Karis Kornfield

4 ~ 2 May 09

What We Can Do

Karis Kornfield

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

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

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

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

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

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

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

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

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3 ~ 1 May 09

A Little About the Brazilian Education System

Karis Kornfield

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

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

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

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

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

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

---

2 ~ 30 Apr 09

C E V A P

Karis Kornfield

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

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

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

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

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

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

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

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

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

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

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

What Makes Me Angry

Karis Kornfield

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Live plants and flowers are not allowed in the ICU.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Let "those people" beware!

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

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

More later . . .

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you for caring enough to want to understand!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We are enjoying a visit from Diane Morris of Colorado Springs.  This afternoon Diane participated in a spontaneous tea party in Karis's room that developed when Dr. Costa told Karis she could have 1/4 cup of any clear liquid and she chose hot tea.  The party included three other