More updates ~ 5
	4 ~ updates on Karis

Monday, Feb. 28, 2005, 1:30 p.m.
(Debbie) Karis had a rough night. The pancreatitis seems to have hit her harder this time (lipase over 3000 today), or maybe we just haven't gotten the pain under good control yet. Jan stayed with Karis overnight so I'm afraid she's leaving here pretty tired. It was wonderful having her here and hard to see her go, but I know that her own family will be happy to have her home.

Saturday's blood culture was positive today. Yesterday's is still negative, so we'll see. I think the transplant doctors are going to hold out for waiting a little longer even if the culture is positive tomorrow. The infectious disease doctors were pessimistic about successfully treating the yeast two months ago and that seems to have worked out, so maybe this will also, with a little more time.

Sunday, Feb. 27, 2005, 7:30 p.m.
(Jan) Well, Friday's blood culture came back positive today, which is difficult news. The head transplant doctor is as committed as we are to not pulling the central line if at all possible, so is wanting to watch what Saturday's culture does by Tuesday morning before confirming plans to remove the mediport.

The pancreatitis (numbers were higher today than yesterday) continues to produce considerable pain and nausea, and the pain meds produce drowsiness, so Karis hasn't been cruising the hallways quite as much as when I arrived Wed evening. It all depends on one's frame of reference--nurses who haven't seen her since ICU are just amazed at how well she looks and how much she can do, but on a day-to-day basis, it can be discouraging to think Karis is on her way back out of the latest crisis just to be hit with something else unexpected.

God continues to provide daily encouragement as well, through His Word, through His people, through His creation (a lovely snow fall this week!), through music, through truly caring medical staff. I'm continually amazed at Debbie's stamina.

The treatment on Karis' foot will be delayed for awhile, until the bacteremia is resolved. The docs explained today that they can't put another piece of plastic into Karis' body as long as her blood cultures are positive for bacteria, because it would give them another place to colonize. Meanwhile, they're trying lidocaine patches on her feet to see whether these will give her some relief.

Sat., Feb. 26, 2005, 4 p.m.
(Debbie) Well, I spoke too soon about the pancreatitis--it's back full force, pain, nausea, and lipase of 2000 (I didn't hear what the amylase is). A bit discouraging! The good news is that the blood culture from yesterday is still negative today. We need it to stay negative until Tuesday . . .

Fri., Feb. 25, 2005, 1:30 p.m.
(Debbie)  I've come home to do laundry and errands while Jan keeps Karis company.  It's been an eventful day, starting off with a couple of tough things and then some more hopeful news.  We were blessed with a visit from Tina and Rebecca just when we needed someone to pray with us.

1.  We learned that Ed, Karis' favorite and most effective therapist at the Institute (the rehab hospital) is leaving next week.  He was the "bright spot" in Karis' world over there.  We're going to try to make as much progress as possible with Andy while we're still at the hospital, to minimize the time we'll have to spend at the Institute before she can come home to the Browns' house.

2.  More importantly, we learned that the blood culture taken yesterday already came back positive this morning.  The docs are adding Rifampim to the mix and are going to try that over the weekend to see whether they can lick this bacteria, but without much optimism.  They're already reserving OR space on Tuesday for removal of the mediport.  PLEASE PRAY THAT OVER THE WEEKEND THE ANTIBIOTICS WILL DESTROY ALL BACTERIA IN KARIS' BLOOD AND ON HER MEDIPORT SO SHE DOESN'T LOSE THIS CATHETER!!  Thank you!!  This seems terribly important to us, but if she loses it, God can provide a different way to sustain her.

3.  The pain docs have proposed a different approach to treating the neuropathy in Karis' right foot.  On Monday, they want to insert a catheter in her leg by which they will completely numb her lower leg and foot for four days.  During this time, when she will not be limited by pain, she will have aggressive physical therapy to try to restore normal functioning to her nerves and circulation, hoping to "break a pattern" of dysfunctional nerve response.  This is the first time someone has given us hope of restoration of function of her foot in a short time frame.  Since this has been our Lenten prayer focus for her, we're excited!  PLEASE PRAY THAT GOD WILL USE THIS THERAPY TO RESTORE KARIS' FOOT!!

4.  The docs think that Karis could be in danger of developing problems in her lungs again, since they're still healing from the damage caused by the two pneumonias, so they're lowering the pain medication, which makes her draggy, so that she can be up more and work harder to strengthen her body.  She'll be having therapy 2-3 times a day, like she was at the Institute.

5.  Apparently there is infection underneath or behind Karis' bedsore.  The sore itself is healing well, but a CT scan apparently revealed this infection, which would explain the ongoing severe pain she has in that area.  An MRI is to be done today to find out whether the infection has gotten into her tailbone.  If so, she'll be on antibiotics for a longer time.

6.  Today the cellulitis was declared 90% healed.

7.  Karis' white blood cell count has suddenly taken a leap up, so she's off neutropenic precautions!  No more masks!!

Rebecca reminded us today of that amazing passage from 2 Cor. 4:  "Our troubles are slight and short-lived; and their outcome an eternal glory which outweighs them far . . ." (NEB).  We prayed for grace to see God, and thereby keep our internal vision fixed on what really matters.

Thurs., Feb 24, 2005, 11 p.m.
(Debbie) Karis was better today in several ways, and enjoyed Aunt Jan! However, a second bacteria grew from her blood cultures so the antibiotic mix was adjusted a bit. No sign of yeast so far, for which we are very grateful.

Here's what needs to happen for Karis to go back to the rehab hospital: 1.
Negative blood cultures. 2. Increased white blood cell count. 3. Once again, get off IV narcotics. The rest can be dealt with at the Institute. So--should be sometime next week, I think. The pancreatitis seems to be completely resolved.

We had a mini-adventure this evening (nothing much, but when you're in a hospital 24/7 for six months, you have to make the most of anything resembling an adventure that crosses your path!). Karis wanted to go for a walk before bed, so we were wandering around the hospital and just approaching the elevators on the 2nd floor to go back to 7 North when a fire alarm went off, which meant we couldn't use the elevators. We were "stuck" for a while (it's a bit hard to do stairs with a wheelchair and IV pole), wondering if a strong burnt smell meant there was a real fire nearby! Meanwhile Karis' nurse upstairs was fretting about where we were and how off-schedule we were getting with meds and TPN. A kind cleaning man let us into a 2nd floor waiting room and we were just getting the IV pumps plugged in when the all-clear was given. Never did find out whether it was a real fire or not, but Karis was happy to get back to her room and her bed!

Wed., Feb. 23, 2005, 5 p.m.
(Debbie) Karis felt better today than yesterday, though she says she feels like her energy has been sucked out of her. She continues to need oxygen. White blood cell count is a little better; she is receiving injections to improve it. Four antibiotics and one antifungal keep the nurses busy with the IV's. Fever is under control and pain as well; blood pressure stable. We are looking forward to the arrival of Aunt Jan, who will be with us for five days.

Tuesday., Feb. 22, 2005 6:30 p.m.
(Debbie)  Well, Karis' tummy (skin around the D-tube) looks a little better but the blood cultures were positive today for something or other--I didn't catch which bacteria--and her blood pressure dropped, and she's neutropenic (her white blood cell count should have gone high to fight infection but instead it dropped very low), so all of a sudden a big fuss is being made over her.  It seems a bit exaggerated to me, but they say with septicemia things can go bad very quickly and they want to take precautions--they're even calling in an ICU doc to look at her.  She hasn't had high fever since about 4 this morning.  All she wants is for them to leave her alone.  She's on neutropenic precautions now, which means that anyone with any symptoms of illness has to wear a mask to be in her room (better probably just not to come, especially with flu or cold symptoms), and she has to wear a mask if she goes out of the room.

On the other hand, her pancreatitis seems to be healing!  Her lipase is down to 425 and amylase is normal, and the pain is mostly gone.  Hurrah!

It is right, and a good and joyful thing, always and everywhere to give thanks to Thee, Father Almighty . . .

Monday, Feb. 21, 2005
5 p.m.
(Debbie)  It's too soon for any blood culture results, but the doctors think they have found the reason for Karis' fever:  NOT the mediport!!  She was complaining of pain around her D-tube, and I noticed a little bit of drainage and redness around the stabilizer, so took the stabilizer off--and almost cried when I saw the skin underneath:  blistered, irritated, and fiery red in a two-inch circle around her D-tube.  The docs call it cellulitis and say it should clear up in a few days with antibiotics.  Thank God!!  I'm not happy that she has one more painful thing to deal with, but I am so relieved that it looks like something relatively minor and treatable.  Thank you for your concern and prayers.  (The stabilizer is a stomahesive disk that attaches to the skin, with a plastic contraption in the center to secure a tube, so that it doesn't come out. Stomahesive is a special semi-pliable substance that protects and promotes healthy skin.)

5 a.m.
(Debbie) Karis has spiked a high fever. Guess I spoke too soon about her
not having an infection. Of course our immediate concern is her central line (mediport). We won't know until we get results from blood cultures, which could take awhile.

Sunday, Feb. 20, 2005, 5 p.m.
(Debbie) Karis went to church this morning! A wonderful celebration--first time in 6 months that she's been to Sunday morning service. She needed her bed and her pain medicine by the time we got back to the hospital, but it was still a wonderful treat. Her lipase is down to 2000, so it seems we're making progress.

By the way, I guess I wasn't very clear in my explanation of pancreatitis, because many people still think it's an infection. It isn't. It's an inflammatory response to damage to the pancreas. It can become infected, and if that happens, it's more serious. So far there's been no sign of infection, for which we're very grateful.

Friday, Feb. 18, 2005, 11:30 p.m.
(Debbie) Karis had less pain today, so was up and about more than she had been. Lipase is still 4400, but the doctor says her degree of pain is more important as a sign of progress than the numbers. He allowed her to drink 250 cc (one cup) of water over 24 hours. Karis was thrilled. The entire hospital is packed out nearly to capacity. We've had the bittersweet joy of seeing old friends back on 7 North--nice to see them, but disappointing that their kids need to be there.

[Click on image to enlarge]

Thursday, Feb. 17, 2005, 6 p.m.
(Debbie) This morning a specialist in pancreatitis from Presby (adjoining adult hospital) came to see Karis. Exams have not revealed the cause of her pancreatitis so there's not much to do right now except wait for her body to heal itself. Yesterday Karis' pain medicine was doubled, so she's more comfortable now even though her pancreas isn't better yet.

This morning Karis did several new things in PT: stepped up and down a 4-inch block of wood; walked a short way just supported by the therapist (without the walker); and walked up a ramp using the walker. Other signs of progress: she's no longer using oxygen, even for PT, her kidney and liver functions are better, not requiring medication. So far there's no sign of the yeast infection returning to her blood, which is very encouraging as well.

In case, like us, you're not very familiar with pancreatitis, here's a bit more information:
The pancreas is a long slender organ behind the stomach and liver, which connects with the small intestine (duodenum) close to the stomach.(Karis has 4 inches of duodenum left, which includes the connections with the liver and the pancreas) It produces digestive enzymes, such as lipase and amylase, and insulin. If pancreatic cells are damaged or obstructed in some way, enzymes can leak into the pancreas itself, which is extremely painful. To protect it, a large inflammatory response occurs, which contributes to the pain. The enzymes are also absorbed into the blood stream. In the case of lipase, for example, the normal measure in the blood would be less than 40. Karis is running levels in the 4000's-5000s.

The two major causes of pancreatitis in adults are gallstones (which can obstruct the pancreatic duct so that digestives enzymes back up in the pancreas instead of draining into the duodenum), and alcoholism. Other causes are certain medications, infections, high blood sugar or calcium, and trauma (like damage from car accidents). None of these situations is currently going on with Karis, so we don't know what is causing her pancreatitis. In 25-30% of cases, the cause is never determined. The main "treatment," other than eliminating the cause if it is known, is not to eat or drink, so that lower quantities of enzymes are produced while the pancreas heals. If there were obstruction, with a pool of enzymes collecting in the pancreas, they could be drained out, but this is not the case with Karis.

Karis willl be in the hospital until the pain is reduced sufficiently that she doesn't need IV narcotics. Then she can return to the rehab hospital. But with the better pain control, she is continuing to make progress here.

Tuesday, Feb. 15, 2005, 9 p.m.
(Debbie) The pancreatitis battle continues. Lipase today was over 5000. Karis has endured the day thanks to large doses of painkillers. She had an ultrasound and an MRI, both done late in the day so we probably won't hear anything about the results until the doctors come on rounds tomorrow morning. David is safely off to Brazil.

Monday, Feb. 14, 2005, 11:30 p.m.
(Debbie)  Happy Valentine's Day!

Good news:  Karis' bed sore was deemed healed enough to take her off the vacuum pump and switch to a different kind of packed dressing!  That means one less machine to be connected to and one less tube to deal with--and the delight of knowing we're really making progress!  Hurrah!

Bad news:  Karis' pancreatitis is worse, which we knew from the severity of her pain and nausea even before we heard the numbers.  She was put on a PCA pump (which allows her to self-medicate) with higher doses of Dilaudid available to her more frequently.  Even so it was a challenge today to keep the pain under control, and until she can once again do without IV meds, she can't return to the rehab hospital. 

Several measures are being taken to try to discover the cause of the pancreatitis and therefore know better how to treat it.  She can't drink anything, not even water.  She was allowed one cup of ice chips over 24 hours (very generous, huh!)  Even water going into the stomach can rev up the digestive enzymes, which need to be quiet and rest right now.  She was taken off all medicines that could possibly carry a risk for pancreatitis (including ambisone--more about that in a minute).  Tomorrow she'll have an MRI of the liver and pancreas to more carefully evaluate the valve that controls pancreatic secretions into the duodenum, and other related structures, to see whether there is some kind of obstruction (the CT scan done last week didn't show anything out of order).  The transplant doctors have decided to call in a pancreas expert from a neighboring adult hospital to advise them in how to help Karis through this.  He will see her tomorrow afternoon after the MRI results are available.

Re. stopping the ambisone:  this is the medicine that Karis has been on for almost six weeks to eliminate yeast from her blood and try to save her mediport (remember that dilemma from when she was still in ICU?).  We'll probably know within the next couple of weeks whether the ambisone treatment has been successful.  If she starts growing yeast again in her bloodstream, it will mean that yeast "hid" from the ambisone somewhere in the mediport (yeast loves plastic) until it had favorable conditions--ie., no medicine killing it off--in which to start multiplying again.  In that case the mediport will have to come out.  The challenge then would be to get a new central line in, which could be tough.  And you know that Karis must have a central line for TPN (total parenteral nutrition), which is now her only source of nutrition.  So we really appreciate your prayers for saving the mediport!

I've received several questions about whether Karis can eat yet, or suggesting one or another oral nutritional supplement.  Perhaps it is helpful to clarify again that Karis does not have an intestine, since to save her life when she had Legionnaire's Disease, her transplanted intestine was removed on Nov. 10.  Therefore she can not eat, nor can she receive any nutrition orally.  Before the pancreatitis, she was allowed to drink water and a couple of other clear liquids, which would immediately drain out of her G-tube (which connects her stomach to a drainage bag).  If the G-tube is clamped for more than 15 or 20 minutes, she throws up.  It's hard for her to tolerate even small doses of liquid medications given through the G-tube.  In short, she is 100% dependent now on receiving TPN--also called hyperal or hyperalimentation--through a central line.

If you have other questions, please ask!  I know there's been a lot of medical detail in these updates that may have been hard to follow.  Thank you so much for your concern for Karis and your prayers for her through this long and difficult pilgrimage.

David returns to Brazil tomorrow, for a happy few days with Valerie before he travels again (for ministry within Brazil).

Saturday, Feb. 12, 2005, 5 p.m.
(Debbie) Karis had two special treats today:  kind folks arranged for her (and David and me) to have tickets to the Pitt-Notre Dame basketball game (which took place only 3 blocks from the hospital), and two friends from ND came to visit her.  We got in on only the second half of the game because of a small crisis which had to be resolved first (her D-tube came out).  This is the first "event" that Karis has been to for months, and going to the whole game might have been too much (she had pain medicine right before we left and as soon as we got back).  We enjoyed it even though ND lost by 2 points.  :(  The Pitt crowd was ecstatic.

The pancreatitis doesn't feel better yet, but the numbers are getting better:  lipase is down to 1600-something from 2570 when it was first measured.  (We're aiming for under 300.)  When the doctors are confident that she's getting better and is strong enough again to handle the therapy program at the rehab hospital, she'll move back over there.  She'll need to be free enough of pain that she no longer needs IV Dilaudid, which she's using every 2-3 hours at present.  Because of the dose of Methadone she was already on, we'll never know how painful this "really" is, but the amount of pain and nausea she's had is quite enough.  No good clues yet as to what caused the pancreatitis.

Thursday, Feb. 10, 2005, 10 a.m.
(Debbie) Three months today since Karis had her intestine removed. It's nice to see her incision well on the way to being healed, and her bed sore making progress also.

The doctors just came by and told us that Karis seems to have a mild case of pancreatitis. So it looks like she'll be staying in the hospital a bit longer than we had thought. It should clear up on its own, without any specific treatment except symptomatic, but they feel her fluid status has gotten out of balance and we still need to figure out the best way to handle that. For the time being she can't drink anything nor have ice chips, which is the biggest frustration to her--her mouth and throat get very dry and she LOVES drinking ice water. But no more of that for now.
At least we know what has been causing the abdominal pain and vomiting. I went over to the rehab hospital to get her brace so that she can practice walking more easily.

Wednesday, Feb. 9, 2005, 11:30 a.m.
(Debbie) We've made a little side trip back to Children's Hospital to check out tummy and pelvic pain and fix Karis' G-tube which had gotten out of position and caused some problems. Expect it won't be more than a couple of days. Everyone here is very impressed with how great Karis looks, after being gone for just over a week. Our PT friend Andy is going to bring a walker this afternoon so Karis can keep up with her walking practice.

Lent begins today. At the prompting of Battle and Carol, I want to extend an invitation to anyone who would care to dedicate one day during this Lenten season to fasting and prayer for restoration of nerve function in Karis' right foot (whatever fasting means to you).

Karis has been told that this kind of nerve injury takes years, not months, to heal, if it heals at all. For a girl who loves to bike, hike, and dance, this is very distressing. We don't know what God will say about healing her, but we want to ask very specifically for that grace during this Lenten season, and if God says no, then she will make the best of it and seek to honor Him with the body that she has been given. Will you join us in the asking? Thank you so much.

Sunday, Feb. 6, 2005, 10:30 p.m.
(Debbie)  It was another gorgeous sunny day with the snow melting rapidly.  We enjoyed a lovely walk with Karis in the wheelchair, this time over to the Squirrel Hill shopping area on Murray.  Too bad the library is closed.  Some of the shops looked interesting, but all we really wanted was to be outdoors.  We enjoyed several visitors and Karis was tired enough for bed before 9 p.m.  Tomorrow starts another week of serious therapy morning and afternoon.

This morning Karis had one session of physical therapy while I was at church.  She overcame her fear of falling again and walked 180 steps (with the walker, with the therapist's support)!!

The following was sent to us by Jennie.  I post it in appreciation of all the kindness that has been extended to us by so many beautiful people. It's a lovely poem Audrey Hepburn wrote when asked for her "Beauty Tips". It was read later at her funeral.

Saturday, Feb. 5, 2005, 8:30 p.m.

(Debbie)  Eudiscélia and Ricardo returned yesterday to Connecticut (see pics that we took when they came Thurs. evening to say goodbye).  Eudiscélia's hand is healing well, and Ricardo is doing fine.  We will miss them!  And we already miss Dan, who returned to DC last night, and David, who flew to Chicago this morning for a few days in Wheaton, including some time with Rachel.

Today was a beautiful sunny day with temperatures in the 50's.  Karis and I walked through the lovely residential neighborhood surrounding the hospital for almost an hour (Karis in the wheelchair).  She had reduced therapy sessions today since it is Saturday.  I don't know whether she has any at all tomorrow, but she has "homework" to do for all three types of therapy (physical, occupational, and speech).  Karis didn't actually walk today--she's been having a lot more pain since her fall on Thursday, since the impact split the wound top and bottom.  If you want to picture what this is like, form a circle with your thumb and first finger, with the end of your fingernail at the joint of your thumb.  When I do this, it makes the present size of Karis' wound, and the crease made by the second joint of the finger is the length of the split at the top of the wound (the bottom one is about half that).  The depth of the wound is all the way to the bone. (Just to give you a better idea of what has been causing Karis so much discomfort--amazing how much of our body movement seems to be connected to that part of us!)

Here's an "ad" I want to post for Pan American Christian Academy in São Paulo, Brazil.  (Our three oldest graduated from PACA; Valerie is a junior.)  If you or someone you know is interested in investigating one of these opportunities, please let us know.

For the next school year we continue to need a K-8 principal, a High School Principal, a HS Social Studies teacher, an art teacher and a computer teacher.  If you know of anyone in Brazil or the States who might fit into any of these job opportunities, please contact our office.  All applicants need a bachelor's degree in their area of teaching, plus a valid teaching certificate.  Foreign hire teachers also need proof of two years' classroom experience.

Thursday, Feb. 3, 2005, 10:30 p.m. EST
(Dan)

This is Dan, breaking my traditional radio silence. We will generally update this website every 2 to 3 days from now on. If you're missing your daily fix and feel tempted to call us to make sure nothing's wrong, just take it from me now... if there hasn't been an update, nothing's wrong. We'll be sure to tell you quickly if anything occurs that is of great concern, as we have thus far.

Otherwise, its just a day by day progress of slow gains and occasional setbacks, gaining strength, dexterity, breathing deeper, and gradually closing wounds from the bedsore and surgical incisions. As a general estimate, we might be at the rehab hospital for a month inpatient, and then another month outpatient, after which Karis may be strong enough to venture out of Pittsburgh.

Compared to when I last saw Karis (a month ago), she has made amazing progress. When I left, she was still on heavy narcotics and breathing with the aid of a machine. Now she is lucid, her voice is gradually shifting from a whisper to a voice, and her hands are mobile enough that she is able to crochet, to work on a puzzle, and to write a little bit. She is doing much better emotionally than she was just a few days ago, decisively taking control of her body and willing it to improve. Yesterday she was given a memory test, and she could remember an average of 10 out of 12 items on a list, compared to the average human, who remembers 7 items. What can I say? Good genes.

Her legs are still a major obstacle. She has limited control over one of her feet, and no control over the other, due to nerve damage. Yesterday she began walking with the aid of a walker and a brace on the more damaged foot. Today, however, she took a fall, with her legs just buckling under her, so she has lost some of her confidence and we'll have to build it back up again. Unfortunately, she fell on her bedsore--ouch.

We went back to Children's Hospital for our weekly clinical check-up today, and she was examined by a pain-doc, a skin-doc, a surgeon, and a couple other people. Overall, things are looking good. We're making a couple minor changes to her protocol that I won't bore you with.

The transportation van people were totally incompetent (kept us waiting 2 hours, cold, with oxygen tank run out, and sitting too long in the wheel chair), so I have relieved them of all further duties, as well as their heads. If anyone would like one or two faux-ambulence uniforms, only slightly bloodstained, please submit a bid. I will mail them to the two highest bidders as of the end of February. Interstate commerce clauses prevent me from auctioning the heads themselves, but I'd rather keep em anyways on stakes, posted as a warning. Meanwhile, we're hoping Karis will be strong enough next Thursday clinic to ride in our car, to avoid future service industry casualties. I'll be back in DC by then, and it would be a hassle to fly up to Pittsburgh for another summary execution.

Yes, that's right, here writes a member of the Kornfield family who's not all sweetness and light. Oh my!

Thanks for your prayers,

Tuesday, Feb. 1, 2995, 9 p.m. EST
(Debbie)  Whew!  Lots of change after five months at CHP!  But we're very happy to be here at the Children's Institute, a hospital with 100 years of experience in rehabilitation.  Yesterday and today were busy with evaluations by two doctors, physical therapists, occupational therapists, and speech therapists all helping her set goals for her time here, and three physical therapy sessions with a lot of hard work.  This afternoon, with the aid of Ed (the therapist) and a walker, Karis walked 86 steps!!  25, then 36, then 25 again!  She's "outgrown" the parallel bars.  We're almost confident enough for her to walk (with the walker) to the bathroom--maybe tomorrow!  Karis also stood briefly all by herself ("no hands"!!).  Ed seems to have very ambitious plans for every session. 

Karis' TPN and IV medication schedule is being rearranged so that she'll have daytime hours free, so that she can do PT without having to drag the IV pole along.  She has a cute little portable oxygen pack which has replaced having to drag the oxygen tank along, and the rest (her drains and the vac dressing machine) we just manage.

A doctor spent a long time today evaluating Karis' right foot and lower leg.  They have decided to make a brace for that foot so that walking will be easier and safer.  When we ask whether the nerve function will be restored, the answer is always, "time will tell."  Here in this hospital, where we see children so much more badly "damaged" than Karis, this seems relatively minor.  Several kids here were perfectly normal before they were hurt in car accidents, and now have so far to go compared with Karis.  Our hearts ache for their families.  But the atmosphere of the hospital is very positive and optimistic.

Karis expected to have a roommate, but the room that was available for her is a private room.  She can get to know other kids in the teen rec room in the evening, but most of her day is spent in individual therapy sessions.  We were told that Karis would sleep better at night because she would be so busy all day, and that looks to be true.

It's very nice to have both David and Dan here this week, to celebrate Karis' remarkable progress.

Monday, Jan. 31, 2005, 10 p.m. EST
(Debbie) Karis successfully moved to the rehab hospital today. Phone number is 412-420-1585. (The phone gave us some trouble tonight but I think it's fixed now.) Please don't call before 4 p.m. (busy with therapy) or after 10 p.m. (required lights out). Visitors are welcome but only between 4 and 9 p.m.

More details tomorrow. We're happy but tired--it was a big day.

Sunday, Jan. 30, 2005

10 p.m. EST
(Debbie) I just talked with Christie, and she is very worried about her daughter Destiny. Although the kidney transplant surgery went well, the kidney is not yet functioning in Destiny's body. Please pray that it will start to function and that Destiny will get well and be able to go home (she's been in the hospital for almost a year). Thanks so much.

12 Noon (EST)
(Debbie)  To respond to questions I have received:  Yes, Destiny's kidney transplant went very well.  Thank you for praying!  Ricardo is back in the hospital due to high potassium, but they're still aiming to return to Connecticut on Tuesday.  (He just came in to play with me here in Karis' room for a little while until his mom got back from lunch.)  Eudiscélia's hand is doing better, not nearly as painful as it was. 

I've also been asked for more details re. Karis' medical situation.  If you're not interested, just skip this.  I'll try to be as simple as possible and try not to raise more questions than I answer!
Kidneys:  The main reason for the delay in going to the rehab hospital has been inadequate kidney function and trying to stabilize her hydration status.  Because her kidneys aren't functioning well at the moment Karis tends to retain fluid in her body.  Her lungs are very sensitive to any fluid overload, quickly becoming "wet."  They've finally decided for the time being to give her Lasix twice a day, to help her kidneys function better.  They should improve as she continues to come off the steroids.
Liver:  Karis' liver function is the best it has been since October, and her jaundice is almost all gone.  The doctors and nutritionist have been working very carefully with her TPN to find a good balance nutritionally that does the least possible damage to her liver.
Lungs:  Still quite scarred from the two pneumonias; we hope they will keep healing.  Karis still needs to use oxygen from time to time, especially for physical therapy. 
Immune status:  It will take time to restore and rebuild Karis' immune system, but she is starting to produce some white blood cells on her own that she wasn't before.
Neuropathy:  Karis still doesn't have control of her right foot, and still has a lot of pain, but she's on two medicines which seem to be helping.  We'll see as time goes on what happens with this and whether she'll need a different kind of therapy.  There's talk of putting her right foot in a brace for the time being to help with walking.  We'll learn a lot more at the rehab hospital.
Bedsore:  Making progress, though slow.  Karis will continue with the vacuum dressing at the rehab hospital.  She's down to a Fentanyl patch of 75, and the plan is to reduce it by 25 each week.  Meanwhile she's on Methadone, which seems to be adequate pain control at the moment.  The bedsore is definitely what most holds Karis back from being more active, but she's making a lot of progress anyway.
Infection:  Karis is still being treated once a day with antiviral medication for the CMV that caused her pneumonia, because CMV is still in her body (always will be) and we don't want to give it a chance to come back and clobber her again.  And she's still receiving antifungal medication for the two yeasts, until six weeks is completed.  After they stop the antifungal, we'll learn whether yeast is still being harbored in her mediport, because that's when it will have a chance to multiply again.  But we're praying that the medication is killing it off completely.

Oh, here's another question:  Is Karis hungry?  No, she's not; she tends to feel sick very quickly when anything is put into her stomach (eg. oral medicines) when the G-tube has to be clamped off for awhile.  But when the G-tube is draining, which is most of the time, she drinks a lot of water (which drains right out) and hasn't wanted anything else.  But she says she dreams about food.

If there's something else you want to know, please ask.  Just think how far she has come!
  

Friday, Jan. 28, 2005, 9 p.m. EST
(Debbie) Another "first" today: we bundled Karis up, wrapped her lovely warm ND blanket around her, and took her outside in the wheelchair for a few minutes! Her first time outside since Nov. 2, when she went out to vote. She loved feeling the cold, the ice, the snow, the fresh air.

The ambulance has been reserved for noon on Monday to take Karis to the rehab hospital. We're excited! David comes back on Monday, and Dan is coming to visit Tues.-Fri. before starting a new job in D.C.

Thursday, Jan. 27, 2005, 10 p.m. EST
(Debbie)  Karis is doing well, still on track for moving to the rehab hospital on Monday.

Some people have asked me to clarify what happens next and how long Karis can live just on TPN.  We don't know how long she'll be at the rehab hospital nor how long the transplant doctors will want her to stay in Pittsburgh.  When they release her to travel, she would like to spend some time at home in Brazil.  In May she wants to go to South Bend to visit friends and see her class, seniors now, graduate from ND.  We think she'll be able to go back on the transplant list perhaps in June (they estimate that full recuperation from the two pneumonias and from the lost transplantwill take 6-12 months).  The doctors want her immune system to be fully restored before they will do another transplant.

Re. the TPN:  there are two limiting factors.  The first is Karis' ongoing problem with venous access, which was the reason she was listed in the "urgent" category a year ago.  The second is the impact of TPN on her liver.  Both of those factors will motivate the transplant surgeons to list her as soon as they think she is fully enough recovered to be able to handle a second transplant.

Nothing is very clear about the future, but what we do know for today is that God's grace is enough.  I guess that's all any of us really knows!

If you have questions, please ask!  It really helps me to know what you want to know.

Wednesday, Jan. 26, 2005, 10:00 pm EST
(Debbie)  Karis slept well again, praise God!  Today Andy and Susie (physical therapists) took her down to the gym (I didn't even know the hospital has one) so that she could use the adjustable parallel bars for support.  She stood for 4 1/2 minutes, and she took 4 steps!!  For the first time, Karis really believes that she will walk again, even though the neuropathy is painful.
 
Karis has definitely turned a corner.  It seems that a number of disparate pieces are beginning to fit together.  I think (those who have visited can correct me if you don't agree) that if you saw her today, your first impression would not be "this is a sick girl," as it would have been even a few days ago.  I am so grateful to the 7 North nurses who have provided Karis with a safe place to recuperate not just physically, but emotionally and spiritually as well, from the traumatic experiences of the last months.  The nurses have been compassionate, patient, and very willing to give Karis the TLC she has needed, which has made all the difference in her re-assembling of her shattered world.  Many others too have each played an important role.  God has been generous to us with wonderful people and wonderful resources.

Christie, a fellow 7 North mom, just came by to tell me that there may be a kidney available for her little daughter Destiny, and if so, the transplant will begin tomorrow morning.  I told Christie that I would ask good friends, who know how to intercede, to pray for Destiny.  Thank you!

An update on Eudiscélia and little Ricardo:  Eudiscélia's mom has come from Connecticut to help her out for a few days, and the doctors have agreed to let them go home to Danbury on Tuesday, since it will take several weeks for Eudiscélia's burn to heal and she needs the support system she has at home to help care for Ricardo.  Please pray that all of this will work out!

Tuesday, Jan. 25, 2005, 5:30 p.m. EST
(Debbie)  Are you ready for this one?  Karis stood up today!!  For 30 seconds, supported by 2 therapists and a walker.  The news spread quickly around 7 North and people came running to see, but by then Karis had sat down, so she stood up again for a few seconds for them.  Then she stayed in the wheelchair for an hour and a half, our world record so far.  She's exhausted now, but pleased with what she accomplished.  No one imagined she could do that.  Tough girl.

The other great blessing is that Karis had her best night of sleep ever, waking up only a couple of times during the night.  She's conquering this day/night thing.

They're now telling us next Monday for transfer to the rehab hospital.  Hey, by then we may not even need to go!  (Just kidding . . .)

Monday, Jan. 24, 2005, 6 p.m. EST
(Debbie) Transfer to the rehab hospital has been put off to the end of the week, since there are a few medical loose ends that still need to be tied up. Today Karis and I went to a long tunnel connecting several buildings and RAN with the wheelchair from one end to the other and back again. Karis was dying to have the sensation of real movement--it was fun. She also checked her own e-mail today in the hospital library for the first time since Oct. 30, but couldn't stick to it for very long. She was overwhelmed by over 700 e-mails in her In-box and managed to delete about 100 "junk" e-mails but not to actually read very many. Something else to tackle a little at a time . . . We're still reading a few cards a day of those that were sent to her while she was in ICU. Once again, she says thank you, and wishes she had the mental and emotional energy to respond. She tires quickly whatever she does, and we need to encourage her to be OK with accepting this as a time for resting, in God's love and in her friends' love, without having to invest a lot right now.

Oh--I should tell you--today Karis pulled herself up to a sitting position, with no help at all!! We are so impressed by her hard work and the amazing progress she's making every single day. Wasn't it just two or three weeks ago that she couldn't lift her head or her hand from the bed? Two other huge discoveries today: she can write, legibly enough to read! The last time she tried I couldn't read what she wrote. And, the physical therapist confirmed what I noticed over the weekend, that there was a tiny bit of movement in her right foot. We are so excited that she may be starting to regain some function!

Saturday, Jan. 22, 2005, 10 p.m. EST (Debbie) Karis spent an hour in the wheelchair this afternoon. We went through walkways to nearby connected hospitals, to 7th floor Montefiore where there are some lovely big windows for appreciating the winter city landscape. She had more fever during the night and this morning, but since it didn't persist into the afternoon no one is too worried. They did start an all-purpose antibiotic while waiting for results from cultures. She didn't sleep well last night, so we're hoping for better rest tonight.

Please pray for Eudiscélia. She burned her hand (second degree) with hot oil and has had terrible pain. She'll see a burn specialist tomorrow morning because she may need a skin graft. Since I'm here at the hospital with Karis, Carol and Battle have taken her home for some TLC and Carol will take her to the doctor in the morning. The ER doctor didn't think this could wait until Monday. Ricardo is here on 7 North with us. He's fine; all of the 7 North nurses are in love with him. Eudiscélia and Ricardo are hoping to be liberated to move back to Connecticut, where they have a number of family members, in about two weeks!

Friday, Jan. 21, 2005

7 p.m. EST
(Debbie)  Thanks for praying about Karis' fever--we sure don't want her to come down with another infection!  She had a low fever again around noon, but otherwise has been fine, continuing to make progress in physical therapy and learning non-medical ways to manage pain.  We're encouraged.  Friends from Ascension will be taking turns giving me a break of 2-3 hours each day while David is traveling, thanks to Cole who organized this for us.  It is so good to be part of the Body of Christ!
Psalm 31:19  "How great is your goodness, which you have stored up for those who fear you."

6 a.m. EST
(Debbie) Karis spiked a fever during the night. Please pray!

Thursday, Jan. 20, 2005, 9:30 p.m. EST
(Debbie) The highlight of the day was a 20-minute ride in the wheelchair! Things progressed a little more quickly than planned because Karis' peripheral IV was accidentally pulled out when the PT team was putting Karis back into bed from her wheelchair exercise this morning. Rather than put in another IV, they decided to stop the IV narcotics "cold turkey," which meant Karis had time today completely free from the IV pole. We took portable oxygen along with us and took off! Karis was fairly desperate to get back to bed by the time our 20-minute ride was over, but it was fun to see something different and look out some windows (in the Presby cafeteria) at the beautiful winter wonderland we've been graced with this week. Another milestone!

Wednesday, Jan. 19, 2005, 10 p.m. EST
(Debbie)  Karis continues making progress in physical therapy.  She sat in a wheelchair for half an hour today, after sitting on the side of the bed for 18 minutes with no support.  People keep being amazed at how strong she's getting.  They've started doing a little bit of weight transfer to her legs, but she can only handle a few seconds of that at a time so far. 

Exams are being done to determine whether any treatment is possible for the peripheral nerve damage in Karis' right foot and lower leg, which causes lack of sensation in part of her foot and intense pain in other parts (we're experimenting with medicines to relieve that specific pain, which the narcotics don't help).  She doesn't have any control over that foot--can't move it up and down, can't wiggle her toes--and it's cold most of the time.  I'm constantly covering it up with a little blanket to try to warm it up.  The doctors explained to us that this kind of neuropathy can be caused by high blood sugar, by serious infection, or by high doses of certain medicines.  Karis had all three of these situations at the same time.  She worries that she may not be able to walk again, but we're told at least part of the neuropathy can heal over time.  This is a big prayer request!

Pain control is still a big issue, as we work toward getting off IV narcotics in preparation for going to the rehab hospital next week.  Since the Fentanyl patches seem to have kicked in, she's off the continuous IV infusion, but still likes having control of "instant relief" with the PCA button, and uses extra boluses for PT and dressing changes.  Tomorrow, however, they're going to take the PCA away and start using an oral liquid form of Dilaudid.  Turns out the Fentanyl lollipops aren't used at our hospital--I guess kids could too easily confuse medicine with candy, so they're used actually more for adults than for children.  We'll be experimenting over the next couple of days to see how much oral medication Karis absorbs from her stomach and what she will need to keep  life tolerable as she continues to heal.  (By the way, her incision--from the surgery Nov. 10--is healing well--the part that split open in December is perhaps half healed now; it doesn't hurt.)

To reduce stress on Karis' liver, they've started cycling the TPN, first down to 20 hours/day, and now to 16 hours but with 4 hours of IV fluids and two of her four hours "off" used for antifungal medications through the mediport (remember--we're still trying to save the mediport).  That leaves two hours/day.  Her other medications that are given through a peripheral IV can be timed to leave those two hours free.  So, once Karis can do without the IV pain meds, she should be able to have 2 hours a day completely free of the IV pole!  And once she can do without oxygen (which she needs now just for her PT workouts), she'll be able to actually go somewhere in the wheelchair during whatever part of those two hours she can tolerate sitting, rather than just sitting in the wheelchair by her bed still hooked up to everything.  That will be awesome.

(A lady came to visit yesterday who had seen Karis at her worst in the ICU with four IV poles full of mini-pumps all going into her at once, so we were reminded again of how far she's come!)

David is spending the night with Karis tonight.  He'll be traveling Friday for 10 days (Ann Arbor, S. Carolina, Florida, Detroit), so is spending as much time with her this week as he can.

Monday, Jan. 17, 2005, 9 p.m. EST
(Debbie) The transition to 7 North, while wonderful, hasn't been easy for Karis. She doesn't have the energy to pick up relationships she had when last there in early November. Everyone is excited to see her, and she is exhausted. She is going through a grieving time for all she has lost, especially her transplant. She's weak, completely dependent, and doesn't have much reserve emotionally. The transition of pain medication hasn't been easy either. She's experienced a lot more pain today, and that in itself is tiring. All this in no way negates our joy at closing the ICU chapter; it's just part of what's happening right now.

We were told today to plan on about a week on 7 North before moving to the rehab hospital. The man who came to evaluate her was surprised that she's as strong as she is, after all she's been through. I think that was encouraging to Karis, since she's really been working hard on her exercises.

As Karis has felt up to it, I've been reading to her, a few at a time, the letters, cards, and e-mails that arrived while she was in ICU. (Though she can read, one paragraph is about all she can manage at one time, and even that takes a lot of effort.) Today she told me that she is distressed that she is not capable right now of responding to each one. I told her that her friends would understand. She wants you to know that inside she has responded to each card, letter, and e-mail, and has loved every gift and the children's drawings. She dictated the following for me to post for you:
"I don't know how to adequately say thank you for your prayers, which have sustained me these last months. May God, who hears your prayers, bless you."

Starting tomorrow, I'll be taking a laptop with me to the hospital, and we'll be able to connect to the internet from her room. So she'll be able to receive e-mails at her own address again, or you can use debbie@aup.org. Remember that what she most wants is to hear about YOU--you can assume she knows that you want her to get well. :)

I was delighted to receive a phone call from Valerie this evening, so that I could wish her happy birthday (17!). I knew she would be staying with friends after Promifé, but didn't know which ones. She had a wonderful week and appreciates all who prayed for her.

Sunday, Jan 16, 2005, 17:50 EST
Karis is out of the ICU! Wow! Alleluia! Deb and Karis read Psalms 126 written as the exiles were returning after 70 years of exile. 74 days in the ICU or 70 years in Babylon are just about the same thing, don't you think? Read the Psalm and celebrate with us!
I asked Deb if Karis was ready to receive phone calls. She said she most definitely was, that she wanted her door open, wanted to talk with everyone, get caught up with her friends. I was talking with Deb on her cell phone and then called Karis's room to talk with her. I repeated the question. Karis responded with a maximum of four words to any question I asked. She's weak and tired. Not quite as ready to talk with all the world as Debbie! Debbie is so full of joy that she's ready to dance in the hospital corridors. Karis is very happy, but without energy to celebrate. Tomorrow there'll be an evaluation with the doctor from the rehabilitation hospital to see when and how she can go to that hospital from 7th north in the Children's Hospital. Celebrate with us, our great deliverance and joy! You deserve to celebrate after all you've been through with us! Call someone and tell them the good news. Shout it in the streets! Why not?!

Saturday, Jan. 15, 2005, 11 p.m. EST
(Debbie) Karis is doing well. She didn't move to 7 North today only because they didn't have space for her. Perhaps tomorrow . . .

Friday, Jan. 14, 2005, 7:30 p.m. EST
(Debbie)  Plan is to move up to 7 North tomorrow!! (By the way, I counted wrong--today is day 72 in ICU.)  Karis has been switched from Fentanyl to Dilaudid, a narcotic that can be administered on the floor, with both a continuous infusion and a PCA, so by pushing a button she can give herself extra pain medication when she needs it. It will be good for her to be more in control.

This is a transitional phase on the way to getting off IV narcotics so that she can go to the rehab hospital.  The pain management team wants to try Fentanyl patches and--this is for real--Fentanyl lollipops!  Not kidding!  Apparently they have lollipops with 200 mcg of Fentanyl in them that can be used when extra pain medication is needed, like for sitting up and for dressing changes.  Since Karis will probably need pain management for a couple of months yet, no one seems to be in a hurry to get her completely off Fentanyl.

Someone from the rehab hospital will do an assessment on Monday to let us know what condition she needs to be in to transfer over there.  From an initial conversation by phone, it appears they are OK with Fentanyl patches (and lollipops :), with continuing the antifungals and antibiotics, and of course with doing the TPN, so I really think she'll be able to transfer to the rehab hospital soon.  There are a few little medical things to resolve, but not many, and I think she'll soon be able to come off oxygen.  Karis' progress this week has been dramatic, in terms of strength and mobility.  Today she sat in the wheelchair for 50 minutes, though that was pretty tough.  Think about what type of exercise would keep your heartrate in the 160's for 40 minutes straight!

Placement of the PICC has been postponed yet again, to Tuesday.  They apparently are just too busy to fit Karis in sooner, and everyone thinks it's important to do this with pictures to guide them, which means it has to be done by interventional radiology.  Once she has the PICC, she'll be able to go back to full strength TPN and have more energy available for healing and for rehabilitation.

Today I read a number of e-mails, cards, and letters to Karis, from the pile that accumulated while she was "sleeping."  Thank you to each of you for your kindness.  She won't be able to respond right away, but sends hugs and thanks to each of you.

We're excited about getting out of the ICU! 

Thursday, Jan. 13, 2005, 10 p.m. EST
(Debbie) Karis is making good progress toward moving out of the ICU up to
7 North. If I counted right, today is day 72 in ICU; we're more than ready for a change of scenery! She had a consult today with the pain management team about switching from Fentanyl to morphine, since Fentanyl is not allowed outside of ICU. By tomorrow she'll be successfully weaned off the Ativan. She is working on her mobility and strengthening, and is not far from being able to pull herself over in bed (from back to side). Pain from her bedsore is a real limiting factor, including how long she can tolerate sitting in bed or in a wheelchair ( today she made it for 40 minutes, thanks to extra pain medication and a lot of determination).

Karis is still pretty drugged, and not always in total touch with reality, but clearer and easier to understand than she was a few days ago. We're working on distinguishing day from night, identifying day, date, year; and filling her in on things that happened while she was sleeping. She has asked once for access to her e-mail; up on the floor that will be easier to arrange. Progress seems slow but we're gradually going in the right direction. We've seen delightful flashes of her sense of humor during the last couple of days. Eudiscélia stayed with her one night this week (Ricardo is back in the hospital with a line infection; feeling fine now) and David stayed with her the last two nights. Tonight we're experimenting with leaving her alone with Jen, one of her favorite nurses.

Placement of a PICC line (peripherally inserted central catheter) has been put off (again) to tomorrow, because other patients' situations were more urgent. It will be nice when she doesn't have to use uncomfortable peripheral veins.

Wednesday, January 12, 2005; 9:30 a.m. EST
(David)  Karis continues without fever and sleepy, but slept well during the night.  She slept most of the day yesterday and was awake from 6 p.m. to midnight.  Deb stayed with her during the day and I stayed during the evening and night since she gets scared when she doesn't see one of us around.  She continues with halucinations or talking about things that don't make sense, but hopefully having slept well last night will help.  She had some difficulties when they lowered the rate of oxygen coming into her nose, but got better when they increased the flow again. We're having difficulty coming down on the Fentanyl because of the pain she has on her bed-sore (like an open wound) on her bottom.  In general, she's stable and continues to get better slowly.  Two big prayer requests:
1. That we can still save the central line.  A blood culture from five days ago indicates that the yeast infection is not active in her blood anymore.  However, yeast is good at "hiding out" and coming back and can still be in the central line, especially since it's favorite place to colonize is plastic.
2. That we can discover how to cut back on the Fentanyl and heal the bedsore.  The docs say that until she gets out of bed, the wound won't really heal. At the same time, for her to leave the ICU she has to be free of the Fentanyl. But the Fentanyl keeps her sedated and sleepy so it's a vicious circle.  Yesterday she sat for half an hour in a wheelchair. Let's pray that she can do this for ever longer periods of time.

Tuesday, Jan 11, 2005; 10 a.m. EST
(David)  Karis continues without fever, maintaining her basic oxygen levels without the ventilator and sleepy, but with difficulties in really sleeping.  Saturday when I called Deb and her, she was off the ventilator and whispered four words into the telephone: "I'm fine" and "Love you". She sure knows how to make a Daddy's heart beat faster! 

When I arrived yesterday from Detroit, she was sleepy, whispering when she wanted water, to be turned on her other side or anything else.  She also spoke meaningless phrases, a side effect of something called "ICU Psychosis" when a person loses touch with reality and can't distinguish day from night or sleeping from being awake, sometimes hallucinating. They didn't diminish the Fentanyl yesterday because she has been very uncomfortable the day before; she was much better yesterday, so I imagine they'll diminish it a little today. Pray that we can overcome the difficulties of keeping her more awake during the day and her sleeping at night.  They intend to put in a Picc line (temporary central line) today so as to only use her normal central line for the anti-fungal medicines.  More ...

Sunday, Jan. 9, 2005, 11 p.m. EST
(Debbie) When I arrived at the hospital this morning, I was told that perhaps Karis had been extubated too quickly and they weren't sure she was going to make it without the vent. Her blood gases were low, her lower lungs had collapsed, and she was having trouble doing breathing exercises. The doctor wanted the head of the bed up, but that was very uncomfortable because of her painful bedsore.

At the end of the day, her stats were good, her arterial oxygen at 97, her breathing much freer, and her lower lung fields described as "diminished" rather than collapsed. Part of what made the difference was spending four hours lying on her tummy, which allowed her lungs to expand much more easily (and relieved pressure on her bedsore as well). This is the first time she's been on her tummy since her transplant surgery Aug. 25! It was quite a process to switch all her lines, tubes, drains, etc. from one side of the bed to the other so that she could turn from back to tummy. Now that we've had a dry run, we'll be able to do it again more easily.

Emily stayed with her this morning so that I could go to church, which I really appreciated. This evening I read quite a few cards, letters, and e-mails to Karis--the first time she's been alert enough to really track and sustain interest for more than just one or two. It's so lovely to see her smile again.

Saturday, Jan. 8, 2005, 6 p.m. EST
(Debbie) Good news! Karis was extubated today, at noon. Our friend Ren shared the big event and most of the afternoon with us. Karis is doing really well breathing on her own, with oxygen down to 28% via nasal cannula. Within a day or two her throat should heal enough that she can talk. Also, the docs have decided to run Karis' TPN through the mediport the 21 hours/day she's not receiving antifungal medications. Even at half strength, the TPN burns when it goes through a small peripheral vein, so this is much more comfortable for her.

The strain of yeast has been identified as one particularly resistant to treatment, so we appreciate your prayers that God would win this particular battle in a way that will bring honor to Him.

Rachel has just left to return to Wheaton, and David had a good day in Detroit. Valerie left today for the Promifé missions trip in southern Minas Gerais, very excited about doing this once again. Dan had an encouraging job interview yesterday, so we have many reasons to praise God.

Friday, Jan. 7, 2005

10 p.m. EST
(Debbie)  Karis slept most of the morning but was awake most of the afternoon, the most time awake that she's had so far at one time.  She "opened" (she's too weak to manage the tape) one more Christmas present (from her brother Dan--she says thank you!), and that was all she was up for.  At this rate we'll be celebrating Christmas until spring time!  What do you think--shall we keep the Christmas decorations up in her isolation room until she moves out of ICU?

Karis had a great day preparing for extubation tomorrow.  She did really well on both CPAP and T-tube trials.  If she does well again in the morning, she will be freed from the vent!!  Hallelujah!!  And the doc has promised that once she's off the vent, she can attempt sitting in a wheelchair.  She is very anxious to get out of that bed.  Physical therapy plans to deploy several people to help her accomplish that.  Today it took David, Rachel, and me a good long time working together to successfully help her sit up on the edge of the bed, and she was able to tolerate it for about two minutes, resting against her dad.  Certainly it will be easier without all the ventilator tubing, but she is so weak she can't help, and there are so many lines and things attached to her that it's quite a production.

Getting that breathing tube out will make everything else much easier to deal with, especially when her throat heals so that she can talk again.  So far she's doing really well with the Fentanyl wean.  They're going down really slowly--10 mcg decrease per day; she started at 300 and is down to 190.  You can do the math and figure out how long it will take at this rate!  (hey, the yeast infection will take at least a month to treat, so we do have time . . .)  She hasn't had any withdrawal symptoms so far, which is a great blessing, but we have the hardest part yet ahead.  At some point they may be able to switch her to morphine so that she can get out of the ICU.

After getting off the vent (a HUGE step forward!) the immediate challenges ahead of her, which need to be resolved before she can be transferred to a rehab hospital, are:
1.  conquering the yeast infection (God willing, saving the mediport; if not, insertion of a new one)
2.  getting off all narcotics.

Other ongoing issues, besides restoration of her strength, coordination, and muscle tone:
3.  sorting out effective ways to stimulate her immune system, which still hasn't kicked in with any efficacy, leaving her vulnerable to another infection
4.  figuring out the best steroid regimen, which will meet her everyday requirements while stimulating her own adrenal glands to produce what she needs both for everyday and for stressful situations
5.  figuring out how to help "cushion" her liver from the effects of 100% TPN.  Her bilirubin and liver function tests are high.  We forget how jaundiced she is until someone new sees her and reacts with surprise.
6.  healing of her bedsore, which we are told will take weeks
7.  healing of her foot, which is still purple and painful from the tiny clots that clogged her microcirculation when the artery in her foot with the arterial line went into spasm.
8.  discovering the longer-term significance of scarring in her lungs from two life-threatening pneumonias
9.  completed healing of her incision from the surgery on Nov. 10 (it is making slow progress)
10. healing of spirit, soul, and mind from the impact of all that has happened.

This helps us understand why the doctors say it will be at least six months before she can be listed again for transplant.  They will be months of a lot of hard work in rehabilitation.

It's a lot to invest in one life, and Karis is the first to question the "justice" of all that she receives, when so many in the world suffer from simple lack of food and clean water.  But it seems to be what God has put before us, in our little world.  May we be found faithful, and the name of God somehow be glorified through all of this.  Thank you for sharing with us the journey and the joy.

10:30 a.m. EST
Special prayer request: The transplant team has asked Infectious Diseases to make an attempt to treat Karis' mediport by giving her the antifungal medications through the port. The transplant docs are worried that they may not be able to get another line in. So she will not have the mediport removed today. The ID docs are skeptical but willing to give it a try, since the stakes are high. Please pray that this treatment will be successful so that Karis will not lose this catheter. She needs it for TPN while she recuperates, and for the whole transplant process. Thank you!
Let's ask God for special favor in this matter.

Thursday, Jan 6th, 2005; 8 p.m. EST
(David)  Karis is more awake, without fever and progressing well in the first test for being weaned from the ventilator.  She stayed four hours initiating her own breaths and maintained good oxygenization numbers. Alleluia! :) 

She'll go to the operating room tomorrow morning to take out the central line which is contaminated and will have to recover from the anesthetic, even though the surgery is very simple.  If she continues doing well, it's possible that she'll be freed from the ventilator on Saturday.  She really wants to experiment with sitting on the side of her bed and is super motivated to do anything that will help them take her off the ventilator.  Everything went well today, including Valerie's departure for Brazil. She'll be involved this next week in PROMIFE a summer missionary evangelistic project that she, Rachel and Karis have participated in twice a year fro six or seven years now. 

Karis wanted to celebrate Christmas today and was able to open her first present, a bookmark Valerie made, before tiring and deciding to leave the rest of the celebration for another day.

Wednesday, Jan. 5, 2005

12:00 Midnight EST
(David)  Karis is more awake, has a low fever, is agitated and has a serious fungal infection.  The good news is that she is on just 6 breaths a minute on the ventilator and is initiating about 11-12 a minute. Tomorrow they hope to drop that to four breaths and then try the first experience of Karis initiating her own breaths and see how long she can do that.  The infection will require 4-6 weeks of treatment and they need to take the plastic out of all her veins, including the central line, depending for the time being on temporary peripheral lines in her arms and legs.  They've taken out the femoral line.  They intend to give her two more days of really good nutrition before they take out the central line (a small surgery) since the peripheral lines will only allow her to have half the calories she needs.  She'll lose weight and we'll be running a tight rope between eliminating the infection in her blood so we can put a femoral line back in before she begins to have serious problems from lack of nutrition.  We're entering a difficult stage with this third serious infection, but so far it hasn't touched her lungs.  Pray that her lungs will stay free this time and that she can get off the respirator in 2-3 days.  Pray too that God will intervene rapidly to clean this infection out of her blood. 

Karis is much more awake and very hurt to discover that she has missed Christmas with the family and New Years and that she's much weaker and sicker than she remembered being, along with having the afliction of the ventilator tube in her mouth and throat.  She cried a number of times today.  These next few days will be more difficult yet as they continue to diminish the Fentanyl and she is more awake and feeling more pain and discomfort.  She's awake enough to feel uncomfortable, but not enough to understand the reasons. She tremendously wants to get out of bed.  I think she actually wants to discover some way of escaping from the ICU and the hospital. But she can't even move her foot off the bed, so it's going to be a while before she escapes. Rachel is staying with her tonight since she'll have to have her hands bound in some fashion unless someone's actually watching her.  Today she managed to pull out one of her IV lines from her hand and she tried to pull out everything she could reach, including her ventilator tube. Watching her sometimes makes you want to laugh, other times cry.

Valerie leaves tomorrow (Thursday) for Brazil; I travel Friday for Detroit; Rachel travels Saturday for Wheaton and I'll return to Pittsburgh late Sunday night or Monday.  Thanks for your prayers!

1:00 PM EST
(Val) Hello all! This is my second to last day in Pittsburgh.  It was wonderful to be here these two weeks.

Not much has changed with Karis today, except that she has a low fever.  Her Fentanyl came down to 4.2 ml (210 mics), and her respirations are set at 8.  Tomorrow she will probably be ready to try C-PAP, where she iniciates all of the breaths.

The main goal today is to be able to pull the femural line.  They were able to put two peripheral lines in her right hand.  These and her mediport (her main catheter) will be used instead of the femural line.

I hope you all have a great day!!

Tuesday, January 4, 2005

10:50 PM EST
(Val) We are... happy, tired, worried, grateful, and I don't know what else. I stayed at the hospital all day with my mom today and we saw Karis' eyes open few times, thankfully. She got some rest!! :)

After the update that my dad wrote today, a doctor came in and gave us some more news: they found another infection in Karis' blood. This time it is yeast, a type of fungus. The yeast is in the blood and looking for places to settle and grow. To diminish these places, they want to take out as many lines as possible. They took out the arterial line from her foot and put a new one in her wrist. They will remove the femural line as soon as possible. The treatment of this new infection should take four to six weeks, depending on its gravity.

In spite of this, Karis did not have a fever today (yay!). The worst part of the day were probably the hours three doctors took trying to get the new arterial line in. But she survived. :) Karis' left foot is purple but most likely out of long-term danger. The last arterial line in that foot probably caused small clots to be trown into the capillaries, causing a problem with the appearance of a big bruise. It will heal over time.

When we left the hospital today, the plan was to leave the respirator and medication numbers as they are over night. Karis was beautiful, sleeping in peace. Although each new infection makes our hearts ache, we are still able to praise God for each large and small blessing and for who He is. Without His strength and love, we would be nothing. Thankyou for your prayers!!!!

11:00 EST
(David)  Karis has some pain, is almost without fever and is improving.  After hitting 103.6 last night, she's down to 100 this morning.  Deb and I think the fever was due to steroid deficiency rather than infection.  The "peep"is at 5 (hurrah!) and respirations are at 10; if all continues well, tomorrow they'll do some tests with Karis initiating all her respirations, just being helped by the ventilator after she iniciates.  We're moving in the right direction, slowly but surely.  Fentanyl is at 230, coming down about 5% a day; Karis has some pain, mas hasn't been able to tell us where.  It could be in one of her feet, both of which have had problems these months, or possibly her bedsore on her bottom which is an open wound and hard to treat because her coxxic (the end of her tailbone) protrudes right there.
Today is the two month anniversary of her going into the ICU.  It's a bit discouraging, still not being able to project any clear date for getting out of the ICU and to the rehab hospital.  Who knows, maybe two weeks if all goes well (for a change!)?

Monday, Jan. 3, 2004
10:30 p.m. EST
(Debbie) Valerie and I just arrived home from the hospital, feeling rather
discouraged: Karis' fever is back (39.5 when I left), her bed sore is worse (a vacuum dressing was applied tonight), she's struggling with high blood pressure and her foot is worse; overall not a wonderful picture.

Thank you to those who have sent cards and letters and gifts. I know she will really appreciate them when she's able to come further out of the sedation. She's not yet alert enough to be able to follow much conversation or content or to communicate much more than what hurts or is uncomfortable. But I'm saving everything for when she's better!

12:00 Noon EST
(Val) Not much has changed since yesterday. They have not changed the Fentanyl settings any more because of the amount of pain Karis felt yesterday. The bed sore on her back is what bothered her the most, so today they are going to try what is called a vacuum dressing. This is a dressing that hooks up to a machine which sucks out the bad stuff and irrigates the wound. It will probably be started this afternoon. Yesterday, Karis' nurse explained the vacuum dressing to us and said that she has never seen it not work. We will be very grateful to see Karis' big sore get better.

They have changed a few of Karis' antibiotics, which are being used mostly for prevention and to be sure that whatever caused her last crisis is gone. They have weaned a little bit of the hydrocortisone (one of the
steroids) and have brought her respirations down to 14.

Karis has slept a lot today, thankfully. She really needs to rest and build up her strength. She has a long road before her towards getting strong again, but we trust God is bringing her through in His time.

Sunday, January 2, 2005, 11:10 PM EST
(Val) Hi!! What a beautiful new year!! It is Val writing again.  I hope all of you had a good New Year's.  All is well here.  Each of us is learning to rest in the Lord, in many ways.

Karis is beautiful, well, and without fever.  Each day we see a little more of the Karis we know returning.  They are weaning the Fentanyl and the respirator, slowly.  Her peep went from 8 to 7, and her respirations from 18 to 16.

It was hard for Karis to find a comfortable position today, probably because the decreased Fentanyl allows her to feel more pain.  She was able to rest most of the day, only awaking occasionally with the pain.

Thank you all for your care and prayers for Karis.  May God bless each of you!!

Saturday, January 1, 2005! 12:00 EST
(Rachel)  Happy New Years!!!  I hope everyone is having a wonderful celebration of 2005!  My family participated in a delicious feast at Church of the Ascension before going over to the hospital for a while with a couple of good friends, and then going downtown to see fireworks.  When we were with her, Karis went back and forth between having her eyes partially open and being completely asleep.  She tried to say somethin a few times, but we couldn't lip read well enough to figure out what.  However, I'm sure that if she could, she would wish all of you a very happy new year!  Karis continues stable, resting well, and is completely free of fever.  Her vital signs look excellent, and the ICU people are once again slowly weaning her off the ventilator.  For any of you who like to follow the numbers, ever since last night she has been at the goal number of 40 in terms of oxygen percentage, her PEEP is at 8, she is receiving 15 breaths per minute (and is presently not trying to do more than that on her own, which means she really is resting), and her PIP (another important vent number) has been brought down from 26 to 20, with the possibility of coming down even more today, and with a goal of 14.  Karis seems to be happily back on the road to recovery.  Praise the Lord!  May God bless all of you (or as Pittsburghians like to say, God bless yens)! 

Friday, December 31, 2004, 12:30 EST
(David) Karis is stable, resting well, with just a fever of 100. She slept through the night, waking his morning long enough to open her eyes and smile at Debbie before going back to sleep. Fever has stayed low grade since the scare at 8 p.m. yesterday. It seems that she's responding well to one of the meds they threw at her, even tho they don't yet know which one. The X-rays of her lungs are the same, neither better nor worse. Her numbers are good and they cut back on the ventilator's respirations from 21 to 19, leaving the rest of the settings as they were. They've increased her steroids again to 4.0 and canceled her CT Scan for now. Summarizing, she's much better and it looks like the critical moment of our "small crisis" has passed. :)

Thursday, December 30, 2004, 12:00 Midnight EST
(David) Karis is stable after a difficult day with fever that reached 106.3 F (41.3 C). After taking out the femoral catheter, they put a new one in the other leg. They stopped using the central line because of the possibility that it could be contaminated. They did everything they could to discover the source of the infection, very worried with it's intensity. They have some clues that they're treating with heavy medications so they can clobber whatever might exist while they await the results of the lab cultures. They'll do a CT scan tomorrow of her abdomen to see if she has an infected abcess. Her X-ray tonight was similar to that of this morning indicating that we're not dealing with another pneumonia, thanks be to God!

The ventilator is at 50% oxygen, 21 respirations per minute, total pressure of 34 (Peep of 8 plus 26 of pressure above peep). She's got good numbers re the oxygen in her blood, so the respirator increase has been necessary since earlier her numbers were not good. She had problems with high blood pressure that would dramatically switch to low blood pressure, going as low as 60/30. She's well sedated and stable now so we hope the crises has peaked and that now she'll start getting better. Her fever is down to 101.5 (38.6 C).

Dan left tonight for New York for New Year's and two days from now will be back in Washington, D.C.

Thursday, Dec 30, 2004, 11:15 EST
(David) Karis is having difficulties, with a new fever that reached 104 (40.3 C). We don't know where the fever is coming from, but they're taking out her femoral line through which she receives medications, sedatives and everything, with the hopes that the line is the source. They're putting in a new line. (Personally, I think this is a shot in the dark, but we really have no clear source for her repeated fevers over the last month, so we're hoping this may work!). They had to increase the oxygen to 60% and the breathing rate to 18 per minute. This greater dependence on the ventilator puts us back about 3-4 days.

Pray that God would intervene for Karis not to enter into a third crisis. I don't know if she'll be able to handle a third crisis well when she hasn't even come out of the second, which actually hit us before she could recuperate from the first. The X-ray of her lungs was just a little better today, so the doctors don't think this is a new pneumonia.

Wednesday, Dec 29, 2004, 11:30 EST
(David) Karis is well, progressing little by little. The big news is that she indicated that she wanted the head of her bed raised so she could sit up in bed. She sat up like that for 10 minutes before lying back down to rest. This is in spite of the full force of the sedative (Fentanyl 270).

She diminished a little more her dependence on the ventilator from 18 respirations per minute done by the machine to 10. Other ventilator numbers: 42% oxygen (goal 40%); peep 8 (goal 5), pressure other than peep: 14 (we've reached the goal on this count); respirations 10 (goal 4). After reaching the goal, they'll test her to see how long she can breath without help from the ventilator, waiting for her to do that for 24 hours before freeing her from it.

Tuesday, Dec. 28, 2004
(Debbie) A note to friends re. Karis' e-mail:
It just occurred to me that Karis' e-mail In box might be getting too full, so I accessed her e-mail. Apparently the last time that Karis checked her e-mail was Oct. 30. It may be hard to remember that far back, but if you sent something to Karis that you want me to access and print for her, please let me know via debbie@aup.org . Otherwise I will not invade her privacy by reading her mail, so it may be some time yet before she reads it. If you think you have communicated with her in the last couple of months by sending her an e-mail, you haven't.

From now on until Karis is well enough to check e-mail again for herself, if you want to send her an e-mail message, please send it to me at the above address and I will print it and take it to her at the hospital. As she begins to wake up over the next days I expect she will appreciate hearing from you--especially with news about yourself. During the brief interval she was conscious between her two bouts of pneumonia, she really wanted to know what was going on in the world and what was happening in the lives of her friends.

Monday, Dec. 27, 2004, 6 p.m. EST

Sent to Karis by Jill:
"You Raise Me Up," lyrics by Vrendan Graham, music by Rolf Lowland, sung by Josh Groban.
When I am down and, oh my soul, so weary
When troubles come and my heart burdened be
Then, I am still and wait here in the silence,
Until you come and sit awhile with me.

You raise me up, so I can stand on mountains
You raise me up, to walk on stormy seas
I am strong, when I am on your shoulders
You raise me up . . . to more than I can be.
You raise me up . . . to more than I can be.

(Debbie) Battle, Dan, and Rachel divided night shift, and Valerie and I have spent the day with Karis. She's doing well, though not able to progress on the ventilator quite as fast as hoped. She has had less Fentanyl so far today than yesterday, though that too is going slower than the 10% that was projected. We're all learning a bit more patience, especially Karis.

Sunday, Dec. 26, 2004, 10 p.m. EST
Hi! It's Val again!! I arrived here on Wednesday and spent Christmas with my family. It is beautiful.

Karis continues like yesterday, sometimes sleeping peacefully, sometimes awaking. When she wakes up, she still becomes very agitated and cries. During the last few hours, my mother was able to calm her down so that she did not need more sedative. Yesterday Karis heard a doctor say that before she got off the respirator she would have to lift her head. Today, my sister tried her best to lift her head but was not strong enough yet. The Fentanyl did not come down today because last night they had to use a lot of extra sedative to keep her calm. Now we are leaving someone with her during the night so that more sedative will not have to be used to calm her.

All of Karis' numbers are still good. She is progressing, but it will be difficult to face the whole process before getting off the respirator again. She has not woken up enough to understand explanations. She only knows that she does not like what is happening. However, if everything goes very well, they will be able to remove the respirator within a week. Pray that the Lord will fill Karis with supernaturalpeace, firmed in Him. It is wonderful for us to see her beautiful blue eyes, but for her it is terrible to see this tube again. It does not make sense. Let us pray, then, that she will find the strength, the courage, and the faith to stay calm in this situation.

It is also painful for all of us to go through this. The only help we can offer her are words and holding her hand. But we rejoice in having her with us and in being together. Each day of improvement is a victory. These days with the family together have been precious. Thankyou so much, all of you who have surrounded us with prayers. Thank you for your love and perseverance. I pray that the Lord will also surround each of you with His grace.

Saturday, Dec 25th, 2004 7 p.m. EST
(David) Karis is in her FOURTH straight day of getting better. Alelluia! We had a wonderful Christmas day as a family, dividing the day between festive moments with Battle and Carol at home as a family and festive moments at the hospital. Of course, we'll have a second Christmas with Karis in 2-3 weeks when she's up for celebrating and can open presents and read cards or at least enjoy having them read to her.

Ventilator: Compared with three days ago: her dependence on nitric oxido went from 60% to 12%; pressure support in pounds per square inch went from 35 to 22 and peep went from 14 to 9; respirations went from 22 to 20 and oxygen continues at 60%. All her numbers are excellent. If everything continues as well as it's been going, she should be at the point of testing whether she can breathe on her own even while still on the ventilator 4 days from now. It'll probably take another three days for her to acquire enough strength to breath for 24 hours with the ventilator attached, showing that she can handle breathing long term without it, at which point they'll free her from it.

Sedative: They cut back on the Fentanyl by 10% from 300 to 270 and the other sedative, Adevan, from every 4 hours to every 6 hours. She has had moments of being much more awake. Several times she has become agitated, cried and been clearly distressed, once being at the end of the day today when the doctor commented that it would take about a week for her to be weaned off the ventilator. When she really reacted, the doctor commented to the nurse that maybe they should give her an extra dose of sedative; Karis shook her head firmly to say "no" indicating that she definitely didn't want them to do that. Her heart rate shot up, her breathing got erratic; but once the doctor left and we stopped talking about her condition, she settled back down to a restful mode. These next days and weeks are going to be more difficult as she gains consciousness that once again she has "lost" several weeks of her life without knowing what happened or having even the chance to have an opinion about her situation. They'll probably cut back on the sedative just 5% in the next few days so that she can stay relatively sedated until she's closer to being freed from the ventilator. They've also begun to cut back on the steroid, hydrocortisone, from 4.1 to 3.5.

Christmas reflection: have you stopped to think how much Jesus left behind when he became a baby? I encourage you to discuss this with your family or friends, maybe at your next meal together, commenting on at least a half dozen atributes that he left behind, going on to experiment basically the opposite as a newborn.

After that reflection, if you'd like, you could go on to think about a second question: which of these changes are being experienced by Karis in this stage of her life. Of course, she didn't begin with infinite atributes like Jesus, but the comparison helps us understand a little more of the privilege that we have in accompanying her in laying aside her glory in an experienca a little similar to that of our Lord. There's even a sense in which her challenge is greater. Once Jesus became a baby, he wasn't conscious of all he had left behind or lost. Karis, as she gains consciousness, will be very aware of what she has lost. The challenges are immense: learning to do the most basic movements, fingers, toes and every part of her body; not able to walk, sit, turn over, go to the bathroom, bathe herself, eat and so forth. As we've asked before, may God give her a supernatural grace to see the positive and not the negative. At the same time, may she have complete liberty to express her grief, pain, sadness, fear, anger and whatever other feelings that may surface. Once again, thanks for your prayers!

Friday, Dec. 24, 2004, Midnight
Merry Christmas, everyone!

Karis' room looks festive, thanks to the cards hung all around her room, like a great cloud of witnesses to encourage her. A friend from 7 North
brought her a cute little Christmas tree today, about two feet tall. I don't know whether she'll be pleased or shocked when she wakes up to discover it's Christmas time already.

Karis is doing well, continuing to wean one or another parameter on the ventilator bit by bit. If she continues to tolerate lowering the peep and
is able to get as low as 10 by tomorrow, they will start weaning the Fentanyl 10% per day, as seemed to work well the last time (5% every 12 hours). That will be a wonderful Christmas present.

Thursday, Dec 23rd, 2004, 12:00 noon EST
Karis continues to improve for TWO days running. Alleluia! Yesterday she diminished her dependence on the nitric oxido of the ventilator from 60% to 40% (the goal being 2-3%) and the total ventilator pressure from 35 to 30 pounds per square inch, the former number being capable of damaging her lungs. She continues without fever and the results of Monday's broncoscopy show that there is no infection in her lungs! Her problem now is principally inflamation and possible damage to the lungs. She continues with good numbers today and they've cut back her oxygen on the ventilator from 65% to 60% (the goal for getting off the ventilator being 40%). If her numbers continue well, the next and last step for today will be to diminish her "peep" from 14 to 13 and see how she responds (the goal to get off the respirator being 5). In the two last days, her blood pressure has bottomed out and jumped repeatedly, but now it's steady and under control. She continues with a high dose of Fentanyl (300) and is resting well; when she is less dependent on the ventilator, we'll begin the weaning off the Fentanyl. Last time that took several weeks, cutting off 5% a day so she wouldn't go into withdrawl. Her white blood cells are at a good level and her body has recovered a good deal of it's ability to defend itself against infections. She's on a steroid which is helping her considerably right now, but will also need to be weaned once she's better.

Wednesday, Dec. 22, 2004
4 p.m. EST
Karis wrote to a friend in July,
God has provided for us our whole lives. We have often glimpsed the desert on the horizon but it has invariably bloomed around us as we walk into it.

Those blossoms so often are the people God places in our lives, to encourage, challenge, and strengthen us. Thank you so much for helping make a garden out of the desert we are walking through. We are humbled by the generosity and graciousness of so many.

I promised a bit more information about ARDS. My sister Marsha wrote, "We never knew it would be good news to discover one has Adult Respiratory Distress Syndrome -- but when you already have the distress, it's certainly good to learn what it is and how to treat it!" I guess the main thing the doctors have emphasized to us so far is that the ARDS will delay recovery from the CMV pneumonia and extend her overall recuperation from the Legionella, which may end up meaning delay beyond the six months we have been 'planning' on before going back on the transplant list. But we continue to be happy that we seem to have broken through that seemingly "stuck" place and already some weaning has been done on the respirator--small changes, but in the right direction. We know we have a long way to go, but at least we are starting to move!

ARDS can develop following any serious assault on the lungs. We first heard the doctors discussing it when Karis had Legionella, happy that at that time she was not developing ARDS. It involves inflammation and stiffening of the alveoli (the tiny end branches of the lung tree, where gas exchange takes place), resulting in--you guessed it--respiratory distress and low arterial oxygen, which impacts every other part of the body.

A doctor cautioned me last night not to be too concerned if I found high morbidity and mortality rates in my research on ARDS, because the highest mortality occurs in patients over 70 years, and those are factored into the rates cited. What is of more concern is how this will affect Karis in terms of chronic respiratory dysfunction. Only time will tell to what degree the lesions in her lungs will heal. This was already a question left over from the Legionella. Her lungs had significant scarred areas from the Legionella before she got the CMV pneumonia, and now ARDS. What they say Karis mostly has going for her is that she is young and will heal better over time than an older person would. But it will take lots of time. The progress she had made in physical therapy is of course all lost now, and she is weaker than ever. We are told she will need steroids for at least a month, probably longer, and they also weaken muscles. (These are corticosteroids--they have the opposite effect on muscles from the steroids you read about on sports pages.)

Karis, of course, is not yet aware of any of this. She was still working toward the courage to look at her tummy when she got sick again--she really has not yet processed the loss of her intestine. Once again, we are hoping and praying that Karis will be able to wake up (come out of her coma) before Valerie leaves again (Val arrived this morning and leaves January 6). You may remember that Val was hoping to see Karis awake before she left in November, and was comforted by thinking Karis would definitely be awake when she came back for Christmas. Well . . . I am so grateful that David did get to see her awake on Sat. evening before she was reintubated on Sunday.

9 a.m. EST
I have good news: Karis has made dramatic improvement through the night! I only have time to give you the short version right now, but will fill in more details later. Bottom line is that the docs have figured out Karis has Adult Respiratory Distress Syndrome (more about that later). Treatment is steroids. Karis started receiving steroids late afternoon/early evening. Overnight, her arterial oxygen went from 61 to 127, her fever disappeared, her heart rate is now in the 90's, her blood pressure is steady without any meds supporting it, her breathing is calm and relaxed . . . Praise God with us! And I'll fill in the details later about the implications of ARDS.

Tuesday, Dec. 21, 10 a.m. EST
(Debbie) Bimode wasn't as helpful as they hoped, so now they're trying nitric oxide, back on the ventilator settings she was on yesterday. Karis seems to be "stuck"--not getting any better, and continuing to spike high fevers and run a constant low fever. This is not typical of CMV, but despite daily cultures, no other infection has been found in her body. The docs decided to start her back on two wide-spectrum antibiotics today anyway, just in case they're missing something. They're having to use Dopamine and Epinephrine to keep her pressures in normal range. Everyone is puzzled and a little worried, wanting to see a breakthrough. Good news is that her bone marrow is responding to the medicine and brought her WBC level up to 11.5 today. That should help her fight the CMV.

Monday, Dec. 20, 2004

10:30 p.m. EST
The doctors were not happy this morning with Karis' blood gases (low
arterial oxygen) and ongoing fever. They called the National Institute of Health for advice, and they recommended doing another bronchoscopy, which was done this afternoon. Karis was also switched to a different
ventilator, that has a setting called "bimode," sort of in between a regular ventilator and an oscilator. She's on Epinephrine to keep her
blood pressure up, and the Tylenol isn't doing too well to cut the fever. It was altogether a rather frustrating day, but I just called the hospital and the nurse told me that Karis was resting quietly, seemingly recuperated from all of the hullaballoo of the afternoon and her bath, and that finally her arterial oxygen is up closer to where they want to see it, up about 15 points since this morning. (Dan and Rachel were there with her when I called.) We hope it was all worth it. Please pray that there will soon be an answer to why Karis keeps running these fevers and having difficulty with gas exchange even at high ventilator settings. Thanks.

9 a.m. EST
Karis' blood gases are not what the doctors want them to be, so settings have been increased a little bit on the ventilator. She continues with low-grade fever and is being given less sedation because of low blood pressures. She opened her eyes and looked at David several times this morning as he reads to her. She tries to say things sometimes but we can't understand her.

Sunday, Dec 19th, 2004

11:15 p.m EST
(Rachel, Karis’ younger sister) Karis is mostly holding her own. She still has a low-grade fever, so they are doing more tests to find out if there are any causes we do not yet know about. She has opened her eyes and wanted her mother’s presence with her a couple times during the day today, despite fairly serious sedation, but last we heard from the nurse she was resting comfortably, and seemed pretty out of it. Her breathing is a little bit better since her Peep was increased to 14.

9 a.m. EST
(David) Karis is stable, but more dependent on the ventilator and sedatives. She is still fighting a fever that got up to 39.6 yesterday (103 farenheit) but at the moment is at 37.8. They increased the Fentanyl from 200 to 300 and every two hours are giving her an extra dose of 100. They also increased her oxygen rate to 75% since her numbers were falling. She's not really worse, just continuing to consolidate the plateau, but we haven't yet begun to see clear signs of improving.

The reflection from My Utmost for His Highest for December 18th is on Romans 8:28 “And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Oswald Chambers comments on the "Test of Loyalty" in this context and writes:

“To be faithful in every circumstance (Pittsburgh) means being committed to just one person: the Lord. All of a sudden, God undoes a specific set of circumstances (since Feb 5th with Debbie moving to the States to be with Karis, various aborted transplant calls, the transplant, rejection, losing the intestine, pneumonia, pneumonia 2!) and then we realize that we have been disloyal in not recognizing that He has ordained them; we don't understand His purposes, and that experience will never be repeated in our lifetime."

In the light of this, I can clearly see that I have persevered in these days and weeks and who knows, months in an disloyal way. I haven't walked with my eyes fixed on Jesus as much as on the circumstances; not celebrating and embracing His purposes to make me more like Himself in the midst of suffering. I repent of this and am asking the Lord to fill me with His power to see with His eyes, not just Karis or my situation, but also that of those around me who also need Jesus's touch, to see His purposes in the midst of their difficulties.

Thank you, again, for accompanying us on this marathon that has turned into a triathalon and who knows is well on its way to becoming a decathalon. We're coming up on four months in the hospital since the transplant on August 26th (not counting the three days Karis was well enough to leave the hospital) and more than six weeks since she went into the ICU with still no clear idea of when she'll come out. If everything goes well, it could be 3-4 weeks... so that she can go to the rehabilitation hospital for several weeks or months... so that she can recuperate sufficiently to be listed for a new transplant in the middle of 2005, Lord-willing... so that...!

Saturday, Dec. 18

11 p.m. EST
(Debbie) Karis spiked a high fever (39.6) around 4 p.m., which has come down to 38.4 with Tylenol, ice packs and cool compresses. Fentanyl is up to 300 mcg/hr, with boluses of 100 mcg every 2 hours. Otherwise not much has changed. The infectious diseases doctor told us that CMV is difficult; we should expect a number of ups and downs over the next several days before there is really significant improvement.

11 a.m. EST
(Debbie) I'm writing from Karis' bedside using David's laptop, while he makes some phone calls. Karis is a different girl than she was two days ago! Her rash is almost gone (in fact, she's pale today--she'll be
receiving blood and platelets during the day today), the puffiness from extra fluids is almost gone, and most importantly, she looks comfortable, not fighting for breath as she was when her arterial oxygen was down in the 20-40 range. Everyone who walks in the room who saw her earlier in the week comments on how much better she looks.

Her numbers are all getting closer to normal limits, though attempts to lower the settings on the ventilator have not yet been successful--she's
still on 70% oxygen (arterial oxygen is now in the 60s). They've had to increase her Fentanyl drip to 250 mcg (5 ml/hr) and give her frequent
Fentanyl boluses, as well as give her Ativan every two hours, to keep her comfortable, which is more than she ever had with the other pneumonia, but it could be that her body is just not as sensitive to these drugs as it used to be. Nothing has yet grown from the cultures except CMV, so that may be all we're dealing with. She was afebrile during the day yesterday, but spiked again during the night.

I think we can now confidently say that Karis has turned a corner and is not continuing to get worse, thank God. That is a huge relief! Now she's in the long uphill battle to get better. Her lungs need to heal, and then
we'll have the challenge all over again of getting her off the narcotics. I haven't yet seen her x-rays from this week, but the ICU doctor says he'll show them to us when he has time later in the day.

Rachel arrived from Wheaton last night, and is sleeping off finals week this morning. I expect that she and Dan may show up here at the hospital
around lunch time. Valerie has finished her semester at PACA but opted to stay in São Paulo a few more days to participate in activities
there. She'll arrive Wednesday. It would be truly lovely if Karis were able to wake up in time to share Christmas with us, but that may be too much to hope for. When I asked her (before she had to be intubated and sedated again) what she wanted for Christmas, she said all she wanted was to have our family together.

Friday, Dec. 17, 2004

2 p.m. EST
Karis is getting better! Her X-ray this morning was a little better; she no longer has a fever, her heart rate has come down to 106-110 a minute instead of 145 like it was two days ago. They are decreasing just a little her dependence on the ventilator, moving the peep from 12 to 11 and the oxygen level from 70% to 65%. They've stopped the medicine for keeping her blood pressure up and she's resting well. Aleluia!

6 a.m. EST
Karis had a good night! All of her numbers (vital signs, blood tests,
etc.) are a little bit better. We're very grateful.

Thursday, Dec. 16, 2004

4 p.m. EST
(Debbie) I'm writing from the hospital library with a bit of encouragement. Karis seems to have plateaued. She's not better, they say, but she also has not continued to worsen. In fact, they've been able to ease back on the paralytic drug and bring the percentage of oxygen on the ventilator slowly back down to 70%. The doctors say that if she can hold on to this plateau the rest of the day, it bodes well for tomorrow. Perhaps the antivirals are beginning to have an effect. Thank you so much for your prayers.

3 p.m. EST

Dear friends, who have been so faithful in love and prayer,

We really need you today. Karis is a very sick girl, and the doctors are not disguising their worry. Her lungs and her whole body are being taken over by CMV (cytomegalovirus). One effect of the CMV is to suppress her bone marrow so that it doesn't produce the white blood cells she needs to fight the virus. Her white blood cell count yesterday was 1.2. She is receiving medicine to help stimulate WBC production, but so far the virus is winning.

Karis is unconscious and paralyzed, her body swollen with extra fluids and covered with a red rash. Every time they try to reduce the fluids with diuretics, her blood pressure bottoms out. She's on dopamine and norepinephrine to keep her pressure up, several antibiotics, two antivirals, and one antifungal. All that can humanly and technologically be done is being done to keep her breathing until the antiviral medications have time to take effect.

As I write this, the doctors are deciding whether she needs to change over from the ventilator to an oscilator. This is a freaky situation for us--we've "been there and done that," and can't believe it's happening all over again, especially when Karis was doing so well.

Thank you SO much for standing with us. I'm sure God will show you how to pray.

Love,
Debbie and family

8 a.m. EST
(Debbie) Kairs is doing badly. During the night they couldn't keep her oxygenation within safe parameters until they paralyzed her. They had been trying to avoid paralysis because of the weakness of her body, but finally had no choice. They are at the stage now of deciding whether she needs to be transferred to an oscilator. She has a very high "load" of CMV (virus) in her body.

Wednesday, Dec 15, 2004

11 p.m. EST
Karis continues to get worse. They’ve moved from morphine to Fentanyl (50 times stronger than morphine); they’re not managing to get her to breathe well, not even with the help of the ventilator, so they’ve chosen to give her a dose of the paralyzing drug to see if she’ll rest better and get into sink with the ventilator rhythm. She’s exhausted so resting better should be good. We’re also emotionally pretty wrung out.

They did a new broncoscopy that confirmed the CMV virus as the major source of infection. They added a new medicine to fight the CMV and maintained all the old ones to fight anything else that could be around. She continues with fever. Her heart rate is around 146 a minute.

Things are not all black, but they’re getting darker. May God permit that the Morning Star shine in the midst of the darkening night.

5:00 a.m. EST
Good news and bad. Bad news is that the X-rays have come back worse with the pneumonia continuing to spread into both lungs. As a result they have increased the peep on the respirator to 10. The good news is that her fever has been in the 37s all night, which is the lowest it's been for 36 hours and Karis rested better last night, all of her numbers being a little better, in large part because they increased the morphine from 2.0 to 3.0.

Tuesday, Dec. 14, 2004

10 p.m. EST
Sent to us by Denyse and Greg Gripentrog:
Psalm 84 has long been one of my favorites . . . "They go from strength to strength, till each appears before God in Zion" (v. 7). It would be nice if the verse read and life reflected that "they go in continuous strength," but such is not the case. I'm in a "from strength to strength" time right now. Sometimes it's strength for an hour, then a gap (and a nap), then two hours later strength returns . . . Some day I will appear before God. I wonder if He may be more interested in how I trusted Him in my weak times than in what I accomplished for Him in my strong times.
--Dale Vander Veen

(Debbie) This certainly speaks to my situation just now (I like that part about a nap!), and I'm grateful for this encouragement.

Objectively, Karis is worse: the pneumonia is quickly spreading in both lungs now. Ventilator settings and sedation have been increased to try to help her breathe more effectively. High fever is practically continuous, little daunted by Tylenol and cool compresses.

The good news is that a causative organism has been identified, a virus that can be treated with medicine: Cytomegalovirus (CMV). Ganciclovir was started immediately, but will take 2-3 days to impact Karis' symptoms. The ICU and infectious diseases docs are not convinced that this virus accounts for the whole picture, so they are continuing antibiotics and an antifungal at least until Thursday evening, when results of the bronchoscopy cultures should be in.

6:00 a.m EST
(David) Karis is having more difficulties breathing. Yesterday morning the ventilator was just helping her complete breaths, not initiating breaths for her and she was getting 40% oxygen. At the end of the day, after the bronchoscopy, the peep (volume maintained in her lungs to help her breathe) was at 5, oxygen was at 57% and the respirator was taking 8 breaths a minute for her. Now (Tuesday morning) her peep is at 8, oxygen at 65% and 18 breathes a minute on the ventilator. The X-ray shows more liquid in her lungs. The fever continues, varying between 37.7 e 40.6 (105 Fahrenheit) and between 38.4 and 39 during the night.

She’s a little uncomfortable, so they gave her an extra dose of morphine and of ativan (another sedative) during the night. Yesterday afternoon and evening her heart rate was averaging 135-138 when no one was doing anything to her. This morning it’s around 145. Various times yesterday she moved her head a little or squeezed our hands to indicate that she could hear us; other times there was no indication at all.

Except for two hours in the afternoon, Debbie took a break from the hospital yesterday. She’s been there every day since August 25th except the three days Karis was home at the end of September and the two weeks she traveled to Brazil and Oklahoma. ICU especially has been pretty intense. I’m glad Dan and I are here to help out. :)

We still don’t know what is causing the fever. The bronchoscopy was unremarkable; we’ll see what the cultures will show over the next 24-48 hours. She has a new central line in her right femoral vein to accommodate 7 medications, 3 of them the anti-Legionella meds because apparently Legionella can lie dormant for awhile, giving negative cultures, and then reactivate. Karis’ white cells have still not kicked in. Normal would be 5-10; yesterday they fell from 2 to 1.8.

To summarize, she’s not doing very well, despite all the medications that she’s receiving. Please pray that some of these start taking effect today so that she can start getting better. Please pray also that she not suffer additional permanent damage to her lungs or to any other part of her body.

My feeling is that we lost a battle, but we have not lost the war. Our God is victorious and will have the victory once more. Sometimes it’s difficult to discern our part in this battle, but we know we need to persevere. “He who endures to the end shall be saved.” The Greek for “saved” means integral, complete healing, body, soul and spirit.

Monday, Dec. 13, 2004, 2:15 p.m. EST
(Debbie)
When we walk to the edge of all the light we have and take the step into the darkness of the unknown, we must believe that one of two things will happen. There will be something solid for us to stand on, or we will be taught to fly.
--Frank Outlaw (Sent to us by Stephen Carl)

David is at the hospital, giving me some time off (I enjoyed a walk in a lovely snowfall!), while Dan sleeps off night shift. I just talked with Dave by phone. Karis is sedated, though not deeply, and resting more comfortably (heart rate in the 130's instead of 160's). So far they have been able to use just morphine and Ativan, rather than going back to Fentanyl. They have figured out ventilator settings that seem to let her breathe more easily, without the agitation she experienced earlier today. Still no clue what organism has caused this pneumonia, so a bronchoscopy will be performed this afternoon. Fevers have continued.
Somewhat alarming (especially if the pneumonia is viral) is the fact that her white blood cell count is very low. We don't know whether this is an ongoing consequence of the profound immunosuppression she was
on. Two medications that could have contributed to this have been
changed. One was the medicine she was taking for the pain in her right foot, but that's probably not bothering her as much while she is sedated, and the other an antibiotic.

On a side note, an ENT resident came to investigate the hearing loss in Karis' right ear which has been troubling her ever since she woke up from the last long period of sedation. Apparently she has a buildup of fluid in her ear, which can be a consequence of being on a ventilator for a long time. The resident is consulting with a more experienced doctor about putting a tube in to drain the fluid. It would be WONDERFUL if this were to solve the problem, rather than it being a permanent hearing loss due to some of the medications she's been on. Karis also has a puzzling, somewhat ulcerated growth on the roof of her mouth which the ENT folks want to biopsy at some point. Karis had mentioned this earlier, but the ENT people must have been busy, or the communication mixed up, because they only came by today.

It's quite dismaying to see Karis back on the ventilator, after making such good progress toward leaving the ICU. Once again it all happened very fast: Saturday Karis sat up in a wheelchair for almost an hour, and had sat on the edge of her bed for 5 seconds without any support. We were talking about the rehabilitation program, and Karis' eagerness to get strong enough to walk again, and Karis proudly showed me that she could pull her left leg up from straight to bent while lying on her right side (we celebrate every little step of progress!). We won't know how serious this pneumonia is until the results of the cultures and bronchoscopy come back. Thank you VERY much for your prayers for her and for us.

Sunday, Dec 12th, 2004

7:00 pm EST
X-rays indicate Karis has a second pnemonia growing in one of her lungs. The doctors have removed some fluid from that lung and have sent it out for testing in order to determine what kind of pneumonia this is. Karis has been intubated again, sedated, and is attached to a breathing machine. Oxygen levels have gotten down in the 70s a couple times (very low), and she remains febrile. Let's pray that the Lord will extend His powerful hand and touch Karis again during this new crisis.

9:45 a.m. EST
(David) I’m in the States with Karis, having spent the afternoon yesterday with my sister, Kathy, at the airport before she left to return to her family. Dan stayed with Karis during the night and I’m at the hospital now while Deb goes to church. Karis really wants someone with her all the time.

Karis is much better, very conscious of pain in her right foot and her bedsore on her bottom, of feeling cold and of every sensation, being quick to express when something isn’t right. She can move her arms and hands, but needs help with any other major movement, be it to adjust her pillow, move her legs, move from one side to the other, drink a little water or any other detail.

She had a high fever the last two days and through the night, apparently a withdrawal symptom; but she’s without fever now. Pray with us that it doesn’t return since with fever her heartbeat was up in the 150s per minute and now it’s down to 128-130, still high, but much better! The Fentanyl which is 50 times stronger than morphine was stopped and now she’s on a fairly strong level of morphine to compensate. Sometimes she’s off in a world of her own, but if we took to her, she comes back into touch with reality. It may take as much as a week for her to get off of that since she was on heavy drugs for so long that it’s going to take a while to wean her. She’s having some difficulty hearing, but is real good in expressing herself, such as when she wants to change position, which is approximately every 20 minutes. This has to be done with great care so as not to cause pain in her foot or her bottom.

Her room in the ICU seems almost empty without the ventilator and the majority of pumps that she used to have. Now she has just 3 pumps for morphine, TPN (total parenteral nutrition) and IV liquids to keep her hydrated. She still has an oxygen tube that has two small outlets that fit into her nose and two tubes coming out of her stomach, one of which will be permanent (until after the new transplant, Lord-willing), so that she can drink liquids and have liquid “food” which almost immediately passes right through her and out the tube since she has no intestine.

She continues with some sleeping difficulties, but there is the possibility of her being released to a normal room on the seventh floor in the next few days. The rehabilitation hospital requires her to be without fever and with drugs for three days before they will accept her.

Karis has been working at thinking positively about the blessing of being alive and recovering rather than thinking about all she’s lost since the 4th of November when she went into the intentional coma. Pray that she can become firm in that perspective, at the same time as having liberty to express grief and sadness over her losses and the long recovery road ahead.

Valerie changed her flight from Dec 17th to Dec 21st so she could participate in our church’s Christmas program in Brazil, where she’s dancing with the choreography team on the 19th. Thanks be to God for two generous support partners who donated miles for Valerie and I to come to the States for Christmas. If there are more people out there with that kind of resource (on Northwest, Continental, Delta or United or their partners), we’re anticipate going back and forth a number of times in 2005 again).

My time in Brazil was excellent and very important in the three day retreat with my executive team, seven people who came from around the country to be together as we firm up plans for 2005. The three day retreat with our four missionary couples and one single was also excellent as they firmed up their commitment to raising support partners in Brazil, in spite of that being much more difficult to do than raise partners in the States. Lastly, I was able to work through the ministry budget for next year, needing to fire one and a half of my three person office staff because of lack of funds, talking that through with everyone involved and remanaging things to continue on the new footing in 2005.

At the same time it is VERY good to be back and see Karis’s eyes, hear her voice, talk with her, see her move her arms and hands at will. We’re on the right road, walking slowly, but with God’s help, we’ll see the victory of returning to the seventh floor, the next victory of going to the rehab hospital and the next victory of taking Karis back to our apartment. One step at a time, one day at a time.

Tomorrow I hope to put some pictures on the site so you can see her improvement. :)
Thanks for your prayers! :)

 

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