic was difficult for everyone yesterday (an exercise in futility, Karis says) because the computers were down due to a power outage, so lab test results, etc. were not available, and everyone over there is scrambling today to try to catch up.  Karis is scheduled to have her monthly lung (breathing) treatment Monday morning, and in the afternoon will have a venogram followed by a CT scan.  Perhaps we'll have more answers once those results are in.

Carissa seems to be doing better, thank God!  She's out of the ICU.

Tuesday, July 11, 2006
(Debbie) Karis has been released from the hospital and gratefully found her bed here at home. Other tests are being scheduled on an outpatient basis, and she'll see the docs again at clinic Thursday. She's not feeling well enough to go to class tonight, but is happy to be home!

Val and I peeked in at Carissa this morning, back in ICU. Please pray for answers.

Monday, July 10, 2006 (Six months since transplant!!)
(Debbie) Sooo . . . since she was feeling so swollen and puffy, Karis decided not to do her nighttime IV fluids for the last few days. She got away with it as far as hydration, but her electrolytes are a bit out of whack. She's spending the night at the hospital getting her numbers back in normal range. Valerie is there with her.

The experiment did have some positive results, though--they're going to try giving her oral supplements, and if that goes OK, will remove her central line, since she doesn't need it anymore for hydration and it could be a factor in her blood flow problem (if Dr. Sindhi is right about what's causing the swelling). Karis has been wanting that to happen before she goes back to college. What an amazing thing to not have to care for a catheter or worry about central line infections!!!! (They also may remove her G-tube, another line item on her wish list, though are still noncommital about that.)

Despite the results of Saturday night's ultrasound, Dr. Sindhi still thinks the problem is with Karis's veins and has ordered a dye study through her central line, which will give additional information. That will be done later this week. He spent a long time with us in clinic today, discussing college and what he still wants her to accomplish in the next month before her big move back to Notre Dame. He wants her to meet with Dr. Green, the head of infectious diseases, for better definition of what she should do to avoid infection (FREQUENT handwashing is the biggest thing, and staying away from people with symptoms of illness). Karis has been offered a place in one of the grad apartments on campus. That will make her move a lot simpler than if we had to find and set up housing for her off campus. She'll probably have three apartment-mates, but a room to herself, and easier access to everything on campus. We are grateful once again for ND's willingness to do all they can to help her!

Carissa has had another seizure. Please pray!

Sunday, July 9, 2006
(Debbie) We spent several hours in the ER again yesterday evening. Karis was feeling worse, with a lot of pressure up into her head, so they decided to call in the ultrasound person on call. To everyone's relief and surprise, she does not have venous obstruction, which had been everyone's best guess as to the cause of the swelling. Her chest x-ray raised suspicions that something may be going on with a lymphatic leak again--either that, or there's still some leftover fluid that hasn't yet resolved from her chylothorax several weeks ago. Don't know whether there's any connection with the swelling in her shoulders, neck, and face. Once they determined there was no immediate danger (ie., a clot in a vein), they let her come home. She woke up this morning as puffy as ever and didn't feel good enough to go to church. It's very weird. We'll see what they say at clinic tomorrow.

Since Karis commented that her head feels as large as a pumpkin, her friends are calling it "pumpkinitis." Not totally satisfied with this diagnosis, Karis would like to know YOUR opinion . . . Send your votes to kariskornfield@gmail.com !

Saturday, July 8, 2006
(Debbie) Karis spent several hours in the ER yesterday because of significant swelling of her shoulders, neck, and face, most prominently on the left side. After some debate about the possible causes, and good blood test results, it was decided that further testing could wait until Monday. She'll have bloodwork, then an ultrasound, then clinic on Mon. morning. Karis is not happy to be stuck with a "swollen head" for the events planned for this weekend, but was happy to get out of the ER because her former ND roommate Hannah had arrived for a visit. I hoped she would get better overnight, but this morning she looks as puffy as ever, especially on the left side.

Friday, July 7, 2006
(Debbie) We're safely back home in Pittsburgh, after a marvelous reunion at my sister Linda's farm in Iowa with 37 members of my family (my dad, all of my brothers and sisters, most of their spouses and children). Karis stayed well (except for a small problem with high blood pressure)--we're so grateful that she was able to participate in this memorable event! Thank you for your prayers! Valerie is here with us now.

Carissa continues in the hospital, spiking high fevers which no one understands.

Thursday, June 29, 2006
(Debbie)  We're off on our 17-hour drive to Iowa!!  Karis is doing great.  Please pray that she'll stay well the whole time we're gone.  Today and tomorrow family members are driving to Iowa from New Jersey, DC, Florida, California, Oregon, Oklahoma, Chicago, Mexico, Brazil . . .  I'm so happy that Karis can be a part of this gathering!

I just received the following note from Bev, who collected and sent cards and letters to Karis's donor family: "I sent 26 cards/letter - each one was very special and beautiful.  I know this will mean so much to the donor family."

Thank you so much to each of you who took the time and invested your love in doing this.

I don't know how many of you are tracking with Carissa.  The last couple of weeks have been really rough for her.  Details at http://www.monkeygirl.atfreeweb.com/Updates/current_update.htm

We won't be posting another update until we get back, unless there's some sort of emergency.

Tuesday, June 27, 2007
(Debbie) I actually did write an update, but it must have gotten lost in cyberspace between me and Ted! I'll try again, since what I wrote not only didn't reach Ted, but disappeared also from my computer. I've been having problems with my e-mail, not receiving what people send me and not sending successfully. Last night though I suddenly downloaded over 500 e-mails, written within the last month! I don't know where they have been! If you have written to me and not received a timely reply, please be patient while I work through all of this!

I just returned to Pittsburgh from Brazil. Don't know how to thank my sister Jan for the priceless gift of a month at home, being able to participate in Valerie's graduation and other special events, and see at least briefly so many other dearly-loved people. Karis has fared well--she looks fabulous. You'll see from the pictures that she's even riding her bike again! Just a few weeks ago, that was only a dream. She seems to be thriving on being home from the hospital. No sign of the cough that was so worrisome, and her ileoscopy this morning looked good (no evidence of rejection in her intestine). Her liver numbers are coming down more slowly than the doctors would prefer, but are out of the "danger" zone. The docs say they are going to keep her on steroids indefinitely to protect against another episode of liver rejection. This wasn't great news, but there doesn't seem to be any option at the moment.

We're extra delighted that she's doing so well because we plan to leave town Thursday morning to drive out to Iowa for a family reunion! We plan to be gone for a week. If Karis's labs look good tomorrow, she may not even need to have bloodwork done while we're gone! She's still on IV's at night, but otherwise is taking all of her medicines orally, and eats anything she wants, with great pleasure. She eats a LOT, with great frequency, but isn't gaining weight, so apparently her new intestine is still not absorbing as well as we hope it eventually will. Meanwhile she's in the enviable position of being able to eat as much of anything as she wishes, and it's such fun to watch her enjoy textures, flavors, colors . . .

I'm writing this while Karis is in the class she's taking at the local community college. She keeps very busy with friends, physical therapy, and a variety of fun activities (including the World Cup), sometimes needing to cancel plans for a rest break, but keeping up a "normal" day amazingly well. So much to be thankful for!!! With all hearts we thank you for your prayers and love for her, and thank God for his grace so evident in her life.

Thursday, June 15, 2006
(Janice) Karis was surprised Wed afternoon by the news that she could come home tomorrow (Fri 16), a week earlier than expected! She has responded well to an antibiotic and lowered steroids, although her cough persists, and she's met or exceeded the strength and skill goals she'd set, so they feel she's ready! Yeah, God!

It will take a couple days to get resettled and reoriented with medical procedures, although the small box of meds they are sending home with her is nothing compared with the boxes and bins and freezer chests of a year ago! She will report to Children's Hospital a couple times a week for labs, clinic, etc, return a couple times a week to Rehab for out-patient therapy, attend Spanish class Tues-Thurs evenings and services at Ascension and Three Nails, see friends... she'll stay busy! But Lord willing, she can enjoy meals she cooks, have less interruption in pursuing her own studies, and continue to prepare for the coming transition back to school.

Don't stop praying for rest at night (one recent night's sleep was lost, for instance, just with an IV pump that wouldn't stop beeping!), for daily plans and use of time as she works towards her goals and also seeks good closure with many friends here.

Saturday, June 10, 2006
(Debbie) I just talked with Karis and with Jan, so I'll send you a quick report before getting dressed for Valerie's graduation!

Overall it sounds like Karis is doing well. She has had a bad cold for many days that doesn't seem to be getting any better. The cough combines with the steroids to keep her from sleeping well. At clinic Thursday they took a chest x-ray to make sure her lungs are still OK, which they are. Her liver numbers continue to improve, but they're going to leave her at the current level of steroids (15 mg of Prednisone) for two more weeks. The best news is that the pain is gone!

Meanwhile, Karis continues to make wonderful progress in therapy. Each Friday she does a 6-min. walk to see how far she can go. Yesterday her distance improved 26% from the week before! Her right foot is more mobile, and feels more "normal" to her. The rehab hospital bought her new shoes to fit her new brace, which she really likes.

This week both physical and occupational therapists took Karis home to evaluate how she did on the stairs and make sure the house is considered safe for her. They're still a little concerned but have set a date for Karis to go home, assuming she's well medically: June 23rd. That's the day I leave São Paulo, to arrive back in Pittsburgh the next day, and will give her almost two months before she starts classes at ND. God is good--all the time!

Friday, June 9, 2006
(Janice) Karis had a great clinic visit Thursday and they don't want to see her for another two weeks, which frees her to attend a Pirates game next Thurs with the rest of her rehab unit. :) They are continuing IV fluids at night and will hold the steroids at 15 for another week or so, which may continue to affect her rest. Her liver numbers are down and the back pain is gone, so the CT scan was cancelled! She's had a cold so they took a chest x-ray; no one wants a return of pneumonia or CMV. Thankfully, it was clear. Karis is happy to eat a wide variety of foods and needs to eat frequently; even so, her weight is only holding steady. We were relieved :) that she passed her IQ test! Actually, she scored very high in everything except a couple areas of processing speed. They didn't even give her the puzzle test, since the staff watch Karis, Debbie and friends assemble one puzzle after another in her room!

Karis continues with aggressive therapy and we get out for something at least once a day--a mile walk, dinner or watching a World Cup soccer game with friends, a Bible study, Spanish classes at the community college... This week she attended the Arts Festival downtown with her therapists and another day we were successful finding a cute pair of shoes that will accommodate her brace. Perhaps the most exciting moment was watching her put both heels on the floor and visibly raise the front of her right foot! She says the constant tingling pain there is changing to a more normal pain as sloooowly more control and sensation are returning. Exercise and electrical stimulation (e-stim) are bringing results, with God's help!

The current projection is clinic on June 22nd, move home from rehab the 23rd, Debbie returns the 24th, I leave the 25th to pick up another sister's family and head out early to Iowa to help set up for our family reunion, Debbie and Karis and other cousins drive out together June 29-30, returning to Pittsburgh for class the night of July 6th. Lord willing, Karis will move back to Notre Dame mid-August!

With all the good news, continue to pray for: sleep at night, healing from her cold and resistance to infection/contamination as she gets out more and more, continued restoration of her right foot, God's going before her in the big transition back to college life! It's both daunting and exciting! Thanks for standing alongside her with your interest and prayers. As Karis would say, "God bless!"

Sunday, June 4, 2006
(Debbie) Jan tells us that Karis has been busy with therapy, people, and events. The rehab hospital is saying another 1-2 weeks before she will go home (to the Browns' house). The high-dose steroids make it difficult for her to sleep, so the main prayer request is that she be able to rest. We hope that her liver numbers will be low enough by the time she has clinic on Thursday that they'll be able to start cutting down the dose of steroids.

Thursday June 1, 2006
(Janice) Just over a year ago I was with Karis, and what a change there's been! I know she grew a lot worse prior to receiving the second transplant and then faced the initial recuperation, which makes it all the more remarkable how God has intervened and how hard she's worked!
--Her hair is growing back, perhaps a shade darker and redder than before.
--She moves beautifully, whether walking or climbing, even though it takes effort.
--She can throw and catch more consistently than I can!
--She's thinking and conversing clearly, reading, studying, even attending a 3-hour class on Tues/Thur nites.
--She relearning "hunger" as she spent two years being hungry and she's now inherited someone else's digestive system and metabolism!
--She is thinking concretely about what it will mean to return to life at Notre Dame in August, Lord willing.

Right now Karis is receiving a pretty high dose of steroids to counteract potential liver rejection. The steroids keep her from sleeping well and since her days can be pretty full, you might pray she can get good rest. The liver numbers were down somewhat at clinic on Wed, so that was good news! She'll do extensive labwork on Monday and by Thursday's clinic, we should have a better idea if the steroids have done their job and can be reduced. Her IV fluids were increased from six to eight hours and a new med added (Valganciclovir) to fight any recurrence of the CMV infection. Karis has a sometimes-ongoing and sometimes-sharp pain in her back; a CT scan will help evaluate whether the source of pain is primarily muscular, the liver, or something else.

Karis sends her love and may send the next update herself.

Sunday, May 28, 2006, 4 p.m.
(Debbie) I'm writing to you from my home (!) in São Paulo, Brazil. It's lovely to be here with Rachel and Valerie. David will arrive back from a conference tomorrow night.

Karis just called me. She had just been informed that the liver biopsy that was done on Friday showed "activity." Karis wasn't sure exactly what that means but they are treating it as rejection, and she will receive her first mega-dose of steroids (one gram of Solu-Medrol) this afternoon. She has felt progressively worse over the last few days, with increased pain and fatigue, so we hope this treatment will soon be effective. So far Karis has resisted going back on narcotics for pain relief, using instead large doses of Tylenol. But she hasn't felt well enough to do her therapies in more than a very limited fashion.

The amazing thing is that they're letting Karis stay at the rehab hospital, rather than pulling her back in to Children's Hospital! That's wonderful.

Thursday, May 25, 2005
(Debbie) Karis has not been feeling well, and her liver numbers are still high. An ultrasound of the liver done on Tuesday was normal, so at clinic today they told us they suspect rejection of the liver. She will have a liver biopsy tomorrow. We won't know the results until Saturday afternoon, but if it is rejection she will have to go back on steroids. They tell us that liver rejection is the easiest one to treat, and her other episodes of liver rejection were short-lived, so we hope this one will be the same (if it is rejection).

Our little friend Ricardo has PTLD (Post Transplant Lymphoproliferative Disorder), a sort of cancer that transplanted people are vulnerable to. He'll be on chemotherapy for a month. He's out of ICU and back on 7 North, a big relief to his mom.

Tomorrow I'll be flying to Brazil to spend four weeks at home, celebrating Valerie's graduation from high school and a few other things. My sister Jan will be coming to stay with Karis, so she'll be in good hands. Carissa has gone home to Harrisburg for the weekend! And Artur may get out of the hospital. Thank you for praying for our friends as you pray for Karis.

Saturday, May 20, 2006
(Debbie) A question I am asked frequently: What is Karis accomplishing in her therapy at the rehab hospital? Here are examples of things she can do now that she could not do when she went there three weeks ago:
--snap the snaps on her PJs
--open a jar (that has already been opened)
--open a little packet of mustard or ketchup
--take sheets and blankets off a bed and re-make it (slow, but she did it!)
--carry a tray with a meal on it
--carry a load of laundry all the way down a long hall to her room (didn't drop it until she got to her room)
--open the heavy doors going into her room
--bake cookies, following directions herself
--copy a whole page from a book (handwriting shaky, but legible)
--keep on writing for half an hour (not quite so legible toward the end)
--read and orally critique a several-page article
--compose and write a letter
--reach the half-way point of a challenging book she is reading
--successfully learn and use some mnemonic (memory) devices
--increase her lung capacity, speak a little bit louder (though still too soft to be really functional--people still have to ask her frequently to repeat what she said)
--carry on an extended conversation without getting too tired or losing focus
--take a shower, wash and dry her hair, and dress by herself (still needs help getting her shoe on over the brace)
--increase the range of motion of her right foot
--sit in a regular (hard) chair without getting uncomfortable
--play a board game without getting too tired part way through
--put together a 500-piece puzzle
--get through a day with only one nap (on a good day)

With her new brace on, which has been made comfortable for her foot, she can now:
--walk 1000 feet two minutes faster! (9 minutes down to 7)
--walk a whole mile in 45 minutes, without stopping to rest (on a good day)
--walk up a set of stairs without holding the handrail (can't do it yet going down)
--walk down a set of stairs alternating feet (using the handrail)
--reach down and pick something up off the floor without losing her balance
--walk up a slope without holding on to anything (down is harder) Here's a really big one: she can now sit down on the floor and get back up again on her own, without pulling up on anything. She doesn't need to be so afraid of falling when she's by herself.

We are quite sure she would not have accomplished all this in such a short time without the intensive therapy and discipline of the rehab hospital. She is very grateful to be there, especially with the goal of going back to college in August. She has started a class at CCAC (local community college) Tues. and Thurs. evenings which will be about the right level of challenge, I think: getting her used to being back in a classroom, needing to focus, take notes, interact, do homework, have deadlines, be a "normal" person out in the world!

Karis eats whatever she wants now, and has been successfully gaining weight. I no longer have the feeling when around her that just about anything could knock her over.

Some of her dreams: someday be able to run, ride a bike, drive a car, play soccer, walk as fast as other people normally walk, pick up and hold a child, walk confidently without her brace.

I told someone yesterday that what Karis still needs to conquer by August seems a little intimidating, but when we look back at where she has come from, her recuperation over the last four months is nothing less than spectacular. Thanks be to God!

Thursday, May 18, 2006, 4:00 p.m.
(Debbie) Karis had clinic this afternoon. Everything is fine except that her liver numbers are still elevated. An ultrasound will be scheduled for next week, and if they haven't come down by a week from now, Dr. Sindhi wants another liver biopsy. He cut her IV fluids from eight hours to just six hours at night. We're on the way toward getting rid of IV's! If Karis is doing well a month from now, he sees no problem in letting her go to a family reunion in Iowa over the 4th of July weekend. Something exciting to look forward to!

Sunday, May 14, 2006
(Debbie) Warm wishes for celebrating your mother on this special day! I'm thinking today especially of friends whose mothers are in heaven, and of the children and husband and parents and siblings of Karis' donor. Bev tells me that she has received 13 cards for her family, and that each one has been precious. If you would still like to send something to encourage them, Bev will collect what comes in until May 30th, and then send them to the family. Address, etc. is included with the update dated April 28th. Thanks so much to those who have taken the time and care to do this--it means a lot to us.

Karis is fine, although her new brace is hurting her foot. She'll see tomorrow about getting it adjusted. We're trying to find the balance between rest and activity. Karis was very tired yesterday and again this afternoon, after attending church this morning. But otherwise she's doing well. Tuesday she plans to begin an evening class at our local community college.

After I told you that little Ricardo was better, he suddenly took a turn for the worse, and ended up Friday night in ICU with pneumonia. Infections hit immunosuppressed people fast and hard. Yesterday was Ricardo's two-year anniversary since his transplant, and we first met him shortly after his surgery. Little Artur will have a liver biopsy tomorrow to check out possible rejection. His transplant was at least six months ago, tho I don't remember the date exactly. Both situations illustrate the ongoing need for vigilance against infection and rejection, even after recuperation from transplant surgery.

Friday, May 12, 2006
(Debbie) Took all day to accomplish, but Karis is out of the "regular" hospital and back at the rehab hospital. She wasn't feeling well most of the day, probably because her FK level went too high. That was probably because she didn't eat yesterday due to the ERCP, and therefore absorbed more of the medication than she does when she's eating. Anyway, all's well that ends well. Dr. Sindhi has moved her to every-other-week scopes and biopsies, and just once a week clinic, though she'll still have blood tests twice a week. She's still on 8 hours of IV fluids and electrolytes at night, but otherwise her care is becoming quite easy.

I think I forgot to mention that Karis's chest tube was pulled Wed. afternoon! She had to wait 48 hours, but finally got to take a shower this afternoon, a great delight. She was feeling well enough this evening to go out with friends, and is looking forward to re-engaging again with her therapy. A new brace was waiting for her when she got back to her room at the rehab hospital. It is designed to help her make more use of what she has gained in the function of her foot. (Vera and Rachel will be happy to know that the brace has been reshaped so that it fits in the shoes she owns.)

Little Ricardo seems to be over whatever was ailing him--no one seems to know quite what it was. Our little friend Artur, however, is back in the hospital fighting rotavirus, a more serious and miserable problem for transplant patients than for kids who are not immunosuppressed. Between our three families, there was quite a lot of Portuguese being spoken on 7 North this week!

Thurs., May 11, 2006, 1:00 p.m.
(Debbie) Karis is back in her room on 7 North following her ERCP (exam of her bile duct). The stent was obstructed, so they removed it, and we hope that was the cause of both the elevation in her liver numbers and the pain she's been feeling. Dr. Sindhi says that if her labs are good in the morning, she can return to the rehab hospital. Hurrah!

Monday, May 8, 2006, 7:30 p.m.
(Debbie) I hope you've been thinking no news is good news! I traveled over the weekend and have been learning today about all the fun Karis had with her brother and Pittsburgh friends while I was gone, including a new haircut! For the first time since transplant she was able to attend Sunday morning worship! Karis's sister Rachel and her friend Vera returned with me to visit for a couple of days.

It's been lovely for Karis to have the relative freedom of the rehab hospital, while working hard and seeing progress in her therapies. On a day when she doesn't have to detour to Children's Hospital for tests or biopsies or clinic, she has three and a half hours of therapy (two PT, one OT, one half speech) a day, plus an hour and a half of homework. That's enough to make her pretty tired by the end of the day!

The rehab staff members who have been working with Karis met on Friday to evaluate her progress toward a list of goals, and to define a plan for her time here. They think it will take 4-5 weeks to meet the goals that have been set for inpatient rehab. Once she goes home, she'll only have three therapy sessions a week, compared with several per day here, and she knows it will be very hard to maintain the discipline to keep progressing at the rate she is here, so she'd like to stay for as long as the staff and insurance agree that it's best for her. The big goal is to be ready to handle going back to Notre Dame in August.

Karis is seeing steady progress in various dimensions of her life, and that is very encouraging. She's reading, writing, and thinking more easily and clearly. Her physical endurance has increased. Last week, for the first time since her first transplant, she was able to move her right foot UP a little bit--a necessary skill for normal walking and climbing stairs. For a while she's been able to push down, but hasn't been able to pull her foot back up. A new brace is being constructed for her that will keep developing this emerging skill. For the first time Karis has the hope of someday walking without a brace.

Today the morning was spent on blood work, chest x-ray, and clinic (lots of waiting time between each). We were surprised by being told that Karis needs to be re-admitted to the hospital! At first we thought the doctor was making some kind of a joke, but he was perfectly serious. Karis's liver numbers have trended up the last few times, but today's tests showed a significant leap upward, double what they were last week. Dr. Soltys said this is consistent with significant pain she has been feeling. He said the high numbers could indicate that the bile duct is once again not draining properly, or it could be an early sign of another episode of liver rejection, or it could be something else. He says she has to be hospitalized to do the proper tests. We persuaded him to wait until Wednesday so that she can enjoy Vera and Rachel's visit, but he wouldn't budge past that. So Karis is scheduled to be re-hospitalized on Wednesday morning and to have another ERCP on Thursday. We hope they will find and fix the problem quickly, and that she will not get pancreatitis from the ERCP! We don't know yet whether she will be required to move out of her room here at the Children's Institute. We have been promised that on 7 North she will NOT go back to room 28!

Great news: Carissa has been released from the hospital!!!! Not so
great: Eudiscélia called today to tell us that our little friend Ricardo is being life-flighted back from Connecticut, with some kind of mysterious infection that doctors at Yale Hospital haven't been able to conquer. We appreciate your prayers!

Thank you to all who have sent cards or letters to Karis's donor family!

Saturday, May 6, 2006
 (Valerie)  Happy late birthday to Karis!! Dan arrived in Pittsburgh yesterday to celebrate her birthday with her.  The doctors had a meeting and decided she should be able to finish up rehab in four weeks.  She has been walking on the tread mill and getting stronger each day.

The main concern right now is a strong pain in her lungs which has been bothering her during the last three days.  The doctors could not find an explanation for it through the x-rays, so we are not yet sure where the pain is coming from.

My mother (Debbie) is in Wheaton for a class reunion and is helping Rachel move out of her room.  Karis' room phone has not been working yesterday or today, but it should be fixed soon.

We continue looking forward to her continued progress and recuperation, in preparation for the move to South Bend in August.

Monday, May 1, 2006, 11 p.m.
(Debbie) We spent a good part of the morning at the hospital today doing blood work, chest x-ray, and clinic, and came through all of them with flying colors. (A nurse at clinic gave Karis the gift of a Notre Dame t-shirt!) There is no more accumulation of fluids around Karis's lung, so today she was liberated to eat anything she wants. If the x-ray next Monday is still good, her chest tube will be pulled, and then she'll be able to shower again! After therapy this afternoon, we enjoyed walking/wheelchair riding through the gorgeous neighborhood around the rehab hospital, relishing the exuberance of springtime. Tomorrow we head back to the hospital for scope and biopsies, and then don't need to return to clinic until next Monday. Karis will be able to focus on rehab, preparing to come home.

Friday, April 28, 2006, 5:00 p.m.
A message from Karis:
Since you might know that my birthday is next week, I would like to make a request. Please do not send me cards. Instead, if you would like, please send a card or note to the family of my donor.

I've been thinking about this because if it weren't for my donor's decision to give her organs, I might not be celebrating this birthday. While I am celebrating life, I'm sure that my donor's family is still grieving. I would love to do something to encourage them, if we can.

I asked permission to do this, and was given guidelines to follow in sending a card or note to the family of my donor. A nurse from the hospital has offered to receive all of the cards and at the end of May, turn them over to CORE, who will then send them to my donor's family.

Guidelines from CORE:
1. No personal or specific information that could identify the recipient or lead them to find the recipient; i.e., write "I attend college with Karis," NOT "Karis and I attend Notre Dame"
2. Do not use city names, hospital names, phone numbers, or names of physicians
3. Use first names only
4. Refer to the donor as "your loved one"
5. Sign the card or letter with your first name and relationship to Karis; i.e. Bob and Carol, Karis's aunt and uncle; Matthew, a friend of Karis

All cards will be reviewed by CORE (Center for Organ Recovery and
Education) to ensure confidentiality and black out any personal information.

Send all cards or letters to Beverly Park by MAY 30th:
Beverly Park MSN, CRNP
Dept. of Transplant Surgery, 7 North
Children's Hospital of Pittsburgh
3705 5th Ave.
Pittsburgh, PA 15213-2583

THANK YOU SO MUCH!!!

I feel like my celebration has already started, just walking out of the hospital after being there 16 weeks! I'm free!!!! I have a window and a big room and privacy! Today I started physical therapy and occupational therapy and wore myself out. But it's so good to be working toward goals. Thank you all so much for your love and support through all of these days and weeks!

Fri., April 28, 2006, 8 a.m.
(Debbie) A little more detail about how Karis is doing:
1. Eating is going well, with a little bit of help from medications. No TPN, no tube feeds!! All of the new organs are functioning well!!!!
2. Lung x-ray yesterday was the best in recent history!
3. No more insulin! for the last two days--still checking her blood sugar with some frequency, but so far so good!!!).
4. Blood pressures have been good enough to be able to skip doses of blood pressure medication from time to time.
5. Still on 8 hours of IV fluids at night, with some electrolytes included.
6. Still on IV Zosyn (because of the abscess), until May 3rd 7. Still positive for VRE, which means Karis continues in isolation. That means, if you come to visit, you should gown and glove if you want to touch her, and you MUST wash your hands upon entering her room and upon leaving, even if you don't actually touch her. We can't take a chance of spreading this inadvertently to other kids.
8. Wound healing continues well. Perhaps another few weeks.
9. Karis left the hospital on only 10 oral medications!!! (most of them, of course, are given two or three times a day). Our discharge nurse said this is one of the simplest post-transplant regimens she can remember!

We left the hospital feeling tremendous gratitude for all of the wonderful people who have cared for and invested in Karis' life over all of these weeks. And in awe of the miracle of new life and health. If the doctors were right about how sick Karis was before transplant, she probably wouldn't be alive today.

The Children's Institute has been completely remodelled since Karis was there (briefly!) a year ago. The rooms are large and lovely with big windows and lovely views. Karis has twice the space she had at the hospital, and can see green grass and trees instead of roofs and walls. I expect she will make progress quickly in this lovely new environment.

Early Monday morning Karis will go back to Children's Hospital for blood work and repeat x-ray before a clinic visit with the transplant team. Tuesday she goes back for scope and biopsies. Other than those interruptions, however, she'll be able to focus on rehab, getting ready to come home (to the Browns' house). Our hope and goal is to move to South Bend mid-August.

Thurs., April 27, 2006, 6:30 p.m.
(Debbie) Karis is out of Children's Hospital!!!!! She moved over to the Children's Institute (rehab hospital) this afternoon, looking and feeling great!!! We're so excited and grateful!

The phone number in her room is 412-420-1507. She can receive calls until 10:30 p.m. Visiting hours are 4:30-9:00 p.m. on weekdays and 9:00 a.m.-9:00 p.m. on Saturdays and Sundays.

Karis's chest tube is capped off. Present goal is to remove it week after next, if there's no sign of more fluid around her lung.

Wed., April 26, 2006, 8 a.m.
(Debbie) Happy Birthday to Battle!

The plan I described was moved up a day, apparently because the rehab hospital wants Karis to be showing that she can eat again for a bit more time than had been allowed for. So the chest tube was clamped on Mon. afternoon, and Karis started eating yesterday afternoon. That was fun, but it went right through her--literally, within a few minutes. I don't think there was time for her to absorb anything from what she ate. They're trying this "cold turkey"--going from TPN to 100% oral just like that, not even using tube feeds. Makes me nervous. I hope she's ready for this!! Still aiming for transfer to the rehab hospital tomorrow (Thurs.).

We talked briefly to David on the phone last night. The strike was called off, and things are going well in Santa Cruz! Praise God!

Monday, April 24, 2006, 1 p.m.
(Debbie)  The transplant team just came by on rounds.  Once more we have a plan for transfer to the rehab hospital.  If the chest tube continues draining only minimally by tomorrow, they'll clamp it for 24 hours.  If that goes OK, without accumulation of fluid around the lung, they'll start her back on tube feeds on Wednesday.  If that goes OK, they'll let her go to the rehab hospital on Thursday.  Wouldn't it be lovely if this plan actually works?!  Tomorrow will be 15 weeks since transplant.

Meanwhile we continue treating the small abscess on the left side.  Everything else is going well, which is saying a lot!!  The ileoscopy this morning looked good; we'll know the results of the biopsies tomorrow. 

I've received a question about biopsies that might be good to respond to here:  "I've been wondering about the biopsies.  Are these all small surgeries on each of the new organs?  How does her body handle all that?"

Of the five organs Karis had transplanted, the one most likely to suffer rejection is the small intestine.  The general assumption is that if the small bowel is fine, everything else is too.  The small bowel is easily accessed through the stoma (end of the intestine that comes out on the abdomen).  They insert a scope, take a good look up a couple of feet, take pictures, and take biopsies here and there.  These "ileoscopies" are done twice a week for the first few weeks after transplant, but since Karis hasn't had rejection for a long time, she has now progressed to having them done once a week.  Eventually the frequency will be cut back to every two weeks, and then once a month.  Although rejection can occur at any time for the rest of Karis' life, the risk lessens with more time out from transplant and as the correct immunosuppression level is determined and stabilized.

The liver is monitored with liver function tests (blood tests).  If the LFTs are elevated, there is suspicion of liver rejection, and a liver biopsy may be ordered.  This is a bit more complicated, sometimes using sedation.  The liver is visualized using ultrasound, and a hollow needle is inserted on the right side just under the ribs, using a local anesthetic.  Afterwards, the patient has to lie on the right side for several hours to help prevent bleeding.  Karis has only had liver biopsies twice.

I'd like to request your prayers for David and for the MAPI team in Bolivia.  For months they've been planning a MAPI conference for next weekend, and David flies there from São Paulo this afternoon.  But a general strike has been called in Santa Cruz, the city he'll be visiting, which will particularly complicate transportation of participants to the conference.

Saturday, April 22, 2006, Noon
(Debbie) Karis had a terrific day yesterday! After draining quite a bit during the morning, the chest tube drainage tapered off to practically nothing during the night and this morning. Hurrah!! This "no eating" thing finally seems to be working! Karis had NO TUMMY PAIN yesterday, for the first time since we can remember (we're talking not weeks or months, but years . . .). We suspect it's a combination of treating the abscess in her left lower abdomen, and not eating. Karis' vital signs and all of her labs were normal. She hasn't had to use oxygen since Thursday. We went for a walk in the afternoon and got caught in the rain the last couple of blocks back to the hospital--another fun little adventure!

Thurs., April 20, 2006, 6 p.m.
(Debbie) After an eventful night, with CT scan at midnight and heart rate in the low 40's, and sleeping all morning, Karis is much better this afternoon, with her heart rate gradually returning to normal range, and with it, a return of some energy. She went for a wheelchair walk with Cole to see an art exhibit and was able to be much more awake during other parts of the afternoon. She's been able to breathe without oxygen for the last couple of hours, which is very freeing. We expect OCI friends from Colorado Springs to arrive for a quick visit in just a few minutes. Karis is working on Arabic while she waits for them.

The CT scan did show a collection of fluid on the left side, and the drainage grew out gram negative bacteria, so Karis will be on IV antibiotics again for awhile. No explanation yet for the bradycardia. The chest tube has drained 700 ml in the last 24 hours.

Wed., April 19, 2006, 7 p.m.
(Debbie) Happy Birthday to Rachel!!

Karis went out for a walk with Megan this afternoon, enjoying the gorgeous spring weather. That's the good news! Before and after Megan's visit, all Karis has wanted to do is sleep.

During the last couple of days we've had a series of small (mis)adventures. In the transition to not eating, before the TPN was started, Karis' blood sugar went low and we had trouble waking her up. Took several hours to get that stabilized with sugar running into her veins. The last couple of days she's been having bradycardia (slow heartrate, in the 40s and 50s, but normal sinus rhythm & good blood pressures) and wanting to sleep all the time, as if she's sedated, but without any clear explanation. Her chest tube continues to drain quite a bit, although less than before she started the no-eating experiment, and now it's yellowish instead of white. She still hasn't been able to wean off the oxygen.

This afternoon the incision wound that's still open on her left side started draining a fair amount, so we suspect that a tunnel off of that wound "broke through" into a small abscess (pocket of fluid that might be infected). That's the part of her abdomen that's been most painful, so maybe this is the explanation of that pain. They're doing cultures, have started her on two antibiotics, and plan to do a CT scan of her abdomen tonight or tomorrow to understand more clearly what's going on.

(By the way, a correction: I said that Karis was having an ultrasound on Easter morning. She actually had a CT scan, not ultrasound, which was later explained to us as a check for PTLD, a fairly serious condition that they suspected when her upper body, neck, and face swelled up so much. Thank God she does NOT have PTLD. We didn't even know enough to have been worried about that! Apparently the swelling was all from fluid overload, which was dealt with over the next couple of days. Her kidneys were a bit balky, so it took a little while.)

I've been thinking today of the image used by the writer of Hebrews of our hope being like an anchor, by which we are secured in God. The small of events of our day-to-day lives are almost without substance compared with the solidity of that reality.

Monday, April 17, 2006, Noon
(Debbie)  In a few minutes I'll take David to the airport for his return to Brazil.  He packed up everything he owns that was here in Pittsburgh because he doesn't expect to be back here again until perhaps December (Karis won't see him again until the end of June, at a family reunion in Iowa, and then David will be traveling around visiting churches and friends until our planned move to South Bend mid-August for Karis to start college again.)  Of course, God may have other plans . . . we basically live a day at a time, and find that's the way God gives us his grace:  "Grace for today and bright hope for tomorrow."

 
It's been a little hard for Karis and for us to once again give up the idea of moving over to the rehab hospital.  But after talking with the doctors this morning, we understand that they want to avoid surgery for the chylothorax and aren't sure that it would even solve the problem.  It seems there is no quick solution, so Karis is settling in today for an initial 7-10 day trial period of being back on TPN and not being able to eat, though she can still drink water.  She's been draining increasingly large amounts through her chest tube, so we're clearly not making progress with just the low fat diet.
 
Since Karis couldn't leave the hospital yesterday, friends and Easter dinner came to her!  The docs said she could splurge a little bit on what she ate yesterday since she won't be eating at all for the next while.  She was allowed a 20-minute wheelchair ride later in the day (not quite long enough to go visit Carissa).  For the most part, she's confined to her room because they have the chest tube connected to suction.  She had to go back on oxygen during the night Saturday and hasn't been able to come off it yet, and is now back on IVs as well, so mobility is a little more cumbersome than the freedom she enjoyed for awhile.

Saturday, April 15, 2006, midnight
(David) He is risen!  He is risen indeed!  Happy Easter! 
Karis has had some pain issues in these last few days, didn't feel good today, had a headache whenever she stood up and tonight is quite swollen, especially on the left hand side of her neck, but in general throughout her body.  She'll have an ultrasound tomorrow to see if that reveals anything.  All her numbers are normal (blood pressure, sugar, liver, no rejection, no infection, etc.).  She's hoping to have a pass to go to the Easter 10:30 a.m. service at Ascension and then home to our apartment for Deb's Easter dinner for our family and some friends.

Monday she'll start 7-10 days of NPO, only drinking water, going back on TPN with the hopes that this will stop the high level of draining fatty fluids, over half a liter a day, day after day.  She will hopefully move to the rehab hospital Monday.  If the thorasic duct that is leaking fatty fluids into her chest cavity instead of into the lymphatic area doesn't heal itself, then after the 7-10 days she'll come back to Children's Hospital for chest surgery to hopefully resolve the thorasic duct problem.

Prayer requests: that the swelling will go away, she will feel good enough to be able to enjoy the Easter service and dinner; that she would be able to go to the rehab hospital Monday and that the thoracic duct would heal so she wouldn't have to return to Children's for surgery.

Wednesday, April 12, 2006, 11 p.m.
(David) Karis is in good spirits, having walked six blocks to visit Carissa via a walk outdoors... adventuring out without the wheelchair!  Walked about four blocks on the way back before visiting with Megan, a friend from her church, Three Nails.  She also walked down to the cafeteria and back, a much shorter walk, but nonetheless venturing out again without the wheelchair.  Her chest tube continues to drain a fair bit, but we've gotten permission to go to the Rehab Hospital with a chest tube.  So if everything continues steady as it has been, she'll move over on Monday, the day I leave to go back to Brazil.  Pain in her lower intestine has been troubling her for about six weeks; we've begun a new low-level oral methadone treatment to see if that will help.  Her incision wounds are healing well and if they continue as they've been doing, may finish healing in another six weeks.  Her J tube slipped out last night and they decided to leave it out, doing her nightly tube feedings through the G tube.  Yea!  One less tube!!!
Deb is having a great visit with her Mom and Dad in Tahlequah, OK and will return Friday.
Principal prayer request: that all would continue well and that she could go to the Rehab Hospital Monday; better yet if she could go without the chest drainage tube!

Sunday, April 9, 2006, 10 a.m.
(David)  Unfortunately, Karis had breathing difficulties last night, is back on oxygen and will have to go back to draining fluid buildup around her lungs.  She may need to go NPO and back to TPN as the next step in trying to lick this problem of fatty liquids building up inside of her.

Saturday, April 8, 2006, 4 p.m.
(David) Spring has sprung!  Thursday night Karis left the hospital on a pass to attend a capoeira show (a blend of Brazilian dance and martial arts) with 3 friends.  She had a marvelous time (aside from the inconvience of having to use a mask in the theater) and afterwards, back in her room, she stayed up late watching a movie.  Friday afternoon she and I took a walk both within and outside the hospital on the sidewalk, until she tired and got back in the wheelchair.  Friday at midnight she got hungry (yea!) so she walked, pushing her pole with IV meds) and Deb pushing the wheelchair to the adult hospital that still served sandwiches at that hour.  She never used the wheelchair, so Deb used it to transport the sandwich back to her room!  Saturday, as I write, she's out on another pass with her good friends, Jim and Barb Blechl who've driven seven hours from South Bend this morning and will drive back tomorrow afternoon.  (Jim is her doctor when she's at Notre Dame and Barb is a nurse who stayed with Karis last year, letting Deb visit Brasil; we stay in their home when we're in South Bend).  Any day now, Karis is going to walk out of the hospital and not go back!  :)  

Today, for a change, all of the news is good news!  Just saying that makes me cry.  But, as you probably know, I cry easily.  So don't worry.  :)  The biopsy showed that Karis doesn't have any liver rejection, saving us from the steroid treatment with its many side-effects.  Ohhh, glory!  Her lung X-ray shows that she doesn't have fluid pressuring her lungs.  (She needs to stay free of that liquid so her left lung will re-attach to where it belongs, having separated due to the fluid pressure).  She continued to drain over half a liter through Thursday and Friday morning, but then stopped and they capped off the drainage tube.  If she continues well for a few more days, hopefully they'll pull the tube, freeing her from the pain it causes.  As our friend, Cole, said yesterday, Karis is the only person he knows that can give you a big smile and in the next breath ask the nurse if she can have more pain medicine.  The challenges ahead are still big.  When she leaves the hospital, she'll go to a rehab hospital for about a month. 

She has completed her application for readmission to Notre Dame.  And I've completed the much thicker paperwork for scholarship assistance!  She dreams of doing two courses in intermediate Spanish in a community college here in Pittsburgh from mid-May to early August.  And we all dream of her having the strength and health to go back to Notre Dame for the Fall semester (along with Valerie!) at the end of August. 

In addition to Karis doing well, Deb and I are doing well also (thanks for asking!  :)  ).  In spite of so much time apart over these years, we are finding that we're still friends and really grateful to be together.  We're trying to squeeze a couple hours out of each day just for ourselves.  She travels Tuesday to Talahassee, OK, for three days to visit her parents.  Pray that in spite of her Mom being in assisted living with Alzheimers and Dad having radioactive treatments for prostate cancer, the time would be wonderfully freeing and happy, being gone from the hospital environment of Children's in Pittsburgh.  

Thurs. April 6, 2006
(Debbie) Karis's liver function tests, which were gradually coming down toward normal, have stopped coming down. Dr. Sindhi wants to repeat a liver biopsy tomorrow. The concern is that by lowering Karis' immunosuppression in order to deal with the CMV, she may have gone back into rejection. This is a tricky balancing act!

Wed., April 5, 2006
(Debbie) Karis and I are delighting in the return of David to our world for two weeks. He's had an intense ministry schedule over the last month, so we hope he'll be able to get some R&R for himself while he's here.

Yesterday the transplant team asked the thoracic specialists for their advice on how to deal with Karis' chylothorax. They think that if Karis stays on a low-fat diet for 6-8 more weeks, that whatever caused the leak from the lymphatic system will heal. Her chest tube drained a fair bit overnight, so that should help. The next time it stops draining, if her x-ray looks good, they'll probably pull it.

Karis' CMV count has come down from 1.3 million to 20,000, so she's come a long way. That was very encouraging news this morning.

Sunday, April 2, 2006
(Debbie) Congratulations to Valerie (Karis' sister) for being accepted at 5 out 5 colleges that she applied to!

When I told Karis I had asked for special prayer, she said "Oh, thank you!!" Thank you very much to all who prayed yesterday. I am encouraged and I believe Karis is as well. I have received e-mails from other transplant families expressing their appreciation for those who prayed for their children.

Clarifications:
ERCP stands for Endoscopic Retrograde Cholangiopancreatography. (Didn't that make your day?!) EBV is Epstein Barr Virus, the same virus responsible for mono. Not something we would prefer for Karis to deal with right now.

Karis is doing OK, just low on energy and still having difficulty moving around because of the pain of the chest tube. The chest tube isn't draining much anymore, so we hope it's soon to come out. Karis is no longer requiring oxygen. She wasn't up to doing PT yesterday, but did
walk around 7 North a little bit and rode in the wheelchair over to Montefiore yesterday evening for a brief visit to Carissa, who looks terrific with her NG tube out. Karis can't go out on pass as long as the chest tube is in (nor has she felt up to doing so).

Dr. Soltys just came by and said Karis' chest x-ray looks good, so tomorrow he's going to cap off the pigtail and see what happens. He says he's not brave enough to pull it out yet.

We sang a beautiful song in church this morning that encouraged me. With all of our little ups and downs, Jesus doesn't change. Perhaps the song will encourage you too, with the challenges you face today.

You are Holy, by Marc Imboden and Tammi Rhoton, 1994

(Men sing, women echo)
You are holy (You are holy)
You are mighty (You are mighty)
You are worthy (You are worthy)
Worthy of praise (Worthy of praise).
I will follow (I will follow)
I will listen (I will listen)
I will love you (I will love you)
All of my days (All of my days).

(Men and women sing at the same time but separate parts)
(Men) I will sing to and worship the King who is worthy.
I will love and adore him and bow down before him. (repeat) You're my Prince of Peace and I will live my life for you.

(Women) You are Lord of lords, you are King of kings You are mighty God, Lord of everything.
You're Emmanuel, you're the great I AM
You're the Prince of Peace who is the Lamb You're the Living God, you're my saving grace You will reign forever, you are Ancient of Days You are Alpha, Omega, beginning and end You're my Savior, Messiah, redeemer and friend You're my Prince of Peace and I will live my life for you.

Friday, March 31, 2006, 6 p.m.
(Debbie) The doctors at Presby who did the ERCP were very pleased with their work. The bile duct had a stricture at the bottom that was not allowing bile to drain properly. They clipped the muscle to open up the duct, drained out the bile, and put in a stent (a plastic ring) that will hold the duct open while it heals. A month from now they will go back in and remove the stent. A bonus of the procedure was the confirmation that the rejection has been dealt with. Karis enjoyed being pain-free for several hours because of all the medicine they gave her!

We were just informed that Karis's CMV count is the highest the transplant team has ever seen, and her EBV is elevated as well. They're more concerned about that right now than about rejection, so they're stopping one of the immunosuppressants (the Celcept). The CMV may actually have caused the chylothorax by breaking down lymph channels.

We are fearfully and wonderfully made!

Friday, March 31, 2006, 8 a.m.
(Debbie) As we complete one month and begin a new one, I'd like to request a 24-hr. period of prayer and fasting (whatever that means to you), from 6 p.m. tonight to 6 p.m. tomorrow night, asking God to break through this cycle of one thing after another happening to set back Karis' recovery. If you'd like to come by the hospital to pray directly with her, or to use the hospital chapel on the second floor across from the gift shop, you're more than welcome.

I haven't talked with Karis about this yet, but I'm sure that she would want you to include in your prayers Alli's family, our donor's family, and the other transplant patients. I'm afraid that if I name them I will forget someone, but here's a partial list, from my prayer
journal: Carissa, Ian, Alyssa, Mik, George, Justin, Artur, Ricardo, Destiny, Makenzie, Isabelle, Amy Z, Amy M, Derek, Sara, Corinne, Kenny, Luke, Ashley, Nicholas, Hannah, Emily, Gary. (If you're reading this and you or your child's name should be on this list, PLEASE forgive me--and please tell me.) Also please pray for James, a little boy from our church who is in Children's right now.

THANK YOU!

Thursday, March 30, 2006
11 p.m.
(Debbie) Crazy day. After being NPO all day (nothing to eat or drink except pills), Karis finally had her chest tube (affectionately called a "pigtail") inserted about 5:45 p.m. It immediately drained out 700 ml of milky white fluid, so it's another chylothorax (or, as we're calling it in honor of Dr. Soltys, a Kylethorax). By the time I left the hospital at about 10:30 it had drained another 500 ml. She's already breathing better, but still having a hard time moving around from the pain of the pigtail.

We did, however, after watching The Ten Commandments on DVD since Karis wasn't up for much this afternoon, enjoy a half hour walk outside in the gorgeous spring sunshine, with Karis plus oxygen in a wheelchair, before insertion of the chest tube! Our first really warm spring day. Crocuses are blooming and several trees beginning to blossom. Pitt students were out in strength, playing frisbee, tossing balls, sunbathing . . .

Two more new things happening: this evening Karis was put on Ganciclovir because her CMV count is up (a virus she has carried in her blood since her first transplant). She doesn't have symptoms of infection but they're treating her before she does. (Remember that I mentioned high levels of immunosuppression leave a person susceptible to infections?) CMV
(cytomegalovirus) is the bug that was responsible for Karis' second pneumonia last December (2004), so we have a high level of respect for the damage it can cause.

Secondly, now that the liver rejection is under control, the docs are turning their attention to the narrowed bile duct that was identified by ultrasound a couple of weeks ago. They called in an expert from Presby, who is going to do an ERCP tomorrow around noon in the GI lab over at Presby. That means Karis will be NPO again after midnight tonight. An ERCP is a procedure similar to an endoscopy by which a long tube will be put down through Karis' mouth, through the stomach to the liver. They will first try to dilate the bile duct with a balloon, and if that doesn't work, they will put in a stent so that the duct will drain properly and not cause future problems to the liver. Karis will be sedated for this process, as she was today for insertion of the chest tube.

12:30 p.m.
(Debbie) Karis was having trouble breathing this morning and intense pain in her back, so a chest x-ray was done and we were just told that she has another pleural effusion about 3/4 of the way up her left lung.  She is back on oxygen, is moving around with great difficulty, and will have another chest tube inserted this afternoon to drain the fluid.  As you know, this is very painful, so please pray for her patience.  It's a gorgeous day here in Pittsburgh and Karis had already asked for a pass so that she could go out and enjoy it.  Obviously that will not be possible now.

8:00 a.m.
(Debbie)  I arrived early at the hospital this morning and Karis was still asleep, so I’ve come to the hospital library to use the computer.  I want to try to clarify a few questions and comments we have received.

 1. There seems to be some confusion regarding the steroid treatment Karis is receiving:  this is NOT the same type of steroids (anabolic/androgenic) that athletes sometimes use illegally to increase their muscle mass and strength.  Those steroids are synthetic relatives of male sex hormones (androgens).  Ironically, the steroids Karis is taking have the opposite effect:  they actually weaken muscles rather than strengthen them.

 

The steroids Karis’ liver rejection is being treated with are called corticosteroids or glucocorticoids.  They are related to the hormone cortisol, which is produced by the adrenal gland.  Corticosteroids are used to treat a variety of medical problems (such as asthma and arthritis), usually in small doses and for short periods of time, since side effects can be severe.  The two primary actions of corticosteroids are to reduce swelling (inflammation) and to reduce the body’s immune response (hence their use for fighting rejection).

 

Because fighting organ rejection requires very high doses of corticosteroids, the side effects are many and problematic, requiring a lot of monitoring and intervention.  Here’s a list of some of what Karis is experiencing:  fluid retention causing swelling in various parts of her body, high blood pressure, fat deposits giving her “chipmunk cheeks” (she HATES this!), difficulty sleeping (feeling “hyper”), high blood sugar (which means finger sticks 6-10 times/day and multiple insulin injections each day), sore/weak muscles, fatigue, dizziness . . .  Not very fun!

 

The good news is that she’s in the weaning phase, which means the doses of steroids are gradually being reduced.  By next week she should be off of IV steroids, but they’re talking about keeping her on a low dose oral steroid to help prevent rejection from happening again.  This would be in addition to the two immunosuppressants she’s already taking:  Prograf (also called FK or tacrolimus) and Celcep.

 

2. People have asked how we can prevent rejection from happening again.  In addition to the medications Karis takes to suppress her immune system, we need to keep praying for God to help her body to accept her new organs.  The studies that have been done in the lab show high reactivity between Karis’s blood and a sample of donor blood.  This may in part be due to the fact that she also carries antigens to her first transplant, so there are actually three different immune systems competing for ascendancy in her body.  It’s likely that Karis will have to maintain a higher level of immunosuppression than many other transplant patients.  This, of course, makes her vulnerable to infections of all kinds.

 

3. Many people are asking how long Karis will need to stay in Pittsburgh, when she can return to Brazil, and what her plans are.  It’s too soon to know specific answers yet, but as a general guideline, we’ve been told to plan on six months recuperation time in Pittsburgh, which would take us to mid-July.  That depends, of course, on how she does.  Karis hopes to be able to return to Notre Dame in August.  She will need careful follow-up (weekly blood tests, etc.) and periodic returns to Pittsburgh for biopsies and check-ups.  Initially, the transplant team has said she may not travel outside the US for three years, but we’re not sure how firmly they will hold to that requirement, especially because a Pittsburgh-trained Brazilian transplant surgeon is now back at work in Sao Paulo.

 

4. Regarding the spleen in the organ pictures that were posted:  we only saw a slice of the spleen; it’s actually a round organ.  The rest had already been thrown away.  And no, spleen transplantation is not done, because people can live just fine without it.  This is true also of the colon (large intestine).  Some centers do transplant the colon, but Pittsburgh does not because it causes complications and increases the likelihood of not surviving transplant.  (Karis has lived her whole life without a colon.)

 

I hope all of this is helpful!  Please do ask questions, because that lets me know what I haven’t explained clearly enough.

Wed., March 29, 2006
(Debbie) We selected a couple of pictures from those taken of the "organ viewing" last week (the organs removed during transplant), and Dan labeled them for you. Here's a bit more explanation:

1. Liver: We saw about 1/3 of Karis's liver, because the other 2/3 had already been thrown away. It's a little hard to tell from the pictures, but the 1/3 was bigger than the normal liver that the pathologist provided for comparison (about twice as thick). The most dramatic aspect of Karis' liver was the green color (from retention of bile), which also doesn't come through really well on the pictures. Actually seeing it helped us understand why we were told--only after the transplant--that the docs had been afraid Karis didn't have much time left to live.

2. Spleen: Due to increased pressure from the liver failure, Karis's spleen, removed during the transplant, was 3-4 times larger than normal, making it vulnerable to rupture. Once again, we thank God for His protection. The major consequence that we're aware of so far of her not having a spleen is that her blood is littered with old platelets that the spleen would have filtered out and destroyed. She's taking a medicine to help control the platelet count in her blood and help avoid unwanted blood clots.

3. Stomach, duodenum and pancreas: The transplanted stomach was sewn onto about 1/3 of Karis's own stomach, and the part that was removed was available for us to see, along with the attached duodenum (all that was left of Karis's original intestine) and pancreas. Microscopic studies showed that Karis's nerve cells are normal in her upper stomach (the part she still has), but were scarce and abnormal in her lower stomach and duodenum, as they had been in the rest of her original intestine. That would account for the difficulties she had in emptying her stomach even after her first transplant (before she got pneumonia and lost the graft). Hopefully that is all dealt with now. Her pancreas looked fairly normal from the outside, but inside it was extensively scarred from the pancreatitis that she suffered before transplant.

We hope soon to conquer the current challenges related to the second transplant, so that Karis can begin to enjoy the new life and health that she hopes for as a result of the new organs in her body, thanks to the generosity of her donor and the perseverance and commitment of the transplant team! (And thanks to Medicaid, paying the huge costs of all this . . .)

Tuesday, March 28, 2006
10 p.m.
(Debbie) Today was a bit difficult because Karis wasn't feeling well at all. Don't know really why, but perhaps related to the steroids she's receiving every six hours. After sleeping for a couple of hours late afternoon she woke up feeling much better, though still a bit shaky. Dr.
Soltys says he started cutting back on the steroid dose today and will gradually wean it through the rest of the week. If she does well through the weekend, they'll revisit the idea of transfer to the rehab hospital early next week.

10 a.m.
(Debbie)  Good news--Karis' liver numbers are finally starting to come down.  Looks like the steroids are working.

Monday, March 27, 2006, 11 a.m.
(Debbie) Karis is in mild liver rejection, but the docs don't seem too worried. They say it's a 1 on a severity scale of 1-10. She's had two big doses of steroids already, which have made her blood sugars go haywire, but otherwise she seems OK. So far her liver numbers have not improved, so I imagine they'll be giving another steroid dose today.

Saturday, March 25, 2006
(Debbie)  My computer is in the shop, and the hospital library is closed, so I've come to the city library to send this update, but only have a few minutes to use the computer so this will be brief.  Karis is doing well.   The camera emerged last night!  We still don't know the results of the liver biopsy from yesterday.  Karis doesn't seem to be sick, so that is encouraging.  If it is rejection, they will give her high doses of steroids again.  Either way she can't leave the hospital until her liver numbers normalize, so she won't be coming anywhere for at least a few more days.

 
Dan is here visiting, which is cheering us up

Thursday, March 23, 2006
(Debbie) Plans are shaping up for Karis to be transferred on Monday to the Children's Institute (rehab hospital).  Meanwhile, we were just informed that her liver function tests are high, and there is concern this might indicate rejection of the liver.  If they have not come down by tomorrow, they'll do a liver biopsy tomorrow afternoon, which she hasn't had to do before.  Always something new!

Wednesday, March 22, 2006
(Debbie) Happy Birthday to Sharon (Carissa's mom)!

Karis has had a busy day, including evaluation by the hospital rehab team of her strength, endurance, dexterity, mobility, etc. They are recommending that she go from here to a rehab hospital for a short stay. They think she will make progress through an aggressive rehab program much faster than she would by doing outpatient sessions two or three times a week. Makes sense, although at first Karis resisted the idea of extending hospitalization. The transplant team is now aiming for discharge from Children's next Monday or Tuesday, assuming she remains stable. First choice is to be transferred to Children's Institute for rehab, where she was last February, but if she's considered too old, they'll arrange for an adult facility.

Karis also had an educational session with a nurse from the diabetes team re. diet, signs and symptoms of high and low blood sugar, giving herself insulin injections, etc. We hope that her new pancreas will soon begin producing enough insulin on its own, but at this point she is still dependent on insulin injections. They're calling it "steroid-induced hyperglycemia," not actually diabetes. When she goes home, she'll have to prick her fingers six times a day to test her blood sugar (including midnight and 3:00 a.m.!) and call the diabetes team here at the hospital every morning to find out how much insulin to give herself that day. I'm sure it's a familiar routine to people who deal with diabetes, but it will be new for us.

This afternoon we went to the Pathology lab to view Karis's old organs, which were scheduled for incineration as soon as Karis had the chance to see them. Bev took pictures, so we'll post a couple of them for you, and if they gross you out, you don't have to look at them. :) I'll save the description for whenever we manage to get them posted. It was a bit shocking to see with our own eyes how bad the liver was (Bev ranked it a 9 on a scale of 1-10 of the worst she had seen), but it made us even more grateful for God's preservation of Karis's life.

Karis is working on her application for re-admission to Notre Dame. It's wonderfully motivating for her to have the goal of being strong and independent enough to return to college in August! She has come so far that we're quite confident she'll be able to do this, by God's grace.

Tuesday, March 21, 2006, 10 a.m.
(Debbie) Happy Birthday to Bach! And it's now ten weeks since Karis'
transplant.

I'm sorry I haven't updated for so long. I keep hoping to learn something useful to comment on. After the first x-ray was done to locate the camera, we were told that it was still in her stomach(!) so didn't yield any useful pictures. The second set of x-rays, done yesterday, apparently show that it has left her stomach and is somewhere in progress through the intestine, but of course it's no longer taking pictures. So yeah: a big build-up and then a fizzle. We're now told that it can take 2-3 weeks for the camera to emerge.

However, there have been no more episodes of bleeding since Saturday, so it seems to us that there's nothing more to worry about, unless of course she should bleed again. Sunday evening Karis did successfully go out on a pass! She wanted to go out to eat, and chose a Thai restaurant where she ate soup, a spring roll, and maybe a quarter of a low-spice dish, the most she's eaten at one time since her transplant. Then we drove up Mt.
Washington and enjoyed the view of the city lights, though it was too cold to get out of the car. Karis was exhausted by the time we got back to the hospital. After resting for awhile, though, she enjoyed the visit of two friends, and looks forward to her next chance to break out of here for awhile.

Meanwhile, it seems we're gradually drifting back to more IV meds. Karis had been taking magnesium tablets, but every other day her magnesium level has been low enough to require a "mag run," an IV infusion of magnesium that requires spending 3-4 hours in bed hooked up to monitors. So now she's back on IV fluids during the night that include mag and several other electrolytes to keep all of her levels balanced out. The amounts are adjusted according to daily blood tests. The intention is that all of this, and her up-and-down Prograf level, will reach a "steady state" that will allow her to go home without depending on IVs or frequent blood tests.

The only other thing that I know of still keeping her in the hospital is a concern about a bile duct which seems to be a bit abnormal (hence the liver ultrasound last week). The test was prompted by some high liver function numbers, but those seem to have normalized. They want to do an MRI to have a closer look at this bile duct, but can't do it while the camera is still
in her body. (You can use your imagination on that one . . . ) Maybe
this liver thing too will prove to be a non-event. We are so ready for re-discovering "normalcy"!

Saturday, March 18, 2006, 9:00 p.m.
(Debbie) Well, the camera hasn't come out yet--it's still somewhere inside Karis, but no one seems worried about that--and we won't know the results of the 57,600 pictures it took (two per second for eight hours) for at least a couple more days. Karis had been granted her first pass out of the hospital this afternoon, and she planned to go to the Sat. afternoon service at Ascension. Just as she was getting ready to go, though, she had another one of those bleeding episodes and they cancelled the pass. We were so grateful it didn't happen in the middle of the church service! So strange--she hadn't had any bleeding since 3:00 a.m. Thursday morning, so we were starting to think it was a thing of the past.

By the way, we learned that Karis is the 39th patient to swallow a camera here at Children's over the past year, so it's been in use longer than we had understood originally.

Karis figured out she has to take about 30 pills per day (it varies somewhat day to day). We hope that number will be reduced a bit before she goes home.

We went to visit Carissa last evening. It's such a delight to see her doing so well!!! Montefiore Hospital is connected to Children's by an indoor walkway, so Karis doesn't have to get a special pass in order to go there. We just have to fit it into her schedule. She's been walking more of the distance and riding less each time we have gone.

Thursday, March 16, 2006, 8:30 p.m.
(Debbie) Well, it's for real, not sci-fi: tomorrow morning at 7:00 Karis is scheduled to swallow a miniature camera enclosed in a capsule. It's tiny for a camera, but a big pill to swallow. She'll have receptors attached to her abdomen that will feed two-per-second pictures into a small computer that she will wear on a belt, as the camera travels through her intestine. When the journey is over, the pictures will be downloaded onto a regular computer. Hopefully they will identify the source of the bleeding; otherwise, I suspect the pictures will be rather boring. (My dad asked on the phone this morning, once they find the source of the problem, which of the transplant docs will be miniaturized to go in and fix it . . .)

The process today of getting ready for this marvelous experience has not been so fun: only clear liquids all day, and having to ingest horrible stuff to completely clean out her intestine. She gave up on drinking it and asked to have it put in through her G-tube, a stroke of genius. Besides that she was stuck in her bed hooked up to monitors for several hours while receiving an infusion of magnesium, and after that was taken downelevator for a looong ultrasound exam of her liver. Maybe that was the best part of the day, because she got a nice nap. No, actually, the best was having a series of kind visitors, and hearing the amazing news that Carissa is already released from ICU to the transplant floor over at Montefiore!! Unbelievable!

Wednesday, March 15, 2006, 3:45 p.m.
(Debbie) Dr. Squires just came to talk with me in the surgical waiting room about the endoscopy. They saw nothing amiss from the top (through her mouth into her stomach and the upper part of her intestine). From the bottom, through her stoma, blood was present in the intestine as far up as they could go, but they were unable to determine where it's coming from. Dr. Squires said the next step is either an angiogram, to try to discover which blood vessel is bleeding, or having her swallow a capsule containing a miniature camera that will take pictures as it travels through her intestine (really--I'm not making this up! These have apparently been in use here at Children's for a whole month already!). Dr. S will discuss with the transplant team what they want to do next. He said that the good news is that this is clearly NOT related to rejection, so in comparison to that, it is only of secondary concern. That is very comforting!

As soon as they call me from the recovery room I'll be able to see Karis and accompany her back to her room.

Tuesday, March 14, 11 p.m.
(Debbie) First of all, for details and updates on Carissa, see www.monkeygirl.atfreeweb.com/updates/current_update.htm She's doing amazingly well! We are so grateful to God.

When I got back to Karis' room from the waiting room at Montefiore about 1:30 a.m. after Carissa was successfully out of surgery (yes!!), I learned that Karis had another bleeding episode from her stoma, almost identical to the night before, even to the time that it happened! Since it wasn't clear what was really going on with her, and I didn't want to come home and then be called back at some odd hour of the night, I decided to stay with her at the hospital. The rest of the night was peaceful, and there hasn't been any sign of blood today, but the docs think we need to check out what caused it, since that much blood came from somewhere. So she's scheduled for the OR around 10 or 11 tomorrow morning for both an endoscopy (looking at her stomach and upper intestine) and a more thorough ileoscopy (going up as far as they can through her stoma). They want to do it under general anesthesia so that they can have the freedom to do a more careful job. They'll be repeating biopsies both from the top and from the bottom, although they suspect this is more likely a gastric or intestinal ulcer or just a small area of irritation than that it is rejection. We questioned whether the endoscopy is really necessary, and they agreed that there's a good chance they won't find the source of the blood, but they feel that it is important to try.

Long story short: she's not coming home from the hospital quite yet. But she's doing really well in almost every way, so we think that once we deal with this little "blip," the docs will soon start talking again about springing her loose. Karis is more than ready for a break from hospital life. (You may remember that the longest period Karis had out of the hospital at one time during 2005 was five and a half weeks. That was when she got to visit "her class" at Notre Dame before their graduation, and then spend four weeks in Brazil. She had one other five-week period out during 2005. All of her other home breaks were shorter than that.)

Prayer requests:
1. Find out, if possible, what caused the episodes of bleeding, and how to treat it.
2. Figure out ways to make the hospital time not just bearable, but actually profitable.
3. Karis still has low energy, so even though she has ideas of things she'd like to do (e-mail, for example), her actual accomplishment is still very limited. Please pray that she can be patient with the healing process, that she can sleep better at night, and that she will be able to eat more (often she doesn't eat at all, or just two or three bites).
4. Continued protection from both rejection and infection; continued healing of her incision.
5. For Justin in the ICU, and Ian as he goes home tomorrow.

THANKS!

Monday, March 13, 2006
11:30 p.m.
Carissa is basically through her surgery, they're just closing up. Things went really well. More details tomorrow.

7:30 p.m.
Carissa is stable, but is still in surgery, and will be for a few more hours.  Her mother, grandmother, and sister are together waiting at the hospital.  Carissa’s father is catching a 24-hour flight from Thailand tonight, so is hoping to be in Pittsburgh by 11:30 Tuesday night.  Karis was able to spend some time with Carissa’s mom in the waiting room today.

2:00 p.m
Carissa, a friend of Karis and someone we've also talked about on this site, went into surgery for transplant this morning (Monday) at 8:30!!  What an answer to prayer!  Please pray for her, her family, her doctors, and the donor family just as we’ve been praying for Karis.

10:00 a.m.
(Debbie) Karis didn't have to go to the ICU. The bleeding stopped and her vital signs stabilized. Dr. Squires said the scope looked perfectly normal. He went up as far as the scope would allow and saw no indication that there had been any bleeding. He suspects that it was a small blood vessel in the stoma (the part outside of her abdomen). The night nurse said that's not what it looked like to her, nor to Dr. Bond who was called in. But we're delighted and relieved that everything looks OK--not really excited about dealing with another rejection. We'll know for sure when we get the biopsy results.

1:00 a.m.
(Debbie) I just received a call from the hospital saying that Karis suddenly expelled a large amount of blood through her stoma. They're giving her a unit of packed cells now to replace what she lost, and say that if she bleeds any more they'll have to take her to ICU. Our fear is that this may be a sign of rejection. She's scheduled for a scope and biopsies around 8:00 this morning. Appreciate your prayers!

Saturday, March 11, 2006, 6:00 p.m.
(Debbie) It's been two months since Karis' transplant, and we have so much for which to thank God. Oh--she says she'd like to write to you, but she's too busy eating. :) Today she seems to have found her appetite! That's a wonderful answer to prayer.

Today Dr. Bond told us he thinks we can plan to go home by the end of this next week! What's needed yet is a bit of "fine tuning." Every day some adjustments are needed to keep her fluids, electrolytes, immunosuppression, blood sugar, blood pressure, etc., in proper balance, and that depends on frequent blood tests and other monitoring. Several times they've switched the type of formula she's receiving through her J-tube, trying to find just the right combination. But she's completely off of oxygen now! The BiPap machine has been replaced by a card table and 1000-piece jigsaw puzzle (much more fun). And she's on IV's now only for occasional medications.

Karis is finished eating now and has snuggled back down in bed. She says to tell you she cannot now write to you because, she says, "All action springs from dissatisfaction" and she is presently too content and happy. So I guess you're still stuck with me.

This morning in physical therapy Karis walked about 400 yards and climbed up and down eleven steps. She's getting ready to tackle the 47 steps up to our apartment--one floor at a time!

Every so often when I look at Karis I am overwhelmed by the wonder of having someone else's organs functioning in her body, and by the miracle of the new start in Life that this person's generosity is giving her. I am so grateful that Karis' donor was so healthy and took such good care of herself, never indulging in habits that would have hurt her. Because she never smoked, her lungs were also transplanted, giving new life to another person. I can hardly bear to see people smoking now. I find myself wanting to yell at them, "Don't you know that you'll never be able to give your lungs so that another person can live??!!"

Well, enough of that. Please remember to pray for the family of Karis' donor. And would you please pray for Carissa, who is still waiting for her transplant? Thanks.

Wednesday, March 8. 2006
(Vera, a friend of Karis' from Notre Dame) Karis and I had a wonderful visit this past weekend... This was my first time seeing her post-transplant, and it is truly delightful to be with her and realize that now she can actively strive to become well, now that the time of waiting to be called for transplant is done!  It was such a blessing to share conversation and prayer (and food -- hurray!!!) with her  : )

While I was in Pittsburgh with Karis it occurred to me that it might be fun for her to have a map of the world, on which she could mark the locations of all the people who have been keeping up with her through this website.  So, Debbie is going to get a map to hang in Karis' room in the hospital, and I've set up an email address especially for this, at kariskornfield@gmail.com. If you would like, please send her an email there with your name, where you live, and of course anything else you'd like to say.
 
It is always nice to have reminders of love and well wishes, and this is something that Karis will have as a keepsake of this time. I will also try to post some kind of report on this website about the replies, so that you also will have some small idea about how wide this circle of love for Karis has become. Thank you to each one of you for being part of it!

Tuesday, Mar. 7, 2006, Midnight
(Debbie) Lots of good news today: no more TPN, oxygen is down to 1 liter during the day, no rejection in biopsies from yesterday so now they're going to biopsy only once a week and the dose of steroids was reduced. And the chest x-ray looks good! The chylothorax seems to be resolved, at least for now! Best news of all: the docs are starting to talk about getting Karis ready to go home, because much of the care she's receiving now I can do for her at home. Goals for coming home: no more oxygen and no more IV meds or fluids! Sounds like a dream!

Monday, March 6, 2006, 11:30 p.m.
(Debbie) As Karis' recuperation continues, we hope (!) it will be increasingly uneventful. Please don't be concerned if we don't post news every day. It just means things are going well and there's not much to say. Take it as GOOD news!

Today was a rather difficult day, not because of any big problems but just a series of small frustrations on top of feeling really draggy. Some adjustments were made in her medication schedule that I think will result in better sleep at night and more energy during the day.

Karis is strong enough now that she's starting to be able to process what has happened to her in the last two months: one of the biggest surgeries known to mankind (following months of debilitating illness). There's quite a lot to deal with emotionally. It's good to see her starting to talk about it, beginning to unpack all that got "stuffed" down in order just to make it through each day. It's a new phase of recuperation, challenging but good. If you happen to catch her at a tearful moment, don't worry--they're probably "cleansing" tears, and very healing.

(The following may be more detail than you want--if so, skip it! I just thought it would help to understand what we're talking about when we refer to her incision healing.) Patty measures Karis' open wounds every Monday morning, and it's gratifying to see them getting smaller, though the healing process will still take a long time since they have to heal "bottom up," from the inside out. Today the one on the right measured 8 1/2 cm by 3 cm by 1 1/2 cm deep (that's about 3 1/2 in. by 1 1/4 in. wide by 3/4 in. deep). The one on the left is
3 cm (1 1/4 in.) by 1 cm (about 1/2 in.) by 1 1/2 cm (3/4 in.) deep. Both wounds also "tunnel" significantly under the skin around the open part, and the "tunnels" have to heal before the main part of the wounds so that no space is left where an abscess could develop. As we've said before, it will take time and TLC (including good nutrition), but we have plenty of both!

Sunday, March 5, 2006, 7 p.m.
(Debbie)  Karis' friend Vera has spent the weekend with her, which has been a very special treat.  She has also enjoyed other visits and phone calls.  It's so nice to have the relative freedom of 7 North!  (To clarify:  7 North is the transplant unit in Children's Hospital, one floor up from the ICU.  Karis has a private room because she's in isolation, which means she can't be around other immunosuppressed patients who might catch one of the viruses she carries.)

After the excitement and activity of the last two days, I guess it's not surprising that Karis has been pretty tired today.  They pulled her chest tube (ouch!), because it hasn't been draining.  We don't know yet whether she may need to have another one put in a different location to continue draining what is left.  They're going to give her a few days to see what happens to the level of fluid that remains.  She is delighted to be able to eat again--a soft, lowfat diet.

Another question we have received is how to write to Karis now that she's out of ICU.  Use the same address, but substitute 7 North for PICU.  I hope that tomorrow she'll feel well enough to check her e-mail again.

Please pray for our little friend Justin, who is not doing well.  His mom, Lisa, has been an example to us of courage and faith through years of this roller-coaster life.  And please pray for Jeremy's family.  He's been taken home to hospice care, because the hospital can't do any more for him.  His bed was beside Karis's for a long time in the ICU.  Thank you!

Friday, March 3, 2006, 11:30 p.m.
(Debbie) Karis had a good day, enjoying the relative freedom of her room on 7 North and all of the TLC from nurses who have known her for a long time. Actually, she spent most of the afternoon out of her room, so apologies to anyone who might have tried to call. She had to go downstairs (should I say, "downelevator"?) for an x-ray, and then had physical therapy, using her shoes and brace for the first time since transplant, and then was offered the chance at a computer in a small room off of the 7 North playroom that is used for patients like her who are in isolation and can't be around other kids. So for the first time in two months she checked her e-mail, and spent a couple of hours starting to get caught up. All told, it was the longest period of time that she's had out of bed since the transplant, and the most time she's spent reading anything. She received a blood transfusion while she was using the computer, and ended the day feeling stronger and in good spirits.

The x-ray showed that she still has an estimated 200-300 ml of fluid at the base of her lungs, so the chest tube has to stay in and she still can't eat. (By the way, if anyone is curious enough to look it up, try "chylothorax" instead of "kylothorax" as I spelled it yesterday.) Other than that, though, she's doing very well. The biopsies from yesterday showed no rejection, praise God.

Thursday, March 2, 2006, 11:30 p.m.
(Debbie) Rejoice with us! Karis was moved this evening to room 28 on 7 North. She has a phone now, which receives incoming calls from 7 a.m.-9 p.m. (the hospital switchboard number is 412-692-5325). Visiting hours are officially 10 a.m. to 8 p.m., although they haven't enforced the 8 p.m. limit very rigidly in the past. The lovely flowers sent by WBC are in place brightening her room. Another step forward!

Dampening Karis' enthusiasm is a new restriction: she can't eat (though she's allowed to drink water) until the kylothorax is resolved (that's the lymphatic fluid draining into the space around her left lung, instead of into the subclavian vein). Add to that a fair bit of discomfort from the chest tube, tiredness from not sleeping much last night, and grieving for Alli, whose funeral is tomorrow, and already missing her dad, who left for Brazil today, and what you get is less than exuberant celebration. But a good night's sleep tonight should help everything look a little brighter tomorrow.

Wed., March 1, 2006, 10 p.m.
(Debbie) Karis has decided to give up the ICU for Lent. :)

But she can't do it today. We waited all day, after the orders were written for transfer to 7 North, but a room did not open up for her. Maybe tomorrow . . .

We decided it would be all right for her to add a day on the other side of the forty days in order to complete her Lenten discipline. :)

Tuesday, February 28, 2006, 11:30 p.m.
(David) Today was a quiet recuperation day after yesterday’s small surgery.  More than two liters have drained from under her lungs through a tube in her back.  She has little energy, but her prograf (22.4) and sugar numbers are all stable and good.  She gained a unit of blood. 

Prayer request: trhat she sleep well, recovers her strength and can move Wednesday or at the latest, Thursday, to the normal floor and her own room. 

Monday, Feb. 29, 2006, 10 p.m.
(Debbie) Carissa and her family say THANK YOU to all who contributed toward her iPOD. She's enjoying it and appreciates the kindness of so many people who don't even know her!

I'm glad the docs decided to tap Karis' lung--actually, not the lung itself, but the space around her left lung. It quickly drained 1 1/2 liters of milky fluid, and from the CT scan they think there's at least another 1/2 liter still to drain. Karis has a "pigtail" drain in the left side of her back. It was a painful procedure but should soon help improve her lung, now that it's relieved of that pressure. Dr. Sindhi thinks the fluid is lymphatic fluid that has not been able to drain into the venous system because of pressure from the two catheters that are together in the subclavian. I don't understand all of the implications of this situation yet, but the initial action taken was to stop giving lipids along with the TPN. I'm sure I'll have a chance to learn more tomorrow.

Monday, February 27, 2006, 1:00 p.m.
(David) The CT scan showed that the liquid under Karis’s left lung has increased, causing additional breathing difficulties and maintaining her dependent on the bipap and nasal canula.  Today at 2 p.m. they’ll do a small surgery with the help of ultrasound to penetrate her chest, drain the liquid and leave a temporary drain in place.  We trust that this will solve her breathing problems and that she can go up to 7 North tomorrow or the next day.  Her sugar continues to bounce between too low and too high, but at least the prograf seems to be under control for now.  :)

Prayer request: principally for Allie’s family and friends and the transplant team as they work through the implications of her death.  She is either the first or one of the first to die from intestinal rejection at Children’s since the new protocols were established about three years ago. 

Sunday, Feb. 26, 2006, 3:00 p.m.
(Debbie) Some have asked how they can learn more about Alli. She has a care page at www.carepages.com/home. The name of her page is allibetht (for Alli Beth Thompson).

We've also received questions about when Karis will definitively accept her new organs so that she doesn't need to worry anymore about rejection. Unfortunately, she will have to be concerned about rejection for the rest of her life, and will have to follow a rigid schedule of immunosuppressants, blood tests, and periodic biopsies. We've been told lots of stories about people who started to relax on following their protocols after a while because they were doing well, and some of them ended up in serious trouble or died. One of the important factors to figure out in these next weeks of recuperation is exactly the level of immunosuppression Karis will need to keep her from going into rejection. That number is a little different for each person.

I'm feeling a lot better, well enough to go see Karis for awhile this morning. She was sleeping when I got there and my first impression was that she was very pale. A look at her hemoglobin and hematocrit showed why--8.8 and 25.5. They transfuse once she gets to 8, so I imagine that will be coming up this week, and then she'll feel stronger. Her blood sugars have been all over the place. Just while I was there they dipped to 45, then 107, then 345, then 116--within the space of two hours! In preparation for going to the floor, they've stopped the insulin drip and are trying to figure out a good pattern of insulin injections. Haven't quite got it yet. They've decided to continue a small amount of TPN over 12 hours for another week, to keep her incision healing well, so that's one of the tricky factors. Another is that they stop her J-tube feeds an hour before and an hour after each of her twice-daily Prograf doses. And her eating is still extremely irregular.

Dr. Soltys told us this morning that there is a persistent pleural effusion on the left side of her lung that seems to account for her difficulty in keeping her left lung well inflated. He wants to do a CT scan to see how much fluid is there and whether they should put a tube in to drain it. That might get her over the hump with the respiratory problems she's had. She's back up to 4 liters today after being on the BiPAP all night.

That's it for now! I've come home to rest so that I can go back over to the hospital for the evening.

Sunday, February 26
(David) “It’s Friday… but Sunday’s a-comin’!”

 
Jesus’s irresistible smile greets her.
“I’m home, Jesus!” she laughs,
“Yes, you really are!”
She hurls herself into his arms, “I love you sooo much!”
Jesus’ smile grows bigger yet.  “I know you do, my cutie pie.  I love you sooo much too.”
She snuggles down and sighs deeply; the cares of the whole world rolling off, “Isn’t it wonderful?” 
“Ahh,” he whispers, “you’re wonderful!”
“Have you been waiting for me very long, Jesus?”
“No, sweetheart.  I was with you the whole time, every day.”
A tear escapes.  “Even in the ICU when Mommy and Daddy couldn’t hear me and didn’t know what I was saying?”
Kissing her tear, “Yes, sweetie, especially then.”
Now it’s her turn to whisper, “Ohhh!”
A moment of eternity rolls by. 

Allie pulls back a little to look into his face, “Jesus, are Mommy and Daddy okay?” 
His eyes brim, making rainbows.  It’s his turn for a tear to escape.  “They will be, honey.  They will be.”
“Oh, good!”  Solemnly she kisses his tear and looks into his eyes.  That care is lifted and she snuggles again.
“When will they get here?”
“Soon, sweetie, very soon.” 
“Ahhh.”  Another moment of eternity rolls by. 

&n