More updates ~
	6 ~ updates on Karis

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.

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!

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!

Friday, Feb. 10, 2006
10 p.m.
(Debbie) Lots of good news today: no more rejection, better cardiac and renal function, almost ten hours on the nasal canula before she got too tired and had to go back on BiPAP. One reason she was tired is that she went on a "road trip" this afternoon! Her nurse engineered a wheelchair ride outside the unit down the corridors of the floor we're on, with a full entourage of people to help with the IV poles, hi-flo oxygen machine, monitors, etc.--quite a production!! Our friends Georges and Nancy helped. I actually missed it, because I was taking advantage of their visit in order to do some errands. I think Georges took a picture for you though (he took the one posted yesterday also).

The other exciting thing today is that Karis was allowed to eat an orange popsicle! This was the first thing she's been allowed to have orally other than ice chips and medicines. She relished every bit.

Karis spiked a bit of fever this evening, and blood cultures were sent off once again just to be safe. It reminded us of that tightrope she walks between rejection and infection: to fight rejection, the immunosuppression is increased, but that makes her more vulnerable to infection. So, my prayer request today (AFTER praising God for all of the progress!) is that God will protect her from infection and allow her to keep taking steps forward. Thanks so much!!

10:30 a.m.
(Debbie) We were just informed of the biopsy results: NO MORE REJECTION!!!! Hallelujah!

Thursday, Feb. 9, 2006, 11 p.m.
(Debbie) Karis had a good day! In just about every way she's doing better. She stayed on the nasal canula today for 12 hours without stress. No news on the biopsies yet--we'll find out tomorrow morning. Please pray that the Father will continue to hold her, fold her into Hope.

Wednesday, Feb. 8, 2006, 11:30 p.m.
(Debbie) It was overall an encouraging day. Karis did OK on the nasal cannula for about 5 hours this morning before having to return to the BiPAP, and had another 3 hours or so break from the mask this evening. She sat in the chair for an hour this morning. She looks terrific with so much water weight off her body--her tummy actually looks semi-normal size, and she's much more comfortable. The wounds are healing well; it's so nice to see, even though we know it will still take a long time for complete healing.

From comments people have made, I should clarify that the rejection detected Sunday night is in the lower part of Karis' new intestine, not in her stomach. They are calling the source of the bleeding in her stomach a stress ulcer. No fresh bleeding today, though still draining a lot of old blood, so she still needs the NG tube (out her nose) as well as the G-tube.

Karis had to go back on the heart medication today, and two new meds were started for high blood pressure, probably due to the steroids. Her kidneys, though, are doing better!

I've been asked for a reminder of what organs Karis had transplanted. They
are: small intestine, duodenum, stomach, pancreas, and liver. And what's keeping Karis in ICU: respiratory and cardiac issues. The rest can be handled on 7 North.

I've also been asked to identify the main prayer request for each day. I'm most concerned right now about Karis' discouragement over going into rejection. That was very hard news for her, and I'm really hoping for good news from the new biopsies that will be performed tomorrow. (We won't know the results, probably, until Friday.) Tonight when I went back into the ICU after being out while a friend visited, she said to me very seriously, "Please take me home." I'm sure it feels to her that she has been in ICU forever. Her dad has set the goal of getting out of ICU by Feb. 17. We wouldn't mind if it could happen even sooner! THANK YOU to each one for going out of your way to cheer her through cards, gifts, and visits. We so much appreciate each one!

Tuesday, February 7, 2006, 12:00 noon
(David)  Karis was awake from 4:30 a.m. to 8:30 a.m. and then slept the rest of the morning.  She continues without clinical signs of rejection (fever, problems in intestinal output).  Her heart is having some problems, so they’ve resumed the medication for that.  Lungs look a little worse on the X-ray, though her breathing doesn’t show it.  Thanks for accompanying us in prayer! 

Monday, February 6, 2006
11:30 p.m.
(David) Contrary to what we expected, the biopsies showed active rejection.  Karis has begun five days of steroids and they will try to maintain the prograf around 20.  It was 18.6 this morning and 17.5 tonight, but both times they gave an additional dose after hearing about the level.  They’ll do a new endoscopy through her iliostomy on Thursday to see if we’ve turned the corner on the rejection.  Karis is exhausted and slept almost all day.  She continues bleeding in her stomach.  Something (steroids?  The entubation and ventilator) caused hearing problems for Karis; she only hears when someone speaks loudly.  This happened a year ago and was resolved through cleaning and treating her ears, which should happen tomorrow.

The good news: Karis’s incision and wounds are visibly healing; for the first time she’s no longer bleeding or draining from them.  Her breathing is much better.  She came off the ventilator at 4 a.m. and at the end of the day stayed on the nasal canula for four hours, before going back on the BiPap to sleep tonight.  Six days ago she had the beginning of heart failure.  In those conditions, the heart tells the body to retain liquids.  She gained 4.4 kilos (close to 10 pounds) in three days.  This of course made her respiration much more difficult.  In the last three days, with heart treatment and the effects of the good nutrition, she lost 7.2 quilos (a little over 15 pounds), now weighing 47.3 kilos (104 pounds).  In this case, the weight loss is positive and they’ve stopped the heart medication.   Even though exhausted, Karis sat in the chair by the side of her bed for almost an hour.  She opened five of the 44 cards she received today.  Her kidneys have improved markedly.  She had no fever and her ileostomy functioned normally (two signs that the rejection is not yet severe).  Her stomach is markedly less swollen (down from 95 cm to 90 cm).

As you hear daily how many things can and do go wrong, you can understand why hospitals need ICUs.  I think the nurse has to note approximately 70 numbers or written observations per hour on Karis’s chart.  And that doesn’t count the respiration therapists chart, nor the ICU medical teams charts, record and computerized lab information, written doctors’ orders, list of medications she receives daily and so forth! Without the careful care Karis receives, it’s doubtful she’d have survived these first 26 days since the surgery. 

2 a.m.
(David) The endoscopy results don’t show signs of rejection.  Alleluia!  The biopsies will only be available in 24 hours, but the visual part was very positive.  Her prograf level leaped after a high dose, reaching 25.  Dr. Sindhi says that it’ll probably go a fair bit higher since it takes a while for the effect of the doses to manifest themselves.  We are all encouraged.  The source of bleeding seems to be hidden behind a blood clot.  Dr. Sindhi feels the bleeding problem will resolve itself without any further intervention.  Thank You, Jesus!

Sunday, February 5, 2006
11:00 p.m.
(David) Karis’s stomach may be entering into rejection. They are taking her to the OR now to entubate her and do an endoscopy of her stomach. She bled from her G tube most of the day yesterday (Saturday) and today. Tonight she vomited blood, coming up from her stomach instead of going out through her G-tube. This morning her prograf level was 10.8 after increasing considerably the prograf dose. That means that she’s had 48 hours at that level or lower and has not had the protection she has needed against rejection (which would be a level of 15). Dr. Sindhi is afraid that the stomach may be entering into rejection. Pray that wouldn’t be the case and if it is, that they will be able to rapidly turn things around.

8:00 a.m.
(Debbie) I just read David's update from last night, and noticed that he didn't comment on a lovely conversation we had with Karis. While she was on the nasal cannula and able to speak more freely, David asked how her spirits are, how she's feeling about all that's happening. She said, a little at a time over several minutes (a few words, stop and breathe for awhile, a few more . . . ):
"Deep down, I feel joyful and thankful. But I don't have the strength to express that very much. All of my strength has to go into healing. I know things are going to get better, but right now it takes all I've got just to get through each hour, each day. I look forward to having energy to give to other people. I know we're going to get through this hard time."

David also didn't comment on the concern we feel about the low FK (also called Prograf or Tacrolimus--her immunosuppressant) level. To prevent rejection, it's not supposed to go below 12, and they're trying to keep it at 15. It went as low as it did because of nursing error, and we have never seen our transplant doctor so upset. "We have all invested so much! I will NOT see it thrown away by something as stupid as this!" PLEASE PRAY with us for God's mercy and protection over Karis' organs!

Saturday, February 4, 2006, 12:00 noon
(David)  It was a good night and a good morning! J  Karis slept well and this morning, stayed in the chair for over an hour, taking small steps and holding her own weight on her feet in moving from the bed to the chair.  She did everything with relatively little stress (in contrast with previous days) and was on the nasal canula for an hour without any problems.  Good indications of the lungs doing better.  Kidneys stable.  No fever yesterday or today.  Other small adventures include the J tube coming out of the jejunum, blood in the G tube coming out of the stomach (sign of stress), bleeding from her nose and from irritation in her throat due to the BiPap, removing the urinary catheter (one less avenue for infection) and low prograf of 9.5.  Just another ordinary morning in the ICU! 

Friday, February 3, 2006
11:00 p.m.
(David)  Low points: the kidneys were a little worse; her “J” tube came out during the night and the area into which they put a new tube back in bled quite a bit tonight when Karis sat in a chair.  She only tolerated the nasal canula for half an hour before having to go back on the BiPap.  Her platelets are high, normal being 150,000 to 400,000 and she’s at 1.3 million, which means she clots more than usual and brings a threat of thrombosis.  The doctors debated all day whether they should put her on the respirator because of increased questions about her lungs. 

High points: Visits from Timmy, a guitar-playing friend and Jonathan, our pastor.  No fever all day!  Breathing slowly and well.  She sat up in her bed without any support for her back for about 15 minutes this afternoon and then sat on the chair beside the bed for more than an hour tonight, helping make a puzzle and play a table game.  She doesn’t have a lot of energy, but she certainly has more than yesterday.  Her wounds show signs of new tissue.  She’s doing her level best to negotiate being allowed to “go for a spin” in the hospital corridors in a wheelchair so she can see something other than the ICU.  The biggest problem in that regard is the number of monitors, tubes and pumps that would have to join her.

Major prayer requests: that the lungs would get better once and for all (I don’t know if we need to go on the ventilator to get there) and that the possible small signs of rejection lead to nothing.

7:00 a.m.
(Debbie) Whoa! Stop!! From the e-mails I've received, we already have enough to buy an iPOD for Karis AND one for Carissa (as someone so perceptively suggested would really make Karis happy!). Y'all are amazing!!

I appreciate all the advice as well. Since I'm a novice, a knowledgeable friend is coming over tomorrow to help me make the purchase. I'll let you know how it goes. Don't worry--I'll find someone who knows what he/she is doing to actually copy Karis' CDs onto the iPOD. :)

Thursday, Feb. 2, 2006,
10 p.m.
(David)  Karis didn’t sleep well from Wednesday to Thursday, starting Thursday exhausted; she slept as much as she could during a good part of the day.  She sat up on the edge of her bed for about 20 minutes tonight.  Her new organs continue to do well, but we are entering the window of time when rejection is the most likely to happen if it’s going to happen.  The doctors are being more cautious about maintaining the level of prograf (anti-rejection medicine) a little higher, at 15.

The X-ray at 4 a.m. Thursday morning indicates that the lungs have taken a hit, so Karis stayed on the Bipap all day long.  As a result she had an excellent day with all the numbers related to breathing and oxygen in the blood being excellent.  Since she needs to concentrate all her energy on healing, the doctors are saying that if she shows any stress in breathing, they want to entubate her and put her back on the ventilator so that no extra energy will be spent in breathing.  The CT scan showed no source of infection.  Karis’s high level of TPN nutrition is beginning to bear fruit as the doctor say they are seeing the signs of new tissue in her wounds for the first time in three weeks.  Alelluia!

Karis’s friend, Carissa was called to prepare for a possible transplant late this afternoon.  We waited on pins and needles to see whether it would actually happen, preparing to stay up through the night with puzzles and games with her parents.  To everyone’s keen regret, the organs did not measure up to what was needed and the transplant was canceled.  Thank you for sharing our prayer burden for her.

9 a.m.
(Debbie) When I woke up this morning, I lay in bed for a few minutes thinking about how easy and free my life is. I breathe without thought or effort; I move without pain or restriction. I get up, go where I like, eat and drink, shower, wear whatever clothes I choose. I have access to telephone and internet. I can cross the city by car or bus or choose to walk . . . the list goes on and on.

None of this, of course, is true for Karis right now. She's stuck in a bed (too exhausted to get out of bed the last few days) and just about every part of her body is attached to something: three IV lines in her neck, two under her arm, one in her right wrist; an arterial line in her right femoral; three leads on her chest and a pulseox on a finger or toe attach to monitors behind her head. Three drainage tubes, a feeding tube, and the BiPAP mask on her face complete the picture. The mask is held on by two straps around her head. When it's on, she can't wear her glasses, which means she can't even watch TV. The noise of the BiPAP makes it hard to hear people talking or music, and severely restricts her ability to communicate verbally. Her huge tummy makes it hard to get comfortable (anyone who's been pregnant can relate to this). If she lies flat, her stats go down because of fluid around her lungs. If she sits up very far, her big tummy pushes into her lungs and she feels suffocated. The infected incision goes all the way across her tummy and is open and draining at both ends. The center area, where the vertical incision crosses, is a big mess, and the vertical incision is also open and draining at the bottom. Frequent soiling from blood and other stuff makes it impractical for her to wear anything other than the charming hospital gowns. She has people messing with her in one way or another every few minutes all day and all night. She's in a big room with ten beds that's never dark and never quiet. If we close the curtain around her small bedspace for very long, she feels claustrophobic; if the curtains are open, she's participating to one degree or another in the drama of nine other critically ill patients. Her fevers leave her alternately shivering, flushed and hot, or sweaty. She can't even wipe her face unless someone brings her a washcloth and briefly loosens the mask. Every three days, she has a new nurse starting from scratch to get to know her and learn her care.

As I walked to the hospital, relishing the fresh morning breeze, praying for some measure of joy and freedom of spirit for Karis even while her body is so restricted, and wondering how I can brighten her world today, the thought suddenly came to me, "an IPOD for Valentine's Day"! Something small enough that she can manipulate it herself without having to change CDs; something that can give her pleasure and inspiration that's under her own control, that she'll be able to listen to with the little earphones that go in your ears . . . The more I thought about it, the more excited I got. An IPOD costs about $200, which seems like a lot . . . but then I started thinking, if 40 people each gave just $5, we could do it!

At first I thought that maybe I should try to do this as a surprise, but then I realized that it could be really fun for Karis, if people want to do this, to receive cards with $5 gifts and have the pleasure of watching something come together a bit at a time until there's enough to go and buy it, and then every time she uses it, she'll be reminded of people's love for her. So far she has received four cards here in ICU, and since she woke up, has savored each one. What if there were forty, delivered to ICU with her name on them! It would be such a tangible evidence of what I know is true, that many people are thinking of and praying for her.

What do you think--shall we go for it? If you would like to participate in this "IPOD for Valentine's Day" project, or even if you'd just like to send a card or letter, use the following address:
Karis Kornfield
PICU, Bed 16
Children's Hospital of Pittsburgh
3705 Fifth Ave.
Pittsburgh, PA 15213
Thanks! I'm excited!

Wednesday, February 1, 2006
10:30 p.m.
(David)  Karis is really tired, but resting well at the end of the day.  She’s breathing well with the help of the BiPap and her fever is under control by virtue of Tylanol every six hours.  The Tylanol is also helping with pain control and she hasn’t had much pain.  She looks a lot better than last night.  Few changes; CT scan at 8 p.m..  Results tomorrow. 

12:30 p.m.
(David)  You remember that two days ago we put Mary Lou’s e-mail on the site.  She suggested that people fast with the purpose of asking God to help Karis’s intestines absorb better.  The next day, Dr. Sindhi told us that her intestines weren’t absorbing well and we needed to go back to the TPN (with150% of normal daily calories).  I’m impressed that Mary Lou sensed from God the need for special prayer and fasting before the doctors indicated that Karis had a problem in this area. 

When Karis heard of Mary Lou’s e-mail, she said that the fast should include her friend Carissa (27-28 years old) who is still waiting for a similar transplant to Karis’s (but only weighs about 70 pounds).  She is so thin that she needs a child’s organs, which are harder to get.  Please intercede that her transplant would happen soon. 

Karis continues with fever and breathing difficulties.  They don’t want to give her narcotics for pain since they would slow down the lungs, intestines and liver.  Her kidneys continue to gradually improve, having gotten about 1/3 better than their worst point.  Karis needs to be on the BiPAP most of the time now.  This covers her face, impeding conversation.  She’s retaining liquids.  She didn’t sleep well last night so slept when she could this morning.  She’s scheduled to have a CT scan of her lungs and abdomen to see if they can find any basis for infection.  They’ve started a new general antibiotic even though nothing has cultured positive yet.  She began to drain out of yet a third place in her incision, so they opened that up so it would drain well.  Now she has three open areas along the lateral ends of her incision and bottom end.  She needs to absorb the nutrition from the TPN so she can begin to heal in these three places as well as all over.

Tuesday, January 31, 2006, 10 p.m.
(David)  Today wasn’t a good day.  Karis worsened visibly from yesterday to today and from the day before to yesterday.  She has little energy and difficulty breathing.  Dr. Sindhi feels that her principal problem is lack of nutrition.  She is not healing as she would if she were well nourished.  He understands that the new intestine is absorbing little (tho otherwise doing fine, no rejection) and is simply passing through most of what enters.  He reduced the tube nutrition into the intestine from 75 ml per hour to  10 which is enough to nurture the intestine itself.  He put Karis back on TPN, wanting her to have 110 to 120% of what she needs, since she is under nourished.  His second major strategy is to see high levels of oxygen in the blood.  If she is well nourished and has healthy blood, he believes the other problems will resolve themselves.  The kidneys were a little better today, but “in compensation” Karis had higher and more continuous fevers today than any other day since her transplant.  She didn’t have the energy to get out of bed to sit in the chair today.

Pray that this would be just a bad day and not a real change to something worse.

Monday, Jan. 30, 2006, 6 p.m.
(Debbie)  It is such a delight to walk into the ICU and be welcomed by a wave from across the room even before we're close enough to see Karis' smile!  She seems so much at peace, without the panicky anxiety that characterized her waking up from her comas a year ago.  When I got there this morning, Karis had recently been switched from the BiPAP to the nasal cannula, so we were able to talk, and try to fill in some of the gaps for Karis, who doesn't remember any of the last two weeks.  She did have some vivid dreams that she thinks really happened, and we're still sorting those out.  For example, she asked me this morning whether Claire is still here.  Karis is quite sure that her cousin Claire was here and spent time by her bed talking with her, and was disappointed to learn that wasn't true.  (David and I think she may have incorporated into her dreams the visits of a friend named Audrey, who is blonde, sweet, and friendly like Claire is.)  Karis knew that Valerie is back in Brazil, but thought Dan and Rachel should still be here.  That was indeed the case two weeks ago when Karis gradually got more confused and then went to sleep.

Later in the morning, when her breathing became labored Karis had to go back on the BiPAP, which made further conversation more difficult.  She also spiked another fever, but was able to take a nap once Tylenol and the BiPAP (bumped up to 60% oxygen when her blood oxygen level came back lower than desired) made her more comfortable.  When I left, they were talking about another trial on the nasal cannula, which will allow her to converse with her dad, and getting out of bed into a chair for a little while.  Karis' main observation about herself is that she feels exhausted.  She received another unit of blood today, which should help with both the breathing and the weariness, but we know that recovering from this surgery will require a lot of patience and taking things slowly.  The doctor advised her this morning to do what she can, but not try to push herself, because her body genuinely needs rest.

We want to share two e-mails with you.  The first, from my sister-in-law Elaine describing an experience of Elaine's sister Bev, encourages us in regard to the process Karis is going through mentally.  We thought it might encourage you as well, especially those of you who knew Bev as the delightful, creative, gifted person she was.  The huge steps forward that Karis has made in the last couple of days give us confidence that gradually she will be fully restored and able to start life all over again, including return to college.  Here's what Elaine wrote:

In a strange way Karis' situation reminds me of when Bev came out of her coma when she was 18.  Mom and Dad said that she was like an infant at first, tried to get out of the room, cried, fussed, etc.  Slowly started to connect.  Even when she came home she didn't speak very much--didn't recognize her violin--made strange noises that frightened the younger siblings.  The lack of memory of her violin devastated my mother who was very proud of what an accomplished violinist she was.  Slowly she started to regain language--and as she did, she started to regain memories.  My sibs were told to play cards with her to help her memory return, and they (somewhat reluctantly) played hours and hours of card games!   But by the time I got there at Christmas--only a month later--she came across well, but as though she were about 11 or 12. 
Within a short time, she was herself, went to college the next year, and people who didn't know the story would have been very very hard pressed to know anything had ever happened.

The second e-mail is from a friend who has walked with God through many years and many tough experiences in her own family.  We share it so that you can discern for yourself whether God is leading you to fast in some way.  Mary Lou writes:

"In the middle of last night I woke up and heard Fast for Karis .  The sense was not urgent, but more that as someone denies himself food, Karis will be absorbing or gaining more food.  I didn t think this was for me personally, nor do I think it's for you and David, but maybe for anyone who feels led to do this.  No other details on how long, or what to fast from.  I submit this to you for your discernment; I just want to be obedient to anything that might be from the Lord . . .  It may be the kind of fast that as I restrict myself from something (to break its power in my life and give more room for God),  there is more freedom.  And somehow in a heavenly transaction, this can be applied toward Karis (who actually is part of me, since we are in the same Body)."

Our heartfelt thanks to each one who is following this long road with us and helping to pray Karis through to all that God has planned for her life.

Sunday, January 29, 2006, 10 p.m.
(David)  This is the day!  “The Lord has done this, and it is marvelous in our eyes.  This is the day the Lord has made; let us rejoice and be glad in it.”  Or in the words of Eugene Peterson in the Message “This is God’s work. We rub our eyes­we can hardly believe it!  This is the very day God acted­let’s celebrate and be festive!” (Ps 118.23, 24).  This is the day that Karis came back to us!  Still not herself this morning, she took a good nap at the end of the morning on the bipap ventilator and then woke up in every sense of the word.  She's lucid, present, reads, speaks rationally (even though sometimes the words run together, making it a little hard to understand), recognizes people (present and not present), is interested in watching a movie on TV, wants to know what she looks like and in moving to sit up in a chair for 45 minutes was able to bear her own weight on her own two legs.  Before waking up this afternoon, she hadn’t managed to do any of those things!  What a radical change! 
Her kidney numbers are a bit better, about 10%.  But the mental change is 100%; it’s as if she just woke up from a nap without even knowing she’s slept so long.  She tought Dan was still here, because he was here when she lost her ability to reason normally two weeks ago
 
She stayed on the nasal canula for the two and a half hours she was doing well, but became exausted and at the end of the afternoon, had to go back on the bipap ventilator.  She tried to get off the bipap tonight to talk with a close friend of hers, but had to go back on the bipap because she was losing her breath.
 
Deb and I went out for dinner (Mad Mex!) tonight to celebrate.  For the first time we began to think about some possible scenarios regarding our future.  It’s too early to make firm plans, but this night marks a change in our mentality also.  :)

Saturday, January 28, 2006, 10 p.m.
(David)  Today was a good day; everything stayed stable, few changes.  I read four Psalms to her.  Karis gave everyone who came near her a big smile and called Debbie “Mom” consistently.  (We won’t count the time she called me “Mom” or carried on a conversation with the ventilator calling it “Mom”).  Kidneys stopped getting worse, and one of the two main numbers improved a little.  Intestines are doing great with no signs of rejection.  No fever today.  They took a lot of large clots of blood out of the hematoma and intend to do the same again tomorrow. 
It was really fun to go to the evening service at Ascesion together and join in the fellowship supper afterwards.
We had a good time talking with Rachel on the phone; she's having a great time at Wheaton; trying to figure out if she can visit Brasil in June to be at Valerie's graduation.

Friday, Jan. 27, 2006, 8:15 p.m.
(Debbie) Belated Happy Birthday to my nephew Brent yesterday, and I'm sure you are all celebrating today Mozart's 250th birthday. :)

Karis was awake all day, until late afternoon, though only marginally "with us." The glimpses she gives us of returning rationality make us eager for more. One such glimpse came after 45 minutes of sitting up in a chair, during which time she said quite a bit, but nothing I could make sense of. All of a sudden, though, after dozing for awhile, she started trying to push aside all of her lines and drains and made a valiant effort to stand up. When I asked where she was going, she said very clearly, "I want to sit in that bed over there" (pointing to her bed). The other clear statement she made in my hearing today was in response to a nurse asking how she was. She said, "I'm exhausted."

The ICU, Transplant, Infectious Disease, and Renal doctors are trying to find a good balance in several directions at once (note that the Pain Team and Neuro docs are no longer on the list--hurrah!! Neuro finished all their exams and pronounced her "normal, just slow, as if sedated"; she's no longer on any pain meds, tho she receives Tylenol for periodic fevers):
1. Enough Prograf (FK) to prevent rejection, but not so much that it's hurting her kidneys 2. Enough antibiotics to fight the infection in her incision, but not so much that they're hurting her kidneys.
3. Enough fluid to help her kidneys function, but not so much that more fluid gets into her lungs 4. The right balance of all the different electrolytes, and a low enough level of protein in her J-tube formula to be easier on her kidneys, while still providing enough nutrition for healing.
5. Enough time on the high-flow nasal cannula to exercise her and build up her ability to breathe on her own, without exhausting her and compromising the level of oxygen in her blood. Enough time on the BiPAP to keep her lungs inflated, since the lower lobes tend to collapse while on the cannula.
6. Enough intervention with her incision to clear out the hematoma on the right side and fluid collected on the left side, without introducing more infection or causing more damage to her tummy. (At present, there's a several-inch-wide gaping wound on her right side and a smaller one on her
left.)

What's keeping Karis in ICU:
1. Respiratory status
2. Compromised kidney function
3. "Clouded sensorium" (how's that for a way to say she's not self-aware enough to ask for help if she needs it, and therefore still requires more nursing vigilance than is possible on the floor!)

In all other ways, she's stable enough to move upstairs out of the hectic ICU environment--but the doctors keep warning us that conquering those three problems may be a long process. We're so happy that she's being fed entirely by her new intestine (through the J-tube)--no more TPN!!! And the biopsies made yesterday show no signs of rejection!!!!

Thursday, January 26, 2006, 10:00 p.m.
(David)  Today was Karis’s best day in the last ten days!  She was awake and talking the better part of the morning, the afternoon and the evening (even though we couldn’t understand most of what she said).  Sometimes we understood a word, phrase or even a short sentence.  She’s clearly much better.  Apparently methadone and similar narcotics clear out of the body well before they clear out of the brain, which may be part of the explanation.  She’s breathing a little better also.  No fever all day.  :)

The only major concern at the moment is her kidneys that worsened considerably today, but not enough to cause alarm yet.  She is up by a liter on her input/output, not managing to urinate as much as she needs to.  They gave her more fluids to help her kidneys function better, but it didn’t seem to work that well.  More fluids are good for the kidneys, bad for the lungs (which have fluid in them), so it’s quite a tight rope. 

Wednesday, January 25, 2006
9:00 p.m.
(David)  The EEG showed that Karis’s brain waves are normal, but appear heavily sedated.  The docs say we’re probably in for a pretty long wait before she wakes up.  TPN was discontinued.  :)  No real side effects so far from discontinuing the methadone.  :)

2:00 p.m.
(David)  Karis was wide-awake most of the morning, the same way as yesterday: eyes wide open, talking but without making sense and no evidence that she recognizes anyone.  Basic changes are:
1.      Difficulty breathing.  She’s on the bipap ventilator (through a mask on her face) and even so breathing 50 times a minute with heartbeat of 140 a minute.  Pray that she improves so she doesn’t have to go back on the normal ventilator with a tube down her throat. 
2.      The CT scan didn’t indicate any problems.  She continues with a hematoma in her abdomen, but they’re just going to keep that under observation and not mess with it.
3.      They did an EEG this morning; no results yet.
4.      Transplant friends: three friends from the 7N transplant floor came down to the ICU today with difficulties.  We met a new friend, Amy, 21, who had a liver transplant the day before yesterday.  Her family is Christian and her mom and sister stayed at our place (and Battle and Carol’s place) lst night, her dad staying with Amy and sleeping at the hospital.  She went back into surgery this morning and is back in the ICU again.  Yesterday, I had the privilege of giving Arthur, a 4-year-old Brazilian who had a liver transplant 4 months ago, to physical therapy along with his Dad.  Today, Carissa (26 years old, waiting 18 months or so for a similar transplant as Karis’s) came in her wheelchair with her Mom, Sharon, to visit Karis.

Tuesday, January 24, 2006, 9 p.m.
(David)  Karis was wide awake for several hours this afternoon, talking without us being able to understand her, but at least she was talking!  It’s still not clear that she recognizes us.
 
Her intestines are doing very well, absorbing 65 ml an hour with the parenteral nutrition adding another 10 ml per hour.  Tomorrow night, if all continues as it has been, Karis will be without TPN for the first time in fifteen months!  Alleluia!
 
They discontinued the methadone today.  We’ll see whether she has any withdrawal symptoms, but the docs don’t feel that it was making much difference.  If she doesn’t have withdrawal (after a year of heavy doses), that will be a miracle and another great victory!  :)
She continues to alternate between the bipap and he nasal cannula for breathing.
 
Her kidneys continue with difficulty; kidney specialists are beginning to accompany her.  One of her antibiotics was stopped today which will help the kidneys.  The FK, medicine against rejection, has been high and that hurts the kidneys too.  So they’re working to get it where they want it and keep it from oscillating.
 
The fever continues to come and go; they did a CT scan of the area of her abdomen that has bled on and off to see if they discover an infection related to that.

Summarizing, with the exception of the kidneys, and the fever that comes and goes, everything’s getting better.

Monday, Jan 23, 2006, 9:00 p.m.
(David)  Karis was really wide-awake for about 2-3 minutes today and sleepily awake for about half an hour.  Final reading on MRI shows no problems.  Did a spinal tap that showed she has high pressure (31 mm), but not so high as to worry the doctors.  Normal is apparently up to about 10 or maybe 15.  Her nurse today has worked a lot on the adult transplant side and said that it is really common for adults to spend a week or two sleeping like Karis is.  Then they just gradually wake up and return to normal.  Both the nurse and our transplant doctor said we shouldn’t worry about what’s happening for another week.  So patience is the name of the game.  Meanwhile the ICU doctors are making a point of ruling out anything they can think of that could be wrong.  So far, nothing real abnormal has shown up.
She’s still on bipap most of the time; kidneys still having some problems.  Otherwise everything’s fine!  J

Sunday, Jan 22, 2006
10:30 p.m.
(David)  Karis was really wide-awake for about an hour late this afternoon.  Eyes wide open, though not seeing clearly; sometimes seeing something; sometimes hearing something.  Loved eating ice chips.  Communicated clearly that she wanted to sit up in bed, reaching both arms out to the nurse to help pull her up in her bed.  Occasional specific responses to things we said.  Occasional possible words, a little like when a baby starts moving from noises to its first words. 

The MRI showed some possible problems on the right side of the brain, so they did a more careful MRI of that side.  Initial results show there’s nothing seriously wrong, but a specialist will do the final reading tomorrow morning.

When we dropped in on her after the Brazil night (which went very well), she was sleeping and out of it, with the bipap ventilator on again.  She rests more easily with that on since it helps her breathe and she doesn’t have to work so hard.

We’re very grateful to our many Ascension friends who contributed to making the Brazil night a special time, helping before, during and/or after the meal.  (The Steelers won and are going to the Super Bowl – so that added to the festive spirit!)

8:30 a.m.
(David) Continuing yesterdays’ summary format
1.      Neurological status: did an MRI, but don’t have the results yet.  Called into ICU this morning and they said Karis is beginning to truly wake up.  She clearly hears, is beginning to say a word or two (she said “hi” to me over the phone), follows people with her eyes and seems exhausted.  Methadone was moved from 6 ml to 4 ml a day, given now at 2 ml every twelve hours.  This may be contributing to her waking up after five straight days of sleeping. 

2.      Her lungs: holding steady, she’s on the high intensity nasal canulla with 8 liters a minute and 80% oxygen.  Her nostrils are bleeding from so much of this.  Hopefully they can cut it back or move her soon to a normal nasal oxygen line that isn’t high intensity

3.      Fever has come back.  38.4 centigrade (101 fahrenheit).  Could be an expression of withdrawal rather than of infection. 

4.      Kidneys: numbers indicate more stress on kidneys each of the last four days.  This is a growing concern.  Input/output of fluids during the night was about even.

5.      Protection of her mind, soul, and spirit during this time when we can't "reach" her.  Simply pray that she keep waking up and we’ll be able to communicate again. 

6.      New organs: doing real well.  No rejection.  Intestine’s happy!  J-tube feedings are up to 40 ccs per hour; they may begin to cut back a little on the TPN sometime soon.

Saturday, January 21, 2006, 12:30 p.m.
(David) Following up on Deb’s summary from yesterday:
1.      Neurological status: ICU docs want to do an MRI since Karis is into her fifth day without waking up; transplant has asked not to move her since she’s bleeding again out of the right side of her incision.  So we’ll wait for now.  Methadone that was at 48 ml before and after the transplant is now down to 6 ml a day!  No signs of withdrawal so far.  PTL!
2.      Her lungs: improving a little.  She didn’t go back to the Bipap machine last night; stayed on the nasal canulla.  Numbers are a little iffey, but she’s holding her own with less effort than yesterday.
3.      Fever: gone!  YEA!  Whoopee!  With her immune system repressed, it’s wonderful that she doesn’t have to fight a fever.  She still has an infection of her incision, but it’s looking better also.
4.      Kidneys: numbers indicate stress on kidneys.  Good output of 600 ml through the night.
5.      Protection of her mind, soul, and spirit during this time when we can't "reach" her.  Let’s keep praying, remembering that she had awful nightmares in the induced comas 13 and 14 months ago.

Fri., Jan. 20, 2006, 10:30 p.m.
(Debbie) Karis opened her eyes a few times today, but there wasn't any clear indication that she recognized us. She didn't say anything, though she mumbled a little bit. At 4:00 p.m., since her blood gases were good, they took her off the BiPAP and put her on a high-flow nasal cannula, which she was still on when we left the hospital a few minutes ago. It was so lovely to be able to see her whole face! She was working pretty hard to breathe most of that time, though eased a little when the oxygen was put up to 70% at 11 1/2 liters. They said they might put her back on the BiPAP so that she can rest more easily during the night.

The biggest concern is that she spiked a fever again this evening, higher this time. The doctors have been concerned that an infection might develop underneath the infected incision and necrotic area, so this fever is worrisome, especially with all the antibiotics she's already taking.

Good news is that her second scope and biopsy showed no signs of rejection, and she is tolerating so far an increase in J-tube feeds of 5 ml's every 12 hours (she's now at 25 ml; goal is 75). When she reaches the goal, they'll start cutting back on her TPN--we don't want to damage her new liver!

To summarize, as David would say, please pray for:
1. Her neurological status, since we don't understand why she's acting sedated without taking sedatives.
2. Her lungs
3. Whatever is causing this fever, and for healing of her tummy, both inside and out.
4. Good kidney function
5. Protection of her mind, soul, and spirit during this time when we can't "reach" her.
Thanks so much!

Thurs., Jan. 19, 2006
10 p.m.
(Debbie) I just walked home from the hospital (about 40 min.); very refreshing after being in the ICU all day. (David is there now.) It was a quiet day for me--from what I could tell, Karis was sleeping peacefully, but I don't know what was going on in whatever world she's in. She certainly didn't want to join ours. Dr. Mazariegos cancelled the MRI scheduled for today. He didn't want Karis to be moved, since her incision looks pretty awful (to me anyway!) with an area of necrotic tissue in the center. She had some fever this morning, which the docs think is related to her infected incision. The fever was gone by the end of the day. She's on three antibiotics and two antifungals, so something should be working! Tomorrow they're planning to do a trial of taking Karis off the BiPAP and see how she handles being back on a high-flow nasal cannula. It will be amazing to be able to see her face again!

8 a.m.
(Debbie) Karis has been largely unresponsive the last couple of days. It's really hard to see her this way. When she does open her eyes, there's no indication that she recognizes us. She did say "Ouch, ouch, stop!" when her JP drains were pulled out of her tummy yesterday--that was the highlight of the day as far as communication from Karis. From time to time she also makes valiant efforts to pull the awful BiPAP mask off her face, which is a very intelligent response. She was on 50% oxygen all day yesterday, not able to go lower than that. Maybe when she starts waking up a bit more she'll breathe better and be able to go back to the high-flow nasal cannula. Neurology evaluation is underway, with no clear answers yet. An MRI is scheduled for today.

The nurses continue with their efforts to balance her fluids, and had a little more success yesterday, although she's still quite positive overall.

Good things that happened were the pulling of the drains and the NG tube, and beginning feeding of her new intestine through the J-tube at 5 ml per hour. If she tolerated that through the night they'll increase it today to 10 ml/hour. It's not enough to nourish her, but does nourish the intestine itself. Her liver function and pancreas numbers continue to please the doctors.

Wednesday, January 18, 7:30 a.m.
(David) Real quiet night; Karis slept like a baby.  No bleeding; intestine functioning. Oxygen is down from 50% to 45%; fluid intake/output down by 250 ml (a cup).  Not a lot, but much better than going up as had happened on all the three previous eight-hour segments.  It’s really hard to get her fluids down because of all the meds and TNP that have to go into her.  If all continues well, they’ll do a first experimental “feeding” of the intestine by putting in 5 ccs an hour through her j tube (jejunum).
 
Emily, a good friend of Karis’s, is staying with her this morning while Deb shops for a dinner of 100 people we’ll be doing Sunday evening for a Brazil night at our church, Ascension and I work at home.  Deb’s got a half dozen people helping her on Saturday afternoon and another half dozen on Sunday afternoon, so the Brazil night we scheduled to share about our ministry in Brazil is still a go.  (Moved to 7 p.m. due to the Steelers’ game at 3 p.m. EST).

Tuesday, Jan. 17, 2006,
2 p.m.
(Debbie) The bleeding in her abdomen seems to be under control, although CT scan shows a hematoma (collection of blood) in her right lower abdomen. The surgeons feel that they have to let this resolve itself, because her incision is held together only by skin and they don't want to risk infection by opening it to drain the blood out. Karis won't be getting out of bed today. Blood thinners have been stopped, so it is hoped that her own body will deal with this situation.

Meanwhile, the good news is that the transplanted intestine looked wonderful when she had her first scope and biopsy today (this will be repeated weekly to catch early any signs of rejection). After the initial action yesterday, the intestine hasn't put out any more, but it seems to be healthy, as do all of the transplanted organs.

Karis has been out of touch with reality. It's pretty freaky seeing her that way, but the consensus is that a good part of it is due to not getting much sleep since her surgery a week ago. I don't know whether anyone mentioned that Sunday night Karis was moved out into a large room with ten beds, because someone else needed the private room she had been in. The large room is very noisy and active day and night, so all that doesn't help, but even in the private room she was having trouble sleeping because of pain and all of the interventions done every few minutes all day and night. We're looking forward to seeing our Karis come back to us. This one is very sweet and docile, agreeing with everything, smiling whenever someone smiles at her, but incapable of responding to simple questions and saying things that don't make any sense. The ICU doctor asked her about 2:30 this morning where she was. She looked around her and said "Ascension basement." We've had to be vigilant to prevent her pulling out lines and tubes--she actually did pull out one IV, and getting another one in was quite a challenge.

Please don't let this situation prevent you from writing Karis e-mails. Eventually she will be delighted to read them and know that you were thinking of her and what's happening in your life.

Bottom line:
--respiratory status is improving on the BiPAP as Karis' lungs dry out --fluid status is gradually coming back to normal as Karis' kidneys function better --her abdomen, which seems to be as distended as it can possibly be, should relax and become more comfortable as the fluid is reabsorbed and excreted --the new organs seem to be fine!
--as her body gets into better shape and she's able to sleep more, we expect her mind to catch up too --this is a "bump in the road" that is on the way to resolution.

Rachel has returned to college. Dan got on the train to DC in the wee hours of Monday morning. It was a huge help to have them here, and we're grateful that they were able to give us and Karis this time. Now David and I will try to keep ourselves in decent enough shape to be able to be some good to Karis as we walk with her through these challenging days and nights. Thank you once again for your kindness and concern for us.

9:00AM
(Rachel) Karis has been facing various challenges throughout the evening and night. The blood loss and fluid leaks through her incisions that my dad referred to rather briefly last night began around 8:30PM, and continued for a significant amount of time before calming down some. Karis has had to receive three units of blood throughout the night. The doctors think a lot of the problems may be caused by problems with Karis' kidneys, since she was not urinating well throughout the night despite being pumped full of liquids.
They gave her a med called diaryll that has helped signicantly, and has been made part of her regular treatment. However, it is still problematic that she cannot urinate without it. She was already receiving lasix. The lack of urination is what most likely led to the incredible ouput of fluids (known as
ascites) through her incision sutures. It may have also contributed to the third spacing (weakness in the walls of her veins and arteries that causes them to leak into the rest of the body. One of the major symptoms is a major drop in blood pressure), which contributed to the bleeding out of the right side of her suture. Another result of this whole ordeal has been that her lungs have gotten wet again, leading to a new set of respiratory difficulties. At the moment she's on what's called a BiPAP machine, which forces air into her lungs. It involves a large mask over her face which is very uncomfortable, but is a much-needed attempt to keep her off the ventilator. Prayer requests would be especially that her kidneys would start functioning well again, and for recuperation of what was lost in her breathing capacity. The Lord has seen us through many bumps in the road, and we trust that he will see us through another. Thanks so much for your love and support!

Monday, January 16, 2006

10 p.m.
(David) What a day!  Karis has bleeding in her abdomen, pressure fell dramatically, but they got a new IV line in her foot, gave two units of blood and she’s stable.  She also is leaking fluids through her incision sutures since she’s third-spacing fluid out of her veins or arteries and the two drainage pouches aren’t handling it.  They still have to resolve that.  Karis doesn’t even really know what’s going on, but she’s a little less dopey, watching TV, keeping her eyes open and occasionally saying some words that might make sense.
Deb is sleeping at the hospital tonight since I was there last night.  The adventure continues! Exactly one week from when we first heard there were organs available that could be good!

5:30 p.m.
(David) Thank You, Lord!  Updating the four areas I have an additional area to add: Karis’s intestine is functioning!  She is passing the feces through her ileostomy and her gastric-nasal tube is hardly putting out anything any more!  Ohhh, glory!  It’s like getting a late Christmas present, one of the biggest we’ve ever had in our whole lives.  (Maybe this is a good time to comment that the diameter of her new ileostomy is about half an inch, less than half the size of the ileostomy that she had two years ago.  If it’s possible to talk about something like that as beautiful, this certainly is!
Returning to the four areas of interest:
1.      Pain – they’re cutting back on the methadone again, now from 24 to 16 ml per day.  Karis is loopy, without pain and not able to communicate rationally or normally.  She doesn’t even perceive our immense happiness about her intestine functioning though she smiles at our happiness.  Keep praying that we can find the minimum level she needs as soon as possible.
2.      Oxygen: they’ve kept her on 8 liters a minute, but cut back slowly form 100% to 50% and Karis’s numbers are all getting better!  How wonderful!  This greatly encourages us in terms of less risk of pneumonia. 
3.      Sitting in a chair.  She sat up for 135 minutes (and 23 seconds – hihi!)  Doubtless this has helped her lungs to function better and reduce the dependency on oxygen.  (Did you know that the #1 killer after all surgeries, not just transplants, is pneumonia?)
4.      Infections: everything’s under control, no fever.  Yes!

12:00 noon
(David) We made four prayer requests; here are the initial answers. 
1.      Pain – it’s impossible to imagine a more dramatic positive turnaround!  The docs are still going down on the methadone as fast as possible.  She was taking 45-48 mg a day before the surgery, which they continued afterwards, allowing her to have even more on one of the days.  In the last two days they brought it down to 24 mg a day and today they are experimenting with 16.  Karis is doped up and not connecting with reality.  We understand that this is because her new liver is functioning so well and making the methadone function as it should instead of filtering or blocking it or getting saturated as did the old liver
New request: that we might be successful in diminishing the methadone as much as possible without going into withdrawal and that Karis would have a clear mind and talk normally. 
2.      Oxygen: they increased the oxygen from 6 to 8 liters a minute and from 80% to 100%; the problem of too much CO2 was resolved, but they still need to solve the lack of oxygen in the blood.  The increases they made didn’t help, so they’re going to wean back down and see if she just stays where she is.  Karis also has fluids in her lower lungs.
New request: continuing praying that her dependency on extra oxygen would diminish and that her lungs would “dry up”, not turning into pneumonia, which would be a major crises. 
3.      Sitting in a chair.  She sat for 90 minutes yesterday!  Alleluia!  She sat up in bed today (and yesterday), but didn’t want to get out of bed this morning, feeling very weak and unsure of herself.  Hopefully she’ll get out this afternoon.
4.      Secondary infections (on her skin or other places, but not in her blood); it looks like everything’s under control.  Pray that she not get any infection in her blood (her temp was high normal this morning).

Sunday, January 15, 2006, 8:30 a.m.
(David) Karis had a rough day yesterday because of pain.  For the first time I heard her say she had reached level 10 of pain (on a scale of 0 to 10) and after intervention, stayed at nine for a long time.  She was very dopey and sleepy because of the medication.  The problem is that methadone, which is the basis for treating her pain, makes her breath more slowly and makes her intestines function more slowly.  There is a different pain med that wouldn’t have those side effects, but would have other ones.  The doctors are trying to figure out what to do.  Pray that they can resolve this.  Karis had Rachel (who had night duty) call at 1:30 a.m. as she was crying, groaning and in general not handling the pain.  The methadone rhythm had been changed and there was a window in which she didn’t have enough coverage.  They resolved that and this morning Karis has a level 6 of pain, which is less than anything in the last 24 hours, if not since the transplant.  It will almost undoubtedly go up soon.
 
When Deb helped Karis have a bath this morning, she counted the number of tubes, catheters and lines going into her body: a total of 19.  Whewee!  And this is after removing two tubes related to the ventilator! 
 
Four goals for today (and prayer requests):
1.      Administer the pain so it doesn’t get out of control.  In general, it’s worth dealing with a little more pain than we’d like in order to resolve the respiratory problems and help the intestines to begin functioning.  But it’s not worth losing control.  Karis has tolerated so much pain for so long that she has a very high capacity for pain.  We seem to be going beyond her limits, principally because her body has become used to high levels of narcotics, so that normal levels of pain medication aren’t adequate for her.
2.      Diminish the dependency on oxygen.  Karis’s lungs aren’t doing real well.  She’s using a new machine that didn’t exist a year ago which gives her 80% pure oxygen under high pressure (6 liters a minute) through a nasal tube.  If it weren’t for that, she’d still be on the ventilator. 
3.      Karis sit up in a chair beside her bed.  Moving stimulates the lungs and helps prevent pneumonia.
4.      Resolve cellulitis, a skin infection that leaves her tummy reddish.  The doctors aren’t worried about that (to my surprise since her immune system is repressed), and are treating it with antibiotics.  Her tummy is really distended, but the docs say that’s normal at this point in recovery. 

Saturday, Jan. 14, 2006

1 p.m. EST
(Dan) Karis got off the ventilator today at about 1pm, which is a big step forward for her comfort-wise (she doesn't have a big tube down her throat anymore, and can talk as soon as she gets her voice back).

11 a.m. EST
(Rachel) Karis is doing well! I arrived yesterday from Wheaton for the long weekend (Monday is Martin Luther King, Jr. Day, and Tuesday I don't have class until 7 pm, so I head back to Wheaton Tues. afternoon), and it was wonderful to see Karis. She still has the respirator in her mouth, so she can't talk, but she was quite communicative through hand gestures, mouthing words, and writing. What a difference from last time she was in ICU with a respirator in her mouth (about a year ago), when she was too weak to move hardly at all, even enough to write! Now she can clearly let the nurse know what she wants or needs, and interact with us in a variety of ways. It's so exciting!

The doctors were hoping to get the respirator out this morning, but found some fluid in Karis' lungs. My mom says its just a result of having a lot of fluid in her body in general, and they're giving her lasix to try to get rid of it fairly quickly. They still hope to get the respirator out later this afternoon if all goes well. Getting the respirator out is today's prayer focus.

Friday, January 13, 2006

1:00 p.m. EST
(David) Karis is sleeping well this morning after not being able to sleep well since her surgery.  Since she’s been on heavy narcotics for 14 months, the narcotics they’re giving her now are not having a lot of effect.  One of the surgeons from the transplant team said that he doesn’t remember seeing anyone with so much narcotics who still has so much pain.  The negative effect of this is that she still isn’t off the ventilator, since she hasn’t been able to stay awake enough to breath well in the several hours of tests they’ve done each day (or twice a day).  It’s a strange tension of not being awake enough to breath well and not being asleep enough to sleep well.  She’s half asleep, half awake most of the time without the full benefit of either state.  She’ll try breathing on her own again this afternoon.  Pray that Karis could get off the respirator since once of the side-effects is that it makes it more vulnerable to pneumonia.  The two pneumonias she had 14 months ago each required a 30-day induced coma to overcome.  Her lungs were damaged in those experiences and we’d like to avoid getting anywhere close to repeating them again! 

12:15 am EST
(Jan) Debbie called again saying the 4 transplant doctors had just come out of the treatment room smiling!! The lack of bloodflow to the liver had been detected on an ultrasound--one that had been repeated 3 times by 3 different technicians with the same results--rather than by actual signs of distress in Karis. All four doctors had come in at night to be ready for surgery, but the angiogram/arteriogram was totally conclusive that Karis is fine! Organs, bloodflow, oxygen...Karis continues to do well.

No one there can explain why the ultrasound behaved as it did. I told Debbie this scare reminds me to keep praying; to not take anything for granted just because things have gone so well. Valerie was able to leave for Brazil as planned, after last-minute concern that she should be pulled back off the plane. Dave, Dan and Debbie are there, and Rachel arrives tomorrow for the long weekend. Another occasion for rejoicing together at God's goodness!

Thank you to each one who was aware of the concern and joined us in prayer. May God encourage your own hearts with His love.

Thurs., Jan. 12, 2006

9:30pm EST
(Jan) Debbie just called with much concern. Karis has a blood clot in the hepatic artery (which carries blood to the liver), but they don't know exactly where. They have OR space reserved, but will try doing an arteriogram first, with the intent of finding and dissolving the clot without surgery. If unsuccessful, they will open her to do a direct ultrasound on the artery and remove it surgically. If that is unsuccessful, the risk is losing her graft (the transplanted organs) and her life. The liver is one of the organs recently implanted and is necessary for survival--different from the intestines, there is no known way to live even a day without it.

God has certainly shown Himself merciful and powerful in her life again this week, and He is able!! Please join us in urgent prayer. Thanks so much!

3 p.m.
(Debbie) I don't have time to write much now because I have to take Valerie to the airport, but just wanted to let you know that Karis is doing well. She's doing another trial on the T-piece right now to see whether she can get off the ventilator. Up until now, she's gotten too tired breathing on her own for very long, so we'll see how it goes. Her main issue is pain. Today she wanted to try to sit up, but that idea was vetoed until at least tomorrow. She's moving around in bed a little more easily though.

Time to run to the airport! Love to all, and thanks again for all your prayers and support.

(David) Just an added note.  I stayed here in the hospital library translating today's and yesterday's updates into Portuguese and then going back to be with Karis while Deb took Val to the airport.  I slept overnight last night with Karis at her request.  I was up till about 2:30 a.m. what with one thing and another, when she finally got enough pain medicine to drift off. A little before 7 a.m. we had devotions together before I left to reschedule the flights I had schedules earlier to go visit my folks in Florida and then Dan in Washington D.C. in these next six days; Lord-willing, I'll do that in February. As best as we understand things now, Deb will not be going on our tentatively scheduled trip to be with Val in February in Brazil.  The first 6-8 weeks after transplant are the highest risk time and Deb and I plan to be here together for that (except for a week in February when I'll visit my folks and Dan).  I'll head back to Brazil, Lord-willing, at the beginning of March.

God has blessed beyond what we could imagine in 1000 ways and one of them is that Karis has not had, thus far, any recurrence of the horrible nightmares she had in the induced coma a year ago.  Alleluia!  She has advanced in less than two days more than she did in several weeks coming out of the induced coma.  It's a miracle to watch her progress so rapidly.  :)

Wednesday, Jan 11, 2006

Tuesday, Jan 10th, 2006
11pm
(Jan) Debbie just called from the hospital. Surgery continues to go VERY well. The doctors are starting vascular hookup and they expect another 2-3 hours surgery will take care of it (finishing around 2am EST, Lord willing). Then it's straight to ICU for another hour before the family can see her, then Debbie plans to get some sleep! Family decisions (Dave's planned trip to FL/DC, Valerie's return to Brazil Thurs for a missions trip, etc) will come after that. What a blessing that Val and Dave were on hand, that Dan was on his way, and that Rachel has a long weekend from school to join them.

Let's pray for a peaceful, even refreshing couple days for Karis while in the induced coma. And that her body will practice true Christian hospitality :-) with these new organs and make them feel right at home!

8:45 p.m.
(David) The organs are all inside Karis.  They were brought on ice so they had to heat Karis up after putting the new organs in her!  Another three hours to wrap up the details such as three holes in her abdomen for an ileostomy, gastrostomy and jejunostomy.  The latter two will be closed up when they’re no longer necessary down the road.  All is going very well.  Alleluia!

5:30 p.m.
(David) Karis is doing very well in the middle of the surgery; they think it will be six more hours.  I was overly optimistic when I said earlier that the total surgery would be about six hours.  A total of four surgeons are involved, one of them harvesting the organs in the hospital beside us.  Never in the history of this team has there been a donor in the same city.  The surgeons have taken out all of Karis’s organs (stomach, pancreas, the little part of duodenum that remained and lastly, the liver; they’ll be cleaning Karis’s insides up for about half an hour and then be ready to put in the new organs.  It took a little longer because they’ve had to deal with a lot of adhesions and scar tissue. 
 
The surgeons are happy; all four of them went next door and examined the donor organs and agreed that they are excellent for Karis.  The surgeons are timing things so that the organs will leave the donor next door approximately when Karis is ready to receive them.  They say it will be the shortest out-of-body period for organs they’ve ever experienced.  After so many problems in the past months and years, it seems that everything is going better than we could have hoped for, including Valerie and I being here from the beginning of the transplant call. 
 
Dan is on a train and will arrive around midnight; Rachel will arrive Friday evening and stay until Tuesday.  Karis will be in an induced coma for about two days, maybe a little more, maybe a little less.  Let’s pray specifically that she won’t have any nightmares such as the terrible ones that plagued her in the induced comas of November and December of 2004.
 
We continue to be super grateful, rejoicing and sensing great confidence that God is in control.  The pastor of our church here (Ascension) and a good number of other members have visited during the day; we’ve talked with quite a few other friends by phone both in Brazil and here.  We feel super supported.  I went and got my flu vaccination; Deb already had hers.  We’ll need to protect Karis carefully after the surgery when her immune system will again be repressed. 
 
In sum, everything is going very well.  We’re working on a 1000 piece puzzle in the surgical waiting room with the help of another family who is also waiting for news on the heart surgery of their 13 year old son/brother/cousin.  God is good!

2:20 p.m.
Karis went into OR, all smiles, at 12:15 p.m. Intubation and preparatory work were completed and the first incision made at 2:00 p.m. Karis is stable and doing well.

10:00 a.m.
(David) Transplant is happening!  We got a call at 11 p.m. last night and began get excited.  Did some dancing in the room even though we remembered that the first transplant calls were aborted four times before the fifth time worked.  So we didn't tell anyone yet, but now it's been confirmed that it's a go!
Big time excitement!
Pray that the organs work perfectly, the surgeons do everything right and that there will be little or no rejection.  Her infection is being treated by antibiotics, not by her immune system, so the fact that her immune system will be repressed is not going to affect the treatment of the infection.
My year verses for 2006 are Is 40.1-5; Is 35 and Is 41.17-20 -- all speaking about being in the desert, but the desert changing dramatically.  Enjoy praying through those verses as you pray for us.  The surgery should take about six hours once they start.  This is much shorter than usual since they have no intestine to take out.
Karis is as excited as can be.  We all are!
Alleluia!

Sunday, January 8, 2006, 11 p.m.
(David) I slept last night at the hospital with Karis, going to church in the morning while Deb stayed with Karis.  After church, Rachel finished packing, we fixed lunch at home and took it to the hospital where we ate together before saying good-by to her.  Deb, Valerie and I spent the rest of the day together with Karis at the hospital.  Today was the day the doctors decided to visit!  We had two visits from the transplant team, two from the gastrointestinal team, one from the pain team and two from the contagious diseases team.  It felt like we were in the ICU!  We felt super lovingly cared for!  
 
Results: Karis has an infection, but is responding so well to antibiotics that the docs think she’ll be able to leave the hospital in about 3 days.  They don’t feel the catheter (central line) is contaminated since the infection was responded to quickly.  Karis’s acute abdominal pain got out of control these last four days since the narcotic Dilaudid quit having effect.  But now we have four new pain strategies and are optimistic that at least one will make a difference.  We are now working with two primary hypotheses as to the cause of the pain.  The first is chronic pancreatitis (which can flare up without the traditional high lipase numbers when someone has had a bad case of pancreatitis like Karis has had).  The second is when the nerves “remember” past pains and something triggers them to act as if they were experiencing the past again, even though there is no present organic basis for the pain.  The pain is just as real, but there is no root cause that is really treatable (just as it’s extremely difficult to treat pancreatitis).
 
Tonight Deb, Val and I are all sleeping at home since things seem to be a bit more under control and Karis expects to sleep well, having been awake for most of the day.

Saturday, Jan. 7, 2005
Midnight
(Debbie) It's been kind of a strange day. Karis' fever broke around 3 p.m. and she hasn't had any fever since. She's still not feeling well, and still having a lot of pain, which we had assumed was still pancreatitis, but her pancreatic labs are back to normal, and she says the pain doesn't feel exactly like pancreatitis. So I don't know what's going on. David's spending the night with her at the hospital and I've been enjoying a little time with Rachel before she leaves to go back to Wheaton tomorrow. Thank you for your prayers! If there's no more fever, no positive cultures, and the pain gets figured out, Karis should be able to come back home soon.

11 a.m.
(Debbie) Karis is on the way to the hospital with a high fever. She's been struggling for several days with pain that's been hard to manage at home. We appreciate your prayers!

Thursday, Jan. 5, 2006
(Karis) It's 3:30 in the morning and I couldn't sleep, so I decided to finally write to you. I slept most of the day yesterday because I had to take so much pain medicine to deal with my tummy pain. I'm frustrated right now because I can't figure out a way out of the pain other than constant hunger. (I get so hungry that I eat--that is, chew and spit; if I swallow anything it blocks up my tubes; but that sets off my pancreatitis, which is so painful that I need a lot of pain medicine, which makes me
sleepy.) I would rather live with pain than hunger, but I don't like sleeping my life away either.

My sisters have been the sweetest little ministers, taking care of me constantly throughout the day, learning my complex med schedule, giving my mom a break. They make me feel like a princess, attending to my every need and even trying to read my mind at times. Today we have some special birthday fun planned for Valerie before Rachel leaves to go back to college. My baby sister is turning 18!

Wednesday, December 28, 2005
(Debbie) We're home after a marvelous six days at Glade Spring. I am so grateful that God gave us this special family time. Karis is going to write about that, probably tomorrow, and Rachel will be posting some pictures she took. We were deeply saddened on Monday when phone calls came telling of our friend Susan's death. It came so fast that no one could be prepared, and I want to ask you for special prayers for her family. Thank you so much.

 

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