More updates ~ 6
	5 ~ updates on Karis

Friday, Nov. 11, 2005, 8:15 a.m.
(Debbie) Karis started feeling sick and having chills during the worship time last evening at the conference, so I took her to the ER. After 3 1/2 hours in the ER, they let us come home, but just called to say her cultures are positive so we're on the way back to the hospital. Karis is already talking about asking for a pass for the concert this evening!

Thurs., Nov. 10, 2005
(Debbie) We don't expect to be home much until Sat. afternoon. We're off to as much of the Hope and Future Conference as Karis can handle.

Blood tests from yesterday were incrementally worse, as they have been week to week. We're so grateful that Karis is feeling as well as she is.

Tuesday, Nov. 7, 2005
(Debbie)  Grieving for a family that lost their 18-month-old last night to graft-versus-host disease following multivisceral transplant, here's a song that fits my need today.  Yours too?

"Kyrie Eleison" (Lord, have mercy), by Nick and Anita Haigh (Daybreak Music, 2000)
Empty, broken, here I stand
Kyrie Eleison,
touch me with your healing hand
Kyrie Eleison.
Take my arrogance and pride
Kyrie Eleison,
wash me in your mercy's tide
Kyrie Eleison.

Kyrie Eleison, Christe Eleison, Kyrie Eleison.

When my faith has all but gone
give me strength to carry on.
When my dreams have turned to dust
in you, O Lord, I put my trust.

When my heart is cold as ice
your love speaks of sacrifice.
Love that sets the captive free
pour compassion down on me.

You're the voice that calms my fears.
You're the laughter, dries my tears.
You're my music, my refrain.
Help me sing your song again.

Humble heart of holiness,
kiss me with your tenderness.
Jesus, faithful friend and true,
all I am I give to you.

Kyrie Eleison, Christe Eleison, Kyrie Eleison.

Sat., Nov. 5, 2005
(Debbie) "In the day of trouble the Lord will keep me safe in his dwelling; he will hide me in the shelter of his tabernacle and set me high upon a rock." Psalm 27:5

A year ago, I sat in the ICU waiting room with Jonathan (our pastor) and planned Karis' funeral, because the doctors were giving us no hope that she would survive.

Today, Karis is at a retreat with her Three Nails friends.  Ever since she had those special prayer times on Sept. 4th and 8th, Karis has felt better and has had more energy than she has a right to, looking at her blood work.

A year ago, we experienced a miracle:  the person assigned to monitor Karis' blood cultures was the one person at Children's Hospital who could immediately recognize the Legionella bacteria.  Within minutes of that identification the doctors were able to switch her to the right antibiotics.  Then it was all about time:  keeping Karis alive long enough for the antibiotics to work.

Today, it's still all about time:  keeping the liver disease at bay and Karis strong until the right organs become available for her.

"I am still confident of this:  I will see the goodness of the Lord in the land of the living.  Wait for the Lord; be strong and take heart and wait for the Lord."  Psalm 27:13-14

My thoughts and prayers are with many who today face situations so much more difficult than ours.  May God give you His comfort, strength, and direction.

Sunday, October 30, 2005
(Debbie)  I have to tell you about God's faithfulness to us!  You'll see evidences of his kindness scattered all through this story.

As you know, we planned to leave Thursday morning with Carissa and her family for Glade Spring.  Wednesday afternoon, I noticed a bulge in one of my car's tires, and decided to drive over to Baum Blvd. Automotive to ask whether it was safe to drive on.  The kind gentleman at BBA told me it was a catastrophic rupture waiting to happen and not safe even to drive home on, and that the spare was not in good enough shape to be worth putting on, and that actually I should not invest another dime in that car.  Well, I'd already heard that, from another mechanic who had pronounced a death sentence on my beloved Max (a charming 1986 Nissan Maxima, gift from Alan Komm after Martha's death Nov. 2 a year ago, the first car I myself have ever owned!), saying Max will not pass inspection for licensing renewal because of severe rusting of the undercarriage (and that I should not invest one more dime in this car). 

I drove home from BBA, slowly, and called Alan for advice.  He reminded me that there were four tires belonging to the car stored in Battle's garage, and said I should take all four back to the shop, asking them to pick the best two to make do until I can find another car. (By the way, the anxiety I would normally feel at the thought of having to obtain a new car has been totally allayed by a generous gift from friends, who had no idea of our specific need.  Thank you so much, Jeff and Pat!!)  Battle helped me drag out and load up the four tires, and I trekked back to BBA only to find they were closing.  But they agreed to help me the next morning at 8:00 (we were scheduled to leave for Glade Spring at 10:00).

So at 8:00 there I was at BBA again, where they graciously performed the promised service and told me that both front tires were in such bad shape that we could have had a serious accident at freeway speeds.  And so that I wouldn't have to invest one more dime in that car, they kindly charged me $24.01 (no dimes involved!).  I was so grateful at the thought of avoiding a serious accident not just for us but for whomever happened to be around us on the highway that I would gladly have paid even more than that.  I thanked the gentlemen and went home, fast this time, to drag the leftover four tires back out of the trunk and into the garage, tote our necessary medical stuff, food, etc., down the three floors and into Max's spacious trunk, and hurry to meet our friends.  (Is it possible that God will give us another car with such generous trunk space??  Our friend Jill's wheelchair fits in it just perfectly!  Yeah, OK, I guess you can tell I'm grieving for Max. There's so much still good about this car!)

Carissa, her mom Sharon, her sister Faith and family (husband Ben and four wonderful kids, ages 7, 5, 3, and 7 mos.) were ready and waiting for us at McKee Family House when Karis and I finally got there half an hour late.  We loaded up and took off, and drove at least a block before someone remembered that Carissa's IV pole, that she was going to share with Karis, had been left behind.  So our caravan of three cars circled around through a series of one-way streets back to Family House and someone ran in for the pole.  We started off again and had gone about two blocks when someone noticed their car needed gas. (Thank God for cell phones!) 

While we were at the gas station we held a conference about some strange smells and noises Ben was noticing in his van, that he thought should be checked out before we hit the freeway.  Well, Max by now knew the way to BBA!  And the gentleman at BBA certainly knew Max.  I couldn't see the expression on his face when Max led our caravan of three into his parking lot, but I did see his expression when Ben, Sharon, and I trooped into the office.  "Are you sure you should make this trip?"  He agreed to check out Ben's van, so in came the four kids and their mom, and Karis went to sit in the car with Carissa while the rest of us raided BBA's hot chocolate machine.  To the mechanic's question of Ben, "Are you feeling lucky today?" I silently responded, "No, not lucky, just very grateful for God's good care of us and for your part in that," while the mechanic and Ben discussed their options.  We did make it to Glade Spring, where Carissa's dad met us and helped set a new record for the number of people sleeping there at one time (11).  We had a wonderful time, great weather, a happy birthday for Carissa (although the present she really wanted--her transplant call--didn't happen), and a safe trip home.  Carissa even drove her jeep while we were there--the first time she has driven in over two years!  The miles of track through the Glade Spring property were perfect for that.  Karis walked all the way around the little lake, while Carissa and Sharon found some chairs and a spot in the sun to enjoy the beauty of the colors reflected in the water.  The loveliness lingers in our memories to remind us of God's generosity and faithfulness, and help us to keep trusting Him for today, and for whatever tomorrow may bring.

With her permission, I want to share with you a song written last month by a friend at church, that has encouraged me.  To hear the lovely melody, I guess you'll have to come visit at Ascension, but I think you'll be blessed just by the words, for the transformation of judgment into mercy is at the heart of our faith. 

Mercy Seat, by Jennifer Bell
Knowing you, I never have to wonder if I will have the strength to carry through.
Sufficient is your grace to meet me in the moment,
and so I'll learn to keep my eyes on you.
Lord, let me follow you to the Mercy Seat.
Hear my cry to you in every heartbeat.
My simple prayer is not too poor a gift to lay before the Mercy Seat.

So here I'll stand, in all my joy and sorrow, here in all my confidence and shame.
I'll offer all I have, the whole and the broken,
and seal it by the promise in your Name.
Lord, I will follow you to the Mercy Seat.
I will cry to you in every heartbeat.
My simple prayer is not too poor a gift to lay before the Mercy Seat.

Thursday, Oct. 27, 2005
(Karis) Just wanted to let you, and all the folks who read the site, know that we'll be out of town for a couple of days.

We're taking Carissa and her family out to Glade Springs, Alan Komm's home in the woods a couple of hours from Pittsburgh. It's Carissa's birthday this Friday and we wanted to do something special together. We'll be back on Saturday evening, all things being equal. It's gotten downright frigid here and we're all looking forward to the trip, with the gorgeous Pennsylvania hills all colors of autumn, and the fireplace once we're there... much love, Karis

Thurs., Oct. 20, 2005, 10 a.m.
(Dan) I'm not in Pittsburgh at the moment, but Mom (Debbie) is pretty tired so I thought I'd go ahead and write an update myself.

Yesterday was a frustrating day. Karis' rash was itching was so badly the night before that she did not sleep, and the doctors refuse to allow her to take benadryl to relieve the itching unless she is hospitalized. The reason for this is that benadryl is metabolized in the liver, and her liver is not in good shape right now. So yesterday it was bad enough that Karis decided to go into the ER of her own volition (which probably means it felt like somone doused her in kerosene, lit her on fire, and then rubbed the smouldering flesh with poison ivy), where she sat for hours waiting for a series of doctors to make up their mind what to do with her. Eventually... they gave her some benadryl. This is the same thing that happened when I took her to the ER last time. You explain your situation to four different people, one at a time, and they all scratch their head, say they need to talk to someone else, and then eventually say they have no idea what to do -- so they do what you thought you needed in the first place. Then, they still wouldn't release her, because they said they needed to see her blood work, and then they gave her a magnesium run to correct a blood imbalance... although it took over an hour from the making of that decision to beginning its implementation, and then three hours to run. Overall, it was 11-12 hours of bliss in the flourescent-lit emergency room for a procedure she could have done at home. This isn't a strong incentive to visit the ER when one feels like one needs help.

Of course, to maintain perspective, we're very thankful that we have medical care, that we're out of the hospital most of the time, and that the doctors are cautious with Karis rather than just doing the simplest thing without careful consideration.

On the bright side, Karis is off both antibiotics and pain killers for the most part. On my last visit she was able to think clearly and sharply, to write legibly, to walk to the store with me, and to beat me in a wrestling match. Okay, all true except for that very last part (or is that just my pride?).

We hope the transplant comes soon, while she is relatively healthy, and not battling an infection.

Thurs., Oct. 13, 2005, 7 a.m.
(Debbie) Karis is fine; everyone is fine; I just haven't had time to update the web site or respond to e-mails--sorry. Busy taking Valerie to visit colleges around here and then get her off to Notre Dame for a couple of days before she returns to Brazil. Dan was here over the weekend; David arrived yesterday, and Rachel comes Saturday to spend her fall break with us. A friend has invited us to his country home so we'll be out of town until Sunday afternoon, hoping the rain stops so we can enjoy the foliage.

We're reaching the conclusion that Karis' rash is a reaction to the bile salts accumulating in her skin because of her liver damage. There doesn't seem to be much we can do about it except trying to relieve the itching. Today is her last day of Gentamicin and Vancomycin, so that will simplify life a lot. If she doesn't develop another line infection in the next couple of weeks after stopping the antibiotics we'll be very happy!

Sat. Oct. 8, 2005, 11 a.m.
(Debbie) Over the last couple of days Karis has been experiencing an allergic-type reaction to something, manifested in a red itchy rash, but it's not clear yet what she's reacting to. She spent several hours in the ER last night while they tried to figure it out (Dan took her, so I could get some sleep), and we've changed her Vanco infusion to daytime so I can keep a closer eye on her in case it's that. If it is the Vanco, we'll be losing our chief weapon in the fight against line infections.

Other than that, Karis is doing great--better than she has been for a long time. Her pancreas seems to be completely quiet right now. What a difference it makes not to have that intense pain, nausea and vomiting! Very nice that this is so while Valerie and Dan are visiting this weekend. Valerie is checking out colleges in the Pittsburgh area in case she's not accepted at Notre Dame, which is her first choice. Dan came from DC for the weekend so that he could spend time with her. Valerie leaves Tuesday for a few days at ND, staying with friends of Karis', before returning to Brazil next Friday just in time for the week-long Super Six soccer tournament, a highlight of her school year.

David plans to fly here the day after concluding the MAPI conference in Brasília, to spend a couple of weeks with us (except for a few days in Florida visiting his parents). He'll arrive Wed., the day after Valerie leaves, and then Rachel will come the next weekend, her fall break. What fun to have family here with us for awhile!

Tues., Oct. 4, 2005, 7 p.m.
(Debbie) Karis was released from the hospital this afternoon, with the help of our friend Alan, and shortly after we got home was taken for a massage by our friend Anna. I used the time to figure out her new medication schedule, learn how to administer the new drugs, and sort out the delivery from the pharmacy. We will now start morning meds at 5:45 a.m. and finish at 1:15 a.m., but it will be worth it if we can avoid another line infection and save the port. We haven't yet figured out a good solution to the itching from jaundice, but everything else seems to be under control.

For Karis' friends--in case it's helpful in planning visits or outings--Karis will now have two blocks of "free" time: 7 a.m.-3 p.m.
(with TPN running; she usually sleeps through this time but might be able to wake up for something really good! :) ), and 6 p.m.-10:30 p.m. (free from her pump & backpack; her most awake time of the day). The rest of the time it's really helpful for her to be home to do her meds, though of course she can receive phone calls.

Carissa was also released from the hospital yesterday! Hurrah! Both girls would love to stay OUT until they're called for transplant. That would be an amazing gift.

Artur is doing better, but Ashley is back in ICU on a ventilator. Please pray for both kids and for their families.

Mon., Oct. 3, 2005, 8 p.m.
(Debbie) Karis got a pass from the hospital and is out with friends. Her cultures were negative today, so the doctors have decided to leave well enough alone and not do anything with her port now. If they're still negative tomorrow, they'll let Karis come home. When/if she gets another infection, they'll reevaluate. She's had five episodes of infection in the last seven months.

Sunday, Oct. 2, 2005, 10:30 p.m.
(Debbie)  Karis encouraged me to go to the retreat even though she couldn't, and it was very refreshing for me.  I'm so glad that I was able to participate in this significant event in the life of the church.  The weather was gorgeous--perfect fall days; lovely to be out in the country.  I drove straight to the hospital from Laurelville, and a few minutes later the doctors walked in on rounds, so I was able to find out what they're thinking at this point. 

From what I understand, the lab report that was initially interpreted as a new organism growing in the blood culture, was clarified as the same bug growing a different way than normal, and apparently not responding to Vancomycin.  Two other antibiotics were added, and no change has been noted as yet.  But there has been time to straighten out some of Karis' blood chemistry.  Her potassium was too high and a few other things out of balance that are in a better place now.  Most significantly, her kidneys are functioning much better since they increased her daily fluids from 1 liter to 1 1/2 liters (in addition to her TPN).

The docs are reaching the conclusion that these repeated bouts of infection are really just episodes of one infection that hasn't been fully eradicated during all these months.  The bacteria have the capability of going into hibernation while antibiotics are threatening them, and then "wake up" later on when it's safe again (pretty smart for one-celled organisms, don't you think?) and that seems to be what has happened repeatedly over the last months.  The doctors think the mediport has to come out, but that decision will be made tomorrow in agreement with the infectious disease doctors.  The plan would be to insert a wire through the chest into the vein where the catheter is now, pull out the mediport under the arm, and then thread the new catheter over the wire.  That way they'll be sure to get the new catheter in place. If, as they suspect, the bacteria are colonizing the port itself, there will be less danger of contaminating the new catheter.  Karis will then have a Broviac catheter instead of a port, which she's not happy about, but it's become too costly to continue with these repeated episodes of infection. 

Please pray that good decisions will be made in the next day or so!  Thanks.

Karis enjoyed the beautiful weather with a long walk with Cole yesterday, and then enjoyed watching the Notre Dame football game (sorry if any of you out there are Purdue fans!), with all the fun gear she had received from the Health Center ladies--we laughed so hard while she was unpacking that box!  and laugh again every time we look at any of it (football necklaces???!!).  Karis was still wearing the Spirit shirt when I got back this afternoon.  (Here's what we're thinking of for the socks, Pat and everybody:  a different one on each foot, of the wildest colors, head down in bed under the covers with feet on pillow when the doctors come by on rounds.  What do you think--should she try it??!)

Today Karis was given a pass to attend the Three Nails Sunday gathering this evening, and really enjoyed it.  We have been so blessed with wonderful friends.

Friday, Sept. 30, 2005, 11 a.m.
(Debbie) In the middle of packing Karis' medical supplies to take on the church retreat this weekend, I just received a phone call from the hospital calling Karis back in. Something wierd is growing in her blood and they say she must be hospitalized. We are super disappointed about missing the retreat! Please pray that we'll still be able to attend at least part of it. Thanks!

Tues., Sept. 27, 2005
6:00 p.m.
(Debbie) . . . And we just got a call from the hospital saying Karis' cultures have turned positive. But, thank God, they're going to let her stay home as long as there's no fever. I think since it took this long to grow, it must be on its way out.

9 a.m.
(Debbie) I spoke too soon about Carissa. She spiked a high fever around midnight and is back in the hospital. Bummer!

Monday, Sept. 26, 2005
7:30 p.m.
(Debbie) Surprise--we're home!! They let Karis go once she completed a blood transfusion this afternoon. We'll complete antibiotic treatment at home. Hurrah!!

9 a.m.
(Debbie) Karis celebrated her first negative blood culture yesterday! I haven't heard yet whether it is still negative today. I'm staying home from the hospital this morning to catch up with a few things.

Karis has enjoyed several visitors, including Eudiscélia and Ricardo, here from Connecticut for a clinic check-up, and one all the way from ND who watched the second half of Saturday's football game with us (thanks for coming, Jen!). Timmy graced her room with flowers from Ascension's altar yesterday, and was thoughtful enough to bring extra vases so we could share them with our Brazilian friends. 19-month-old Ashley moved from ICU up to 7 North, right by Karis' room, last evening. Three-year-old Artur is down the hall. Please pray for both children and for their families. Artur is still running high fevers and no source has been identified yet. Ashley's mom and older sister have returned to the state of New York, where Josy has a job. Dad (João) currently doesn't have a job, so he's the one carrying on hospital duty. Artur's parents, Idário and Zoraia, are able to trade off the night shifts, but they are both exhausted. They have successfully placed big brother Vinícius (5) in kindergarten, where he's learning English and enjoying a change of pace from hanging around the hospital all the time.

I just realized that in the confusion of getting Karis IN to the hospital, I forgot to tell you that Carissa is OUT!--after a month of challenging hospital time. They still don't know whether the fungus has been completely eradicated, but are hopeful. As long as you're praying, please remember too our little friend Luke, who is fighting FOUR bacteria, some of them completely resistant to traditional antibiotics. His line has been pulled, and the challenge now will be to find a place to put another one. He's already severely limited with venous access and he's only four.

In his update last Thursday, Battle asked prayer that we could attend Ascension's annual retreat. I want to clarify that the retreat is this next weekend, starting Sept. 30, so we're still hopeful that we'll be able to attend in full.

Saturday, Sept. 24, 2005, 7 a.m.
(Debbie) Quotable quotes:
1. Dr. S, waxing eloquent, "And [a particular drug] has been found to be most effective on ducts . . ." Karis and Debbie look at each other, bewildered, and Karis mouths, "Quack quack? Why is he telling us about ducks?"

2. (Dr. S is solely responsible for all the transplant patients on 7 North and in ICU for several days while the rest of the team is out of town for a conference. Karis doesn't know this, since she slept through morning rounds.) Returning to 7 North from a knitting hour in the hospital library Friday evening, Karis sees Dr. S and says "What are you still doing here? Go home and play with your kids!" Dr. S: "Nah, I'd be bored at home. My wife is at a meeting and my kids are with a sitter, so I thought I'd hang out here. See, you, Karis, when you're bored, you knit, you do crossstitch, you learn Arabic. Me, when I'm bored, I just wander around the hospital and see people."

3. (Debbie comments to Dr. S about trying to read a 15-page chapter with
181 footnotes--every other word about five syllables long--in a huge volume called Transplantation of the Liver. Dr. S: "Aw, it's not too hard. You just stick stuff together."

Friday, Sept. 23, 2005, 8 a.m.
(Debbie) Even while Chewy was still here last weekend, Karis kind of crashed and cancelled plans Saturday, Sunday, and Monday morning just to stay in bed. Monday she was concerned about how weak she felt, and her daily weight showed a whole kilo down from the day before. She felt a little dehydrated, and since she had been throwing up a lot, Lynn (our nurse
coordinator) told us to go to the ER to check her out. She was there for several hours getting fluids and various tests, including a blood culture. From the pain and vomiting she had been experiencing we weren't surprised to see that the pancreatic enzyme numbers were up again. By the time we left the ER Monday, she was feeling much better; came home and slept the rest of the afternoon and then woke up and had a good evening.

Tues. morning we received a call saying we should return to the ER because Karis' blood culture had come back positive. They wanted to draw new cultures in case that one had been contaminated (giving a false positive), and then go ahead and start vancomycin. While we were there, the transplant doc called down and said he wanted to go ahead and admit Karis, but the ER docs supported us in arguing for going home until results of the new cultures came out, because Karis was so much better than she had been the day before. She didn't feel like she usually does when she's coming down with a line infection.

Wed. Karis felt OK and since we didn't receive a phone call, by evening we assumed that Monday's culture had indeed been contaminated and Tuesday's must be negative. That evening we almost went back to ER though because we couldn't get her D-tube to stop leaking. She had gone out with friends and came home with her clothes soaked; not a very happy situation. After working with it for awhile it seemed to have gotten back under control, so we went to bed. During the night though she joined me in my bed because hers was soaked. So we decided it would be a good idea to go to clinic Thurs. after all (which the transplant docs had requested, but we were resisting because Karis was feeling OK and had other things she wanted to do that day).

I called early Thurs. morning and was given a 2:15 clinic appointment. When we got there we waited for quite awhile, watching all the other kids getting called one by one, and finally when we were the only ones left in the waiting room, a nurse came out and told us that she wasn't going to be seen in clinic because she was being admitted to 7 North. Her room was ready and we were to go straight up there. What frustrated us, in addition to having to be hospitalized, was learning that they had known since early morning that the cultures were positive and rather than giving us a call to let us know, just said "Oh--they're coming in for clinic so we'll admit her then." We could have gone prepared, and without having to cancel other plans for the evening at the last minute.

What helped us get over feeling so frustrated about having to be in the hospital when the weather was so gorgeous outside and Karis not feeling sick, was discovering two Brazilian families, one on 7 North and the other still in ICU post-transplant but soon to move up to 7 North. One of the families in particular is going through a very rough time, and the mother speaks very little English. Perhaps we can be of some encouragement to them while Karis is there (which we hope will not be for very long, since this infection has been caught so early).

Good news is that the routine weekly blood work done on Wed. showed improvement in almost all of Karis' important numbers, so cutting out the lipids has apparently been helpful. That was very nice to see. And the pancreatitis seems to have calmed down again.

Thurs., Sept. 22, 2005
Battle writing) Debbie telephoned to say Karis was hospitalized Thursday afternoon with what looks like another catheter infection.  We now have two days running of positive blood cultures taken earlier in the week.  Karis was in for waiting for her weekly clinic appointment and the clinic staff came around and told her to just go on upstairs and check in and the regular hospital staff would be by.  Karis is disappointed since she is feeling OK and can usually tell when she has an infection by how poorly she feels.  She and Debbie have been hoping to attend our home church retreat next weekend and have been reading Eugene Peterson’s A Long Obedience In The Same Direction in preparation.  In addition to your prayers for Karis’ healing I am sure they would appreciate your prayers that they would be able to attend.

Thurs., Sept. 15, 2005, 6:30 p.m.
(Debbie) We just got home from a long day at the hospital, most of it just waiting: waiting for the ultrasound of Karis' veins, waiting to be called into clinic, waiting for the doctor once we were in the examination room, waiting for 3:00 meds to finish so we could go visit Carissa . . . and Karis waiting for me to find my parking ticket, which I had accidentally thrown away with some other papers from my purse. But we had a nice time talking, reading, and chatting with others who were also waiting.

The clinic visit was encouraging overall, because we understand things a little better and we were told that the transplant doctors had received two calls last week for Karis! Neither of them worked out, so they never got to the point of calling us, but it made us feel that this thing could actually happen--and that we better enjoy to the hilt these beautiful fall days, in case she is called "for real" sometime soon.

A number of people have asked whether we have noticed a change in Karis physically since the special prayer time a week ago. No--and yes! She is feeling better than she was, less draggy and with a little more energy, so she fully expected the blood tests from Wednesday to show an improvement. Since they did not, we believe it is God's grace that is allowing her to enjoy life a little more instead of spending almost all of it in bed. God's answer to our prayer on Thursday for healing of her liver up to this point seems to be no, but we are not discouraged. We have felt very strongly the presence of God with us.

If you're not interested in the more technical medical side, you can stop reading now. :) Dr. Soltys and Lynn, our nurse coordinator, explained a number of things to us at clinic:
1. How to understand the three bilirubin readings: the important ones for Karis' situation are the direct bilirubin, which has increased incrementally each week for the last two months and is now 13.9, and total bilirubin, now 15.4. The indirect bilirubin (1.5 now) isn't really relevant to her at this point, and the docs actually think that when it went high (10.2) a couple of weeks ago, it was because the nurse took too long getting it to the lab and wasn't an accurate reading. If you take that one out, including the total bili of 18 which was skewed because of the high indirect result, there's a pretty straight upward slope to all of Karis' liver function tests for the last several weeks, despite all the adjustments to her TPN. Eventually, if things continue as they have been, the indirect reading will go up also, but we're not there yet. (Normal values are total bili 0.1-1.2 and direct bili 0-0.4.)

2. Her triglycerides, which were "very high" last week, are even higher this week (735; normal is <150), so they've taken the lipids out of her TPN mix for the time being, which means, of course, a reduction in calories. It seems her liver is not doing a good job of metabolizing fats.

3. Karis' MELD score (Measure of End-stage Liver Disease), by which priority is decided by UNOS for liver transplants, is now in the low 30's (on a 6-40 scale), so Karis will be given high priority for organs both regionally and nationally (she already was at the top of the list locally).

That's it for now! Karis is enjoying a visit from Chewy, an ND friend, until Sunday. David is on his way back to Brazil from the Philippines. Please pray for his recovery from jet lag, because he'll have only one day at home before taking off for a conference in northeast Brazil.

Friday, September 9, 2005, 11 a.m.
(Debbie) The prayer time for Karis yesterday afternoon was wonderful. We are deeply grateful to each one who took the time to participate, whether present with us or from a distance. Thank you.

Wednesday, Sept. 7, 2005
3:30 p.m.
(Debbie) Prayer for Karis will be at 4:00 tomorrow afternoon here at the Browns' house. Please join us if you are free to do so.

11:00 a.m.
(Debbie)  Several people have asked lately whether Karis is on the transplant list, and whether she is recuperated enough to receive a transplant when organs become available.  The answer is YES to both questions:  she's been listed since May, and the sooner she is transplanted the better, since the TPN which is keeping her alive will cause progressively more severe liver damage, unless God intervenes.

I learned from the last UNOS (United Network for Organ Sharing) Update magazine that only 37% of American adults have signed up to be organ donors!  That helps me understand why the waiting time can be so long and so difficult.  Please help us and all of those on the waiting lists by checking the back of your own driver's license and encouraging all of your friends to sign theirs.

Think of it like this: each one of us is going to die.  The question is, whenever we do die, are we willing to share what is no longer useful to us but may be life-saving for another person?  It will cost us nothing, and one donor may save not just one but several lives.

Here are some facts that may help make the picture clearer:
        * 70% of those waiting for a five-organ transplant, like Karis, will die before organs become available for them.  Carissa, who has the same blood type as Karis, has been waiting since December and is now in critical condition in ICU.
        * As of today, 89,295 are on waiting lists for transplant in the US (for all types of transplant).  An average of 17 people on waiting lists die per day.
        * From January-June of 2005, 14,008 transplants (of all types) were performed in the US, thanks to 7,241 donors.  Nearly 12,000 people died who could have been donors.
        * 189 people are waiting for intestinal transplant in the US, but 17,384 are waiting for a liver.  Now that Karis needs a liver as well as intestine, her waiting situation is more complicated.  Karis waited 8 months last year for an intestine, but during that time she received 5 calls which didn't work out for one reason or another.  Since May this year, she has not received a single call, nor has Carissa who has been waiting 9 months.

You can find a lot more information on these three sites (among others):
        www.unos.org  (UNOS is the national organization that coordinates who gets which organs and keeps all of the information on people waiting for transplant in the whole country.)
        www.core.org  (CORE--Center for Organ Recovery and Education--is our local organ procurement organization, that does the work of obtaining the organs when UNOS chooses someone in our local area to be a recipient.)
        http://sti.upmc.com  (Thomas E. Starzl Transplantation Institute runs transplant programs at Children's and at Montefiore in Pittsburgh; world leader in transplantation and research.)

How the transplant process works:
When organs become available, they are first offered to people on waiting lists in the local area where the person died.  If no good match is found locally, the organs are then offered within the region (we are in Region 2), and then within the whole nation.  Karis was transplanted last year from someone who died in St. Louis, but she had previously received offers (that didn't work out) from other parts of the country as well as locally. 

If you have specific questions you'd like me to answer about how the transplant process works, please ask and if I don't know, I'll try to find out.  The sites listed above have FAQ links that are very helpful.

Tuesday, Sept. 6, 2005, 9 a.m.
(Debbie) PITTSBURGH-AREA FRIENDS: Continuing the prayer that was initiated on Sunday with her Three Nails friends, we're planning a prayer time for Karis this Thurs. afternoon, Sept. 8. If you're free and interested in participating, please call us for details.

Those who can't come, if you would like to participate long-distance, we would be honored. Karis is requesting prayer that God would slow or halt the progression of liver damage while she awaits transplant. Thank you.

Please keep praying for Carissa in her tough battle against fungal infection. Thanks.

Friday, Sept. 2, 2005, 8 a.m.
(Debbie)  Karis really wanted to know what to expect with her liver situation so asked Dr. Sindhi to explain it to her at clinic yesterday, and the picture isn't very pretty.  Karis says that even though it was hard to hear, she's glad to know.  They reduced the lipids a little bit more, but say that's the last adjustment they'll be able to make to her TPN since she's already losing about a pound per week.  They have her on three quarters of the normal amount of protein and can't go lower than that.  Ironic that the stuff that is keeping her alive is also killing her liver.  How grateful we are that until now Karis hasn't had liver problems, something that has always amazed the doctors.  The only "treatment" for her liver is transplant, because we can't stop the TPN.

Dr. Sindhi told Karis it's important for her to get out of bed and outside in the sunshine and get some exercise every day and not just be awake in the evening, so we'll be working on making that adjustment.  She has been waking up for a few hours around 7 p.m. and pretty much being in bed and out of it the rest of the time.  We reaffirmed again that the timing of the transplant is in God's hands and we have no option but to trust Him for that.

It was a gorgeous day here so we went for a walk after clinic and got to spend some time with Carissa's mom, Sharon.  Carissa seems to be doing better, though she's still in ICU.  They've been doing all kinds of tests to try to find the source of the fungus, but with no success so far.

A marvelous thing happened yesterday--PA Medical Assistance agreed to go retroactive three months from their start date, which was Dec. 8, so I think our financial woes may be over!  We've paid thousands of dollars of bills from August through November that "fell through the cracks" between Cigna and Medicaid, because we were told that they would only go retroactive to the date they received our Medicaid application, which was Nov. 29.  I kept thinking we must have reached the end of those bills, but they kept on coming.  Finally I was put in touch with a wonderful lawyer named Erin who didn't charge me for her help as long as it was just by phone, and she's the one who helped get this retroactive thing to go through.  I am so grateful!!

We did learn yesterday that the NMES device which has been recommended for treating Karis' leg and foot has been denied at the second level of appeal, but there are about five more levels so we're going to keep trying.  This is the only hope that has been offered to Karis for possibly getting some function back, so it's important enough to keep fighting for, and we'll appreciate your prayers that it may be approved.  Our application has been strongly supported by PT, pain service, and our transplant doctors, and hospital folks are handling the appeal, so we just need to pray.

"Be still before the Lord and wait patiently for him" (Ps. 37:7).

PS. We ask for your prayers for our Sepal teammate Ken Kudo who has just suffered a heart attack yesterday and is in ICU.  Thank you so much.

Thurs., Sept. 1, 2005, 7:30 a.m.
(Debbie)  I have just read a newspaper article about the total evacuation order for New Orleans and another about the bridge disaster in Iraq.  Following that I read Carissa's website and then Johnny's.  If we all could do nothing but pray today, it would be a day well spent.  I'd like to quote for you some of Carissa's site and then John's.

After telling about Carissa's fever spiking again, Sharon writes:
Last Sunday morning, my Pittsburgh pastor's sermon was from Matthew 20:29-34. The pastor emphasized that the blind men were shouting, "Lord, Son of David, have mercy on us!" When the crowd around them (including disciples) told them to be quiet, they just shouted louder, "Lord, Son of David, have mercy on us!" Jesus heard them and answered their prayer.
Based on that passage, I continue to plea for the Lord to have mercy on Carissa and have no reservations about asking you to pray likewise. If the Lord chooses to take her home to be with Him, I believe it will be to spare her of more suffering and I will thank Him. But until then...

Johnny (13) was told a couple of days ago that the tumors that he already had in his lungs are larger, and he has three new ones.  Here's what he says:
I’m pretty bummed. When Dad told me how bleak the situation is, I broke down and cried right there. I had suspected that something was up, but I hadn’t realized what our choices are. I know that what ever happens the outcome will be me going to heaven sooner or later. I know that God has a plan for my life and knows how many seconds I have left to live. But I have two sick choices: One, we could wage a "Holy War" against the cancer, hitting it with combined chemical and technological warfare (chemo and surgery). The problem is that we have already hit it with surgery and chemo and they didn’t seem to work. This choice will multiply the misery factor and probably won’t do anything but make me sick and miserable. The chance for cure is pretty bleak, only 20-30% of kids show "some response" to this treatment. Thankfully, we aren’t dependent on statistics. And that brings into light that we don’t have to do anything, I mean, everyone is going to die and I am not afraid of that. We could just back off, we already gave medicine a chance. We could just sit and wait on God for his timing. He might choose to keep me on the earth a little longer. I know he can. The second choice is a lot less painful but it also seems like it would be giving up. What if God wants to use medicine to heal me? If so, couldn’t he heal me without medicine? The old saying, "God parted the Red Sea, but that doesn’t mean we stop building bridges" echos in my head. I know that by doing nothing I would be trusting God completely, but would God want me to just wait around? I don’t like either choice. . . I am in such agony about what is happening, it would be so wonderful if God would just take this cup away. Thank you all for praying for me and lifting me up. Please continue pleading for me before the throne of heaven.
In Christ, (I am hanging on to him with both hands)
Johnny

Karis has clinic this afternoon and we hope for answers to questions that we have.  Karis' blood work just came in and her bili is 18, up from 14.5 last week.  But this morning she actually woke up before I did, and had the morning meds almost completely prepared when I walked into the kitchen!  Then she worked on Arabic for almost half an hour before falling asleep again.  That's the most early-morning energy I've seen since getting back from Brazil.

Wed., Aug. 31, 2005, 6:30 p.m.
(Debbie) Carissa's fever and blood pressure are under control, and antibiotics seem to be working. Praise God. The big concern is to locate the source of fungal infection which Carissa has been battling since last week, parallel to the present bacterial infection.

Wednesday is a wonderful day for Karis because she gets to take her once-a-week shower. Small things can give enormous pleasure!

Wed., Aug. 31, 2005, 6 a.m.
(Debbie) Carissa spiked a fever of 105.6 last evening and was taken to ICU at 10:30 p.m.

Tuesday, Aug. 30, 2005
(Debbie) URGENT: Pray for Carissa!! She's back in the hospital with a fever of 104.7. This is really scary. Pray for God's mercy on her life. Thank you.

Monday, Aug. 29, 2005
(Debbie)  Thanks to Carol, we've found Karis' cell phone!!!!  It should be back in service by the end of the day.      More ...

Saturday, August 27, 2005
Friends, Karis has lost her cell phone. Until she finds it again, to contact her use our house phone (412-362-7803) or my cell phone (574-339-1364). If you've called on her cell phone during the last couple of days, she hasn't received your message. We're still looking . . .

Friday, Aug. 26, 2005, 11:30 a.m.
(Debbie) Karis is OK, but very draggy and low on energy. I'm afraid this liver thing is getting to her. Her bili yesterday was 14.5.

Thursday, August 25, 2005
(Debbie) One year ago today, I woke up at 7:10 a.m. with a strong sense that God was telling me to go to church. I had never been to the 7:00 a.m. service before, and obviously would arrive very late. But the sense that I needed to go was so strong that I got up, dressed, and went to church. I slipped in just in time to hear the last line of Karen Woods' sermon: "Do not fear." Only God knew how fearful my heart was, after hearing about a boy who died during transplant surgery. Tina prayed with me, and I was able to turn that fear over to God, and receive His peace.

Three hours later, Karis was called for transplant.

That message from God, "Do not fear," became the rock that I clung to through the events of the next days, weeks, and months. It was God's mercy that I didn't know, at the time that I kissed Karis and watched her disappear through the doors into the operating suite, all that would come. You who so faithfully watched and waited and prayed with us through this last year may never know how important you have been to her and to us, holding us up through 249 days in hospital, 92 of those days in ICU, through those critical hours in early November when her life hung by a thread, through the trauma of waking up from coma to discover all that she had lost during those weeks on a respirator, the long hard days of recuperation, four line infections, the intense pain of pancreatitis, dealing with damage to her leg and foot, living with two big tubes hanging out of her tummy, losing most of her hair, not being able to eat, and now being a "golden girl" with jaundice and fatigue from TPN-induced irreversible liver damage.

But what we like to focus on is God's incredible grace to us through all of the ups and downs of this last year. A couple of days ago my dad said to me on the phone that he was just amazed at the friends God has given to us. He was referring particularly to the Browns and the Blechls, but heartily concurred with my observation that we have been incredibly supported by many, many friends. We have seen God's love and kindness dramatically revealed through the Body of Christ. God has supplied our financial needs in unbelievable ways. We have had friends to comfort and encourage and pray with us at every critical moment. God has granted Karis some very special experiences: sharing "senior week" with her friends at Notre Dame, a whole month in Brazil, a weekend with her brother in DC, those unique days with Dad taking care of her, and uncountable "smaller" blessings along the way. We are very, very grateful and our hearts are full of praise to God.

What happens next? We don't know, and I'm glad I don't know. The ONLY way to walk this journey is one day--sometimes, one hour or one minute--at a time, in absolute dependence on God's daily-renewed mercies. That hasn't changed, just because we know better than we did a year ago what scary kinds of things can happen post-transplant.

While I was in Brazil, I had the chance to discuss with Ted, who manages Karis' website, the idea of adding another link to the site, that we'll be calling "Worshiping God in the Desert." I don't know any more about the "why" all this has happened than I know what will be next. But I hope through this link to share a bit more about what I've been learning through this last year. Perhaps it can be a small encouragement to fellow-strugglers who deeply desire to honor God through challenging circumstances that stretch us farther than we've been stretched before. I want to keep that separate from news about Karis, to honor those who just want the "bottom line" about how she's doing. I'm grateful to Ted for the extra investment he's willing to make so this can happen. It's a way that I've thought of to "build an altar" to God. Ebenezer: "Thus far has the Lord helped us" (1 Sam. 7:12).

Monday, Aug. 22, 2005, 2:30 p.m.
(Debbie) Karis has been released to go home from the hospital in an hour or so when her TPN finishes infusing. We're hoping to first stop by to visit Carissa in the adjoining hospital Montefiore, where she's fighting a fungal line infection--very discouraging. We had a lovely weekend, attending two weddings on Saturday and enjoying a visit from Aunt Jan and cousins Nathan and Joel. Looking forward to getting out of the hospital!

Saturday, August 20, 2005
(David) Deb just called and said that she and Karis got passes to go to two wonderful weddings of Karis’s friends today.  One was inside Ascension and the other in a beautiful garden.  As Deb called a thunderstorm struck, so we’re all happy it didn’t hit earlier.  Barb left this afternoon and Deb’s sister, Janice, is arriving tonight with her two sons, Nathan and Joel.  They’ll leave tomorrow for Taylor in Indiana and then Wheaton (where Rachel will arrive Monday to begin her junior year at Wheaton College).

Karis is doing very well, having had two days of negative cultures.  If things continue as is, she should be released from the hospital on Monday.  We don’t have much details from the doctors since Deb hasn’t had a chance to talk with them since arriving Friday.  Barb shooed her off to bed at noon on Friday and the doctors hadn’t yet made their rounds.  Saturday, Deb and Karis were at the morning wedding when the docs came around, so it looks like connecting on details about Karis will need to wait until tomorrow (Sunday)

Karis’s pain continues to increase.  She moved from 10ml of Methadone every eight hours ten days ago to 12.5 and in the hospital went up to 15.

Wed., Aug. 17, 2005, 9 p.m.
(Debbie) Yesterday Karis spent part of the day in the ER and they wanted to admit her, but she talked the docs into letting her go back home. This morning, though, they called and said she didn't have that option anymore, because one of the blood cultures taken yesterday came back positive. She was admitted to 7 North around 1 p.m. today. Looks like she has another catheter infection. Bummer. We're already praying that she'll feel good enough to ask for a pass to attend her friends Emily and Dan's wedding on Saturday.

Please pray for our friend Barb Blechl who is staying with Karis these days so that David and I can have some overlap time at home in Brazil, which we are enjoying very much. Rachel and I both fly out tomorrow, she back to college at Wheaton, and I back to Pittsburgh. Barb is investing a whole week so that Dave and I can have two days together here.

Please pray too for our friend Joni whose little boy died last week.

Friday, August 12, 2005
(David) Yesterday we went to our biweekly medical check-up and the doctors took a good hour to talk with us, explaining in detail new challenges that are surfacing.  The principal issues are:
1.      Karis needs a new liver along with stomach, pancreas ane intestine.  Her liver is having problems.  Her biliruben is 12.9 which leaves her jaundiced and with yellow eyes.  Normal is 1.5 and they start worrying above 2.  Each week for 4 weeks those numbers have gone up, inspite of efforts to change the TPN formula to counteract that.  They understand that the liver is damaged, which is a normal consequence of someone only having TPN (total parenteral nutrition) and not eating.  To tell the truth, thorugh the years the doctors have been surprised that her liver has stayed healthy.

Positive consequences of this is that intestinal transplants that include livers have less rejection.  Negative consequences are that there is no option to take out the intestine if she has a major infection after transplant, since they can’t take out the liver and the liver would enter into rejection.  If there were a crisis like last november, she would die.

Good news.  In the past, 50% of those who had a second transplant died.  In the last two years at Childen’s Hospital the five people who’ve had a second transplant are all still alive; two of the three this last year didn’t have any rejection. 

2.      Karis’s pain is increasing.  They increased the level of Methadone to help with that.  Even so, this morning when Karis got her Methadone she immediately asked for another heavy pain medicine, Dilaudid. 

3.      Karis lost two quilos (4.4 pounds) in the last two weeks, since they’ve diminished the calories in her parenterl feeding to help the liver.  She’s at 46.6 kilos today.  Normal for someone of her height is between 43 and 57; the docs have always wanted her at 50 so have some reserve if she runs into problems.  However, they’re willing for her to lose more if that will help protect the liver.

Good news.  Karis had wonderful days with her friend, Ki, who visited from Friday to Wednesday morning.  They went out a lot, talked a lot, made puzzles, watched movies, and discussed theology.  It was great to have someone her own age to hang around with.  Last night (Thursday), Karis read for almost an hour, which was fantastic for her.  She’s really happy with her ability to concentrate as she reads.  In comparison, her friend Carissa is so weak that she can’t concentrate enough for someone to read a book to her. 

Other good news: I’m getting good at being "Mr. Mom" and doing laundry, shopping and the 1001 things Mom’s do, as well as becoming fantastic as a nurse!  :)  Thank goodness, Deb prepared eight meal simple meal choices before traveling, so we’ve been doing well following the instructions she left us.  :)

Prayer requests
1.      That I can pass the baton well to Barb Blechl, our nurse friend, in between Saturday evening and Monday afternoon when I start my return trip to Brazil; and that Barb will be blessed, not having any problems before Deb returns on Friday, four day later.
2.      That our time as a family in Brazil from Tuesday to Thursday would be special, when Deb and Rachel leave for the States (Pittsburgh and Wheaton respectively).
3.      That the transplant would happen soon, but even more importantly that it be exactly the right organs so that there wouldn’t be rejection.
4.      That God would bring the right organs soon to our friend Carrissa, 26 years old, who lost another pound since we last saw her, down to 30.5 kilos and who discovered this week that she also needs a liver transplant along with the same organs Karis needs.  Her state is moving toward critical.
5.      Praise God for the tremendous help Rachel has given me in recreating our MAPI site and pray that I would be able to find the time and the help to continue this project upon her return to the U.S.  In about a week, you’ll be able to see a good part of our ministry on our site in English!!!  :)

I read 1 Th 5.16-18 today.  "Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus."  The key, I think, to living this way is to have spiritual eyes to see the presence, power and purposes of God in the midst of our circumstances.  Thanks again for walking with us!  :)

Saturday, August 6, 2005
(David)  I think somebody should give me a nursing certificate since I’m getting so good at taking care of Karis!  Eight days ago Deb left to be with Valerie and Rachel in São Paulo and we here in Pittsburgh are doing just fine, thanks be to God!  The daily administration of medications takes about 4-5 hours, plus other things around that (medical problems that come up, hospital visits, walking together to get the exercise Karis needs), take another couple hours a day.  The days fly by, especially with visits from friends, phone conversations, invitations to meals or going out to a church service or small group Bible study.  Karis is walking a mile and a half now without problems.  :)

Deb left a week ago Friday (July 28th) for Brazil, but the airport controllers in Newark lost control and all flights were grounded for about two hours, causing her to not be able to fly out of Pittsburgh to catch her flight.  Coming back home, the airport bus ran out of gas!  But she finally got off the next day and arrived fine Sunday morning.  Here we’ve had our normal adventures such as on Monday when nothing would come out of Karis’s G-tube drain.  I tried irrigating it, flushing water up into her stomach and it would go up fine; it just wouldn’t come back!  She got more and more distended and we got worried.  When I finally got to talk to the nursing coordinator at Children’s, I discovered a truly earth-shaking monumental medical breakthrough for solving the problem: Diet Sprite!  Can you imagine?  I bought 24 cans since I was told it would be good for her to have some daily to dissolve stuff that sticks to the stomach walls and sides of the tube.  Within a few minutes of taking the Diet Sprite everything was functioning normally.  Alleluia!  (Now if I could only solve my problems in the same way!)  :)

We’ve had other moments or hours of being worried along the way, but nothing that’s required us to go to the emergency room yet.  Karis has slept a lot more than is normal for her, about 14-15 hours a day, but yesterday and today she’s been up a lot more, so our concerns are passing.  They doing tests on her liver since it’s not working well and her eyes are a little yellow.  We’ll get the results of that Thursday when we have our weekly clinic appointment at the hospital.

Karis’s friends from Notre Dame, Vera and Jennifer, who were here in June and July left a week ago and so it’s just been Karis and me.  Another friend from college, Kyle, arrived yesterday and will stay until Wednesday.  Karis is enjoying having someone to go out with whenever she wants and to talk with whenever she wants.  She visited her French class this morning for the first time since August when she had the transplant.  She’s talking about visiting the mosque and her Muslim friends where she took classes last summer to learn more about Islam.  She’s been reading the Koran regularly.  Several nights this week, Karis left with some friends and came back about 11 p.m., late for her evening meds, but happy to have had good times with her friends. 

We are embracing the adventure Aslan has for us in the unpredictability of each day while we wait for the unknown day of the new transplant.  Deb is enjoying her little girls (ha!  Seventeen and twenty to be exact!).  You’ll have a hard time believing this, but she actually misses Karis and me! :)

I leave Pittsburgh August 15th to have two days with Deb and Rachel before they return to the U.S. on the evening of the 18th.  One of the biggst presents we’ve received from God this year has been Barb Blechl’s offer to stay with Karis for a week, taking care of her during the time that Deb and I won’t be around.  Barb is a nurse, wife of Jim Blechl who is Karis’s doctor when she’s in college and like a second mother to Karis.  So we are all extremely grateful for her help and support through Friday the 19th when Deb gets back.

Thanks for your prayers and loving support in these period of yet new experiences of what it means to be waiting on the Lord.

Friday, July 29, 2005, 8 a.m.
(Debbie) Well, here's one more quick report before I go pack my suitcase. The docs are quite concerned about Karis' liver--her liver function tests are all high; bili is 7. Guess I had gotten used to her looking a bit yellow and I do think she's less so than she was--but other people are starting to comment on it so maybe the jaundice isn't as resolved as I thought. Changes were made in her TPN, reducing it to 8 hours instead of 10, which required a complete overhaul of her medication schedule and reworking of David's manual.

Karis is to have a liver ultrasound next week. They're going to wait a couple of weeks to see whether her liver responds positively to the TPN changes before doing a liver biopsy, in the hope that it won't be needed. Next Friday she will have her femoral line pulled and go back to using her mediport.

Otherwise all is well. Please keep praying for Carissa. Our love to you all.

Wednesday, July 27, 2005
(Debbie) This may be the last update I write for awhile, since our plan is for me to leave for Brazil on Friday to spend some time with Valerie and Rachel. Vera also leaves us Friday, and Jen on Saturday. We will miss them! It will be just David and Karis here for awhile, as far as we know.

David is doing a great job with Karis' medications, carefully following the manual I've written up for him, though he finds the bedtime set challenging. Those who know him will not be surprised--he's an early-morning person and finds anything after 10 p.m. difficult. Yesterday Karis completed the Vancomycin treatment of her line infection, so hurrah, no more midnight or 6 a.m. meds!

We had a lovely weekend visiting Dan in DC. I'm so glad we got to see a bit of his life there. Karis did really well. Changes were made last week in her TPN formula to be easier on her liver, and in the days since she's lost the yellow cast to her eyes, which is lovely to see. I expect today's blood tests will be much better. She's enjoying exercising with a huge purple ball her Aunt Linda gave her, reading several books (she completed her first whole book since waking up from coma, a biography of Amy Carmichael, a couple of weeks ago--a wonderful victory!), working on Arabic, spending time with friends.

A friend here will be having cancer surgery on Friday. Please pray for her, and for Carissa, who is still awaiting her transplant. Thank you.

Thursday, July 21, 2005, 11 a.m.
(Debbie) Happy Birthday, Abuelita!

It's lovely to see Karis feeling better and with energy to do things. Yesterday her plan was:
8:00-9:30 morning meds; devotions
9:30 Visit with Anna
11:30 Weekly blood draw and short nap
1:30 Visit Carissa
3:00-4:30 Physical Therapy at the hospital Afternoon meds in the car on the way to Water Works shopping center
5:00 Meet Jill and Lauren at the shopping center
6:00 Benadryl and start Vanco in the car in the Water Works parking lot
7:00 Three Nails small group at Ren's house
10:00 Bedtime meds
11:30 Sleep

Well, she actually managed to pull off most of that plan! Only hitch was that late morning she needed Dilaudid for tummy pain that wasn't managed by earlier Oxyfast, so once she was more comfortable her short nap turned into a longer nap and I was barely able to pull her out of bed in time for PT, so she missed her hoped-for visit with Carissa. Maybe today, after clinic. Karis has been terribly thirsty, so I won't be surprised if something is a little bit off with her electrolytes, maybe sodium too high. We'll find out this afternoon. Of course drinking water doesn't really help her thirst, since it runs right out into her drainage bag, but it sure feels good on her mouth and throat, and she often comments on how WONDERFUL it is to be able to drink.

Saturday, July 16, 2005, 9 a.m.
(Debbie) Karis is doing well. The only concern at her clinic visit Thursday was a trend upward of her liver function tests. She will be having a liver scan next week, and they are considering changes in her TPN formula, but any changes they would make would reduce the calories, which they are reluctant to do right now.

We had the treat of a visit from Eudiscélia and Ricardo, here for a checkup. Ricardo has been struggling with pneumonia and asthma and doesn't seem interested at all in learning to eat, so those would be prayer requests for him.

David is working hard on learning how to do Karis' home care, with the goal that I go home to Brazil to spend a couple of weeks with Valerie and Rachel. He's doing well with some fairly complex procedures!

Rachel and Valerie should be completing a week of Promifé today in a city called Bebedouro. We look forward to renewed contact with them, and have plans to visit Dan in DC next weekend. Karis is allowed to travel four hours from Pittsburgh, so DC is right at the limit.

Tuesday, July 12, 2005, 11 a.m.
(Debbie) It's so wonderful to be home!!!!! It took all day, but we finally got out of the hospital yesterday evening. David arrived from Brazil mid-day--what great timing! Over the weekend we enjoyed visits from two ND friends (Rachael and Jen), and my sister Linda and nephew Mike. The beds at Carol and Battle's have been much appreciated!

We're home continuing antibiotic and pain therapy as we were doing in the hospital, with the mediport devoted exclusively to antibiotics and using the temporary femoral line for everything else. Karis is feeling a lot better since her baseline pain medication, Methadone, was increased to 15 mg three times a day. She's had less need for Dilaudid since that change was made. The CT scan on Friday showed inflammation in the pancreas and everything else in order, so they cancelled the endoscopy that was scheduled for yesterday, feeling that the pancreatitis theory explains Karis' pain.

There's lots to do getting reorganized here at home, so I won't write more now. Rejoice with us!

Sunday, July 10, 2005, 5:00 p.m.
(Debbie) Wonderful news: Karis is going home tomorrow! More specifics later . . .

Thursday, July 7, 2005, 9:00 p.m.
(Debbie) Today has been another difficult pain day--guess I spoke too soon about the Fentanyl lollipops, because last night and today they didn't seem to help and Karis finally had to resort to Dilaudid again. She just lay curled up in bed with hot packs on her tummy listening to the awful reports from London until she finally got Dilaudid late afternoon. Then she was able to do PT, and then wanted to walk outside. We had a little adventure: Karis walked all the way to the Cathedral of Learning, then sat by the fountain for awhile and then decided she wanted to walk to the Phipps Conservatory outdoor garden, which is a fair piece further on. By the time we got to the library, though, she was tired and starting to feel a lot of pain and not sure she could make it back to the hospital. Two police cars were parked by the library and I asked one of the officers whether he could help us. He graciously drove us back to the hospital, so we got to experience riding in a police car. That was our little adventure for the day! Emily came to visit, and she and Vera took Karis for a ride in a wheelchair, which was a nice way to end the day. (By the way, Gorniks, we think London is now the safest place in the world, since it's already been hit . . . but we've been thinking about you all day.)

Definition of a few terms:
--TPN: Total Parenteral Nutrition. Parenteral means given directly into the blood stream, completely bypassing the stomach and intestines. (Enteral means nutrition given directly into the stomach or intestines, through a feeding tube; oral means through the mouth and
swallowed.)
--hyperal: short for hyperalimentation, another term used for TPN.
--catheter: a large IV line, inserted into one of the major veins leading to the vena cava and into the heart. Also called a central line or central catheter. A central line is necessary for TPN, which is very caustic and needs high volume blood flow to not burn out the veins. Central lines are also used for chemotherapy for cancer patients. There are many different kinds of catheters.
--major veins: The largest veins of the body, the superior and inferior vena cavas, which lead to the heart, are accessed by way of one of six other major veins, four above the heart (the jugulars and the subclavians) and two below (the femorals). In Karis' case, four of the six (the two jugulars, the right subclavian, and the left femoral) are obstructed and no longer usable for access to the vena cavas and the heart. Karis' infected mediport is in the left subclavian, and the fear is that if they remove this catheter,to resolve the infection, they may not be able to get another line back in. The right femoral is now occupied by a temporary catheter, as you know, so how many options does that leave? The transplant team doesn't count the femorals anyway, because they tend to get infected so easily. Karis can't eat; she must have TPN, and TPN requires a functioning central line. You can see why we're concerned! And why we're asking that you help us with your prayers!
--mediport: the type of central line Karis has now, with a port that is underneath her skin under her arm that is accessed with an L-shaped needle which is then attached to IV tubing. This needle is usually changed once a week, and usually that's when Karis gets to take a shower: after the old needle is removed and before the new one is inserted. (We took the needle out so she could swim in the ocean when we were in Brazil, and reaccessed
afterward.) With the temporary femoral catheter, though, she can't shower or swim at all, so she'll have to wait until that catheter is removed to enjoy her next one. (Don't worry--she can, of course, take sponge baths--or as she calls them, spit baths. :) )

To clarify this just a little more: It doesn't matter how many other smaller veins may still be open, since the major ones are obstructed and the catheter needs to pass through one of those to get to one of the vena cavas and then to the heart. Think of a city with six highways leading into it. Wherever you're coming from, you need to travel through one of those six highways to get to the city. There isn't any other way to get there.

Running out of access: term used to describe the above problem; a big concern common to intestinal transplant patients who depend on TPN.

Is this helpful? Please ask questions so that I can communicate better!

Wednesday., July 6, 2005, 11:00 p.m.
(Debbie) Karis had a temporary central line inserted in the femoral vein in her right leg today which is now being used for TPN, fluids, and other medications so that the mediport can be bathed 24 hours/day in antibiotics. They weren't able to thread it up as high as they wanted, but did get it into an area of high blood flow in the inferior vena cava that should be adequate for the TPN. They told Karis that the femoral vein in her left leg is obstructed. (That's the vein that was used for an extra catheter when she was in the ICU all of those weeks.) That was a surprise, since the ultrasound on Saturday seemed to show that it was open. We're even more concerned now about licking this infection and saving her mediport.

Karis is having some success in the pain department with fentanyl lollipops. Apparently it's been long enough off of fentanyl that her body is responding better than it was when she was weaned off a few months ago. She has still needed some Dilaudid but not nearly as much as she was using.

Monday, July 4, 2005, 2:30 p.m.
(Debbie) Once again we got excited this morning when we were told that Karis' blood culture from July 2 was still negative--but the infectious disease doctor just came by and told us that it has now turned positive. Very disappointing. We were told also that tomorrow, or as soon as possible, they are going to insert a temporary catheter in one of Karis'
femoral arteries, probably left leg, to use for everything IV except antibiotics. Perhaps that will be what it takes to lick this thing.

Yesterday was a very hard day for Karis because her pain level got out of control. They decided to start a peripheral IV so that she could have Dilaudid again, and after a couple of 3 mg doses and then 2 mg every 2 hours she's feeling much more comfortable. (This is enough to lay any of us out flat, but Karis' body has gotten used to the medication to the point that she needs higher and higher doses to have the same effect.) The discouraging thing is that we still haven't solved the problem of getting her off of IV narcotics. The doctors don't want her to be taking Dilaudid through her catheter once we go home and won't allow her to go home with a peripheral IV. I guess we have at least three more days now to work on this one, since we're back to zero in attaining three negative blood cultures so she can go home . . .

It was wonderful to have Hannah here this weekend. She and Vera essentially gave me the weekend off, and I really appreciated time on Saturday to have sort of a retreat with God, a very renewing and encouraging time for me.

THANK YOU for your prayers for Karis to conquer this line infection!!

Saturday, July 2, 2005, 2:00 p.m.
(Debbie) Our normally optimistic Dr. Soltys seemed a bit worried yesterday about this stubborn line infection (eleven days now), and requested that the pain team figure out some way to deal with Karis' pain either through her G-tube or with lollipops or patches so that the nurses wouldn't be breaking into her line every two or three hours with IV painkillers. They're working with various medicines and trying to figure out a combination that works, but the transition has been hard for Karis. Her IV schedule has been worked around now so that she has the antibiotic lock for five hours/day, from 5:00 p.m. until 10:00 p.m., which is the longest period possible for her. She receives TPN from 10 p.m. until 8 a.m., then some medications that must be given separately, and then fluids from 9 a.m. until 5 p.m., when Vancomycin is sealed into her catheter. Please pray that the 3 antibiotics she is receiving will effectively kill the bacteria that persist in her line!

The nice thing is that if she's feeling well enough, she can leave the hospital on a pass while she's off IV's between 5 and 10 p.m. Last night Hannah, Veronica, and I took her and a picnic up Mount Washington, with its lovely view of Pittsburgh. We watched the boats on the river, the sky change as the sun set, and the lights start coming on in the city spread out below us. (Very refreshing, since in Karis' new hospital room she doesn't even have a window.) Then the girls walked around Point State Park until time to take Karis back to the hospital. Tonight we plan to attend Ascension's Saturday evening service, since she won't be able to go tomorrow morning.

Thursday, June 30, 2005, 6:00 p.m.
(Debbie) This morning we were told the good news that Karis had a negative blood culture, and we were getting excited about going home. However, Dr. Soltys just came and burst our bubble: the culture that was negative has started growing the same coag negative staph that we've been fighting for over a week now. Dr. Soltys consulted with the Infectious Diseases doctors and they've decided to add a third antibiotic, Rifampin, to the Vancomycin and Gentamycin Karis is already receiving. Rifampin is very pretty--it looks like cherry cordial. She's just starting her first dose now. So, we'll be spending the holiday weekend in the hospital. Karis and Vera's friend Hannah is coming to visit, and I'm sure they'll figure out how to have fun anyway.

What's been hard about the last couple of days has been very intense tummy pain, which seems to be the pancreatitis kicking in harder. The pain team is trying an experiment with a medication called Ketamine, usually used for anesthesia, which in a much lower dose they hope will help deal with Karis'
pain and reduce her need for narcotics. She's now had 24 hours on this new medicine but it's too soon to tell yet whether it does or will help or whether they've hit the right dosage (it's given through the G-tube so we're not sure how much she absorbs). The docs say it's likely Karis will have to deal with severe pain until she has her transplant, so we're very interested in finding something effective that is not a narcotic, if that is possible.

We've enjoyed lovely visits in the last couple of days from Carrie, Jill, Tina, Sharon and Carissa, and Alan, as well as Vera coming every evening after work. The big surprise was getting a call from the desk downstairs saying Peter and Sharon were here. They live in western Illinois and we had no idea they were in Pennsylvania! They spent a couple of hours with us and then continued their journey westward. We're expecting my sister Linda to arrive here anytime now for an overnight visit. It's always delightful when Pittsburgh "happens" or is planned to be on the way to or from somewhere for someone we love.

Monday, June 27, 2005, 3:00 p.m.
(Debbie) Blood cultures are still positive so Karis continues inpatient, but she went home on a pass this morning to make a birthday cake for Vera. Very fun!

I've been wanting to give you an update on friends for whom we have asked
prayer:

Vijay is not suffering anymore. God welcomed him Home on June 16, five days before his 53rd birthday. Pray for his wife, my friend Susy, and three children.

Johnny's cancer has spread into both lungs. Surgery has just been delayed for a month in case more nodules grow during that time, so that they can all be removed at once.

Carissa is out of the hospital and recuperating well from the surgery on June 14 to remove her intestines. Pray that she can start gaining weight and get strong enough for transplant.

Luke (4 years old) is back home after an abdominal surgery while we were in Brazil. Pray that he can get off TPN so that transplant can be delayed.

We are grieving the death of Louie, a 4-year-old who was in the room next to Karis' during her last hospitalization. He died while we were in Brazil. He used to lie in his crib and call, "Karis, Karis" until she would go stand in his doorway and talk to him.

Ricardo is home in Connecticut after a month in the Yale hospital with pneumonia and asthma.

Of course we can't tell you about all of the wonderful children and courageous families we get to know here at the hospital. Today we met Artur, another little boy from Brazil, here for liver transplant. His mom doesn't speak any English. What fun to speak Portuguese again!

THANK YOU for your prayers and friendship! They are precious to us.

Sunday, June 26, 2005, 7:30 p.m.
(Debbie) Lovely outdoor wedding this morning--I'm so glad Karis could go! We were due back at the hospital at 12:30, and had a quiet afternoon with Vera and Elizabeth. I checked to see how long we waited for negative blood cultures the last time, and it was 9 days, so we'll try not to be too impatient if this takes awhile, but we would LOVE to get out of the hospital!

Friday, June 24, 2005, 11:30 p.m.
(Debbie) Karis has felt progressively better through the day today and has had no more fever. There is a new (to us) physical therapist at the hospital who gave her a challenging workout this afternoon which made her happy, even though she may have sore muscles tomorrow. He has ideas for helping her foot and leg, if we can get more physical therapy sessions approved by insurance.

We hoped the doctors would let Karis out of the hospital to continue antibiotic therapy at home, but they say they can't legally do that until she has negative blood cultures. We don't know how long that may take. But they are going to let her out on a pass for a "chopping party"
(of fruits and vegetables) at our house tomorrow to help Megan get ready for her wedding reception, and give her another pass for the wedding on Sunday morning. We're happy she won't miss all of the weekend fun! Vera is spending the night at the hospital with her tonight, so I will be spoiled by a good night's sleep.

David and Rachel are back home with Valerie in São Paulo from their good trip to Colombia. They just learned today that Karis is in the hospital with a line infection. David travels again next week, to southern Brazil, but at least through the weekend communication will be easier.

Thursday, June 23, 2005
11 p.m.
(Debbie) We were told late this evening that Karis' blood culture is positive for gram positive cocci; apparently she does have a line infection. We'll find out what the doctors' plan is when they round tomorrow morning. Vera and Elizabeth have been wonderful company for Karis this evening.

12:00 noon
(Debbie) I came home from the hospital to get a few things for Karis and thought I would let you know the little we know, which is just continued pain and fever and overall yucks. Turned out good that we went to the ER last night. Karis was a little dehydrated and once again her blood pressure bottomed out (77/39) but they stabilized her in the ER and she was admitted to 7 North a little before 5:00 a.m. The doctor said that if we had been at home she would have passed out and the situation would have been serious by the time we could get her to the hospital. We're just waiting now on blood culture results, still hoping this is just a virus and we can go home soon. Karis' friend Megan is getting married this weekend, and her cousin Elizabeth arrives from Florida today, so Karis is very anxious to be well enough to go home and not miss out on all the fun.

10:00 a.m.
(Vera) Karis still has a slight fever, and sounded tired, but okay, when I spoke to her about 15 minutes ago. Debbie tells me that during the night, while they were still in ER, Karis' blood pressure bottomed out, and she was almost sent to ICU, but they were able to stabilize it befroe that became necessary. She was moved to 7 North at 5:00 this morning. They're still waiting to hear about the blood culture results...

Wednesday. June 22, 2005
10:30 p.m.
(Battle) Karis left home for the hospital with a fever of 102.9 F about 10:30 pm EST.  Karis is hoping it is a cold, but Debbie says the fever is too high for that.  Also I know that there are no rooms on 7 North on the transplant floor and she will have to be admitted through the emergency room as a result.  Debbie asked that you post this on the web site and ask for prayer.
9 p.m.
(Debbie) Karis hasn't felt well all day and is now having chills and a bit feverish. Of course we immediately worry about a line infection. Appreciate your prayers for her! Thanks.

Saturday, June 18, 2005, 7:30 p.m.
(Debbie) We're safely back in Pittsburgh. Amazing how one can walk in the door of an airplane and walk out a few hours later to find an entirely different world. The trip went well, although every single seat on both flights was full and there was no way for Karis to put her feet up. Her feet and legs swelled up so much we couldn't get her brace on when the plane landed in Houston, and still can't. She's walking by dragging her foot, or carefully lifting it up high enough to set down without tripping. It was such a lovely day that we went for a walk in Frick Park today anyway, with Veronica (Vera) helping on one side and I on the other.

Have we told you about Vera? She's a dear friend from ND whom Karis had hoped to live with her last year of college (Vera's in a 5-year architecture program so didn't graduate with the rest of Karis' classmates). Since it's not working out for Karis to return to ND this fall, Vera decided to come live here with us this summer! She has an architecture internship in downtown Pittsburgh that started the beginning of June, while we were still in Brazil. Vera's presence here gave Karis something wonderful to come back to, which was very helpful since it was so hard for us to leave our family and friends in Brazil and return to the transplant "waiting game."

Our friend Timmy picked us up from the airport; my sister Shari and her family came to visit for a few hours and brought dinner (we overlapped by one day with a two-week visit they made to the Pittsburgh area--they returned to Tallahassee this morning), and shortly after Vera arrived home from work. How wonderful to come back to friends and to this lovely home. Today Karis and I both slept off and on until about 3 in the afternoon, recovering from our night on the plane. Battle and Carol are traveling this weekend but we look forward to seeing them when they get back tomorrow night, as well as returning to worship at Ascension tomorrow morning.

Karis has a clinic visit scheduled for Monday morning at Children's. We hope the doctors will have some clues to what may be causing Karis' abdominal pain, which continues unabated. (We chose not to do exams in this regard in Brazil, since we would have had to pay for them out of pocket.) We also hope to visit Carissa, since she's in a hospital right next door to Children's.

To clarify some questions we have been receiving: Yes, Karis has been back on the transplant list since May. The doctors prefer not to actually do the transplant until July or later, but they want her at or near the top of the list in her category by the time they think she'll be ready for the surgery. We'll be going back to carrying our cell phones around with us wherever we go, since the call could come at any time. Karis hopes it will be soon. She's tired of tubes, of not being able to eat, of spinning her wheels when there is so much life to be lived. But she's in much better shape emotionally as we come back to Pittsburgh than she was when we left. The time at home in Brazil did her worlds of good.

A note of praise to God and gratitude to special friends who made the trip to Brazil financially possible: We received a gift of $5000 from friends for this trip, and the cost of Karis' TPN, fluids, and weekly lab exams came to $5,045! Her doctor refused payment for his services, and another friend in Brazil gave us a gift while we were there that allowed us to purchase pain medication when what we took with us from Pittsburgh ran out. What an amazing thing it is to be cared for so generously by the Body of Christ, when our own resources have run dry.

Monday, June 13, 2005, 10:30 p.m.
(Debbie) Our time in Brazil has been very special, and we're grateful. Dan was here last week, so we had our whole family together. He had to leave last night to return to his work in DC. I'm hoping that Dan will find time to write something about his time here, in his inimitable style!

Karis and I are scheduled to fly out Thursday evening to return to Pittsburgh. David and Rachel will be making a trip to Medellin, Colombia on Saturday so Valerie will be staying with friends the week that they are gone, her first week of vacation from school. Once again our family scatters geographically, but we cherish each other in our hearts.

Karis has done very well during our time here, with no need for special interventions. She has had a great deal of abdominal pain for the last two weeks or so, which from the lab work does not seem to be pancreatitis but feels like it is. She has a hard time making it through three hours until she can have her next dose of Dilaudid, and that has kept her a bit dopey. Otherwise though she is doing well, and has enjoyed time with friends and family.

Carissa's surgery to remove her intestine is scheduled for tomorrow, June 14. We really appreciate your prayers for her!

Thursday, June 2, 2005, 8:20 p.m.
(Rachel)

We've been delighted having mom and Karis at home with us in Brazil.  The house becomes so much more home with my mom's presence, and it's so exciting to be able to spend time with her and Karis.  Last time I saw Karis was the day she got off the ventilator (Jan. 11 or so).  At the time she was fading in and out of consciousness and could only talk in the slightest of whispers.  Compared to then, she's another person!  She continues to get better in terms of walking (more than a mile at a time, once doing that twice in one day!) and gradually getting off more and more meds.

Yet I admit I somehow expected with her coming back to Brazil that she would completely be her old self.  It hasn't been that way, and of course I now realize it was an unfair expectation.  Last time she was here, she lit up any room she walked into with her personal shine and energy, she was bouncing all over the city visiting friends, and she was full of plans, thoughts and ideas for the future.  Presently she doesn't have energy to go out much, and is exhausted after doing so or after friends come to visit.  She spends a lot of her time on the couch in the living room.  Going anywhere, even in the house, takes concerted effort and energy.  Her mental capacities in terms of memory, reading and writing are not back to where they were before the comas, and she knows it.  Her voice is still hoarse.  I think it's getting better, but it's hard for me to tell whether that is the case or whether I'm just getting used to it being hoarse.  We believe all these things are only a matter of time, but it is hard for her to have that perspective at the moment. 

I only recently better understood the situation with Karis' legs.  While her left leg is getting stronger everyday, her right leg below the knee continues to have no muscle to it, and there is no hope of developing any muscle in the near future except for by a direct intervention by God.  She walks by using her upper leg muscles to lift and move her lower leg.  Whenever she goes out she wears a brace that keeps her lower leg from flopping around so that she can do this more easily.  When she walks without her brace she either just drags that foot, or lifts it really high using her thigh and knee muscles and then puts it back down. 

The reason the muscles in that leg are not being strengthened with the rest of her body is that there was major nerve damage to her right calf and foot while she was comatose.  As a result, her brain cannot communicate with those muscles, and therefore they cannot be developed.  Nerves are the parts of the body that take longest and are hardest to heal.  The doctors say that if those nerves do get better, it will be a matter of years.  In other words, most likely no running or playing any active sports for at least several years, if not for the rest of Karis' life.  Those of you who have seen her when she's well know that she loves to do those things.  What hits her hardest, however, is her inability to dance.  I have never seen joy, freedom, and grace quite like Karis's when she dances.  The fact that she may never be able to do so again seens like a huge hole no matter what other opportunities and abilities resurface.  My prayer is, "Lord, let her dance."  Will he do so?  It is impossible for us to know... yet I can feel his smile as I think on the times she danced in the past, and I know her joy and freedom in those moments came from him, and were reflections of His glory.  It is so encouraging to remember that no matter what happens in Karis' future, He is working out beautiful and sacred plans for her life.  He loves her more than we ever could, and He will work out all things for her good to make her more like Christ. 

Sunday, May 29, 2005, 9:30 p.m.
(Debbie) Karis is doing well. We had a wonderful time at the beach on Thursday (see pics!), and special visits with friends on Friday, Saturday, and today.

I'm writing now mostly to ask for your prayers for Carissa. We just talked with her and her mom by phone, and learned some sobering news: last week the doctors told Carissa they don't think she's strong enough to survive transplant surgery. What they want to do is operate to remove her intestine, which they think is the source of one blood infection after another, with the hope that she can then get stronger and gain some weight. When that happens, they will reconsider transplant.

A couple of weeks ago, an article about intestinal transplant was published in the Pittsburgh Post Gazette that features Carissa. It will help you understand her situation better as well as giving you some interesting information about small bowel transplant. Go to http://www.post-gazette.com/pg/05131/502098.stm

If you'd like to track news about Carissa, her web site is www.monkeygirl.atfreeweb.com/updates2005/current.htm

We're so grateful for this special time that God has given to our family.

Wed., May 25, 2005, 10 p.m.
(Debbie) We're having such a good time being home that we're tempted to forget all about the web site, so if we actually do forget for a few days, don't worry--it most likely means Karis is doing well and there's not much to tell you. She saw Dr. Garcia for the first time last night (took us two hours each way to his office, due to heavy rain and traffic). He was her much beloved doctor for many years, so it was a wonderful treat to see him again, especially with things going well. He's added calories to her TPN since she's been losing some weight, and tweaked the recipe a little to balance her electrolyte levels, and gave her permission to use a little higher dose of pain medicine for her feet. Tomorrow we're planning to get up at 5:30 in the morning to spend the day at the beach, taking advantage of a school holiday for Valerie. It's forecast to be a bit cool and a little rainy, so I don't know whether Karis will actually swim in the ocean, but she'll love at least being near it. David taught all of our kids to love the ocean from the time they were tiny, so it's a favorite family outing.

Sunday, May 22, 2005, 3:30 p.m.
(Debbie) HOME: what does it mean to you?? For me, coming home this time has meant delightful hours listening to my three daughters talk, catching up with each other after long months apart in very diverse circumstances. It has also meant the joy of Rachel and Valerie's eagerness to share in caring for Karis, wanting to learn quickly how to help. And THAT has meant hours of sleep for me, and a beginning sense of return to normalcy after an overwhelming weariness that hit me once we arrived. I am so very grateful that God has allowed us to be here. Karis promptly esconced herself in her "old" place on the living room couch, and seems to be more comfortable there than in her bed upstairs for the periods she needs to rest. David was busy concluding a conference when we arrived, but came home Fri. afternoon.

I just read the update Karis wrote, and would like to add a few things to what she said, going all the way back to the ND trip--some impressions and appreciation that need to be expressed. But first I have to tell you something marvelous, that I'm surprised she didn't mention. The day we left Pittsburgh for SP, we were finally able to pick up Karis' new brace! Since it was made from a mold of her foot and leg, it fits perfectly, doesn't hurt her, and has given her so much more balance and confidence that she's able to walk now without using a cane! Yesterday she climbed several steps without using her cane or any other assistance, and she's even practicing alternating feet on the steps rather than moving both feet up one step at a time. Yesterday she walked three laps around the soccer field at PACA and was ready to go for her fourth, but we had run out of time. Those of you in Pittsburgh and South Bend who have seen her recently would be very impressed. I'm so glad we were able to pick up the brace before coming to Brazil--what a difference it has made!

Back to the Notre Dame trip: We were met with heartwarming kindness and courtesy on the part of every single person we encountered at the university, from professors and administrators to parking attendants. No wonder Karis is passionate about Notre Dame! Their motto of transforming knowledge into service is impressively modeled at home. Thanks to Pat Brubaker's thoughtfulness, the university made available to Karis a powered "scooter,"
like a small golf cart that she could use to get around campus so she didn't have to depend on someone pushing her wheelchair. It gave her wonderful mobility and autonomy, both in and out of buildings, and even came with an umbrella, which proved useful! Thank you so much, Pat! It was wonderful to see you and the other kind ladies at the health center. Thanks for taking time for us even in the midst of your big move.

The comfort of the home-away-from-home-away-from-home the Blechls once again provided for us in South Bend was an oasis of rest, refreshment and renewal. Any Jan Karon fans out there will be pleased to know that Esther Bolick's orange marmalade cake really is a prizewinner, at least when made by Barb Blechl! But you gotta plan on devoting an entire afternoon to confecting it.

This trip to ND was like the dress rehearsal for our trip to Brazil. Here's what I learned:
1. Managing time is like the freeway at rush hour: no matter how you try to plan and space things out, when you have to put on the brakes there's liable to be a crash-crash-crash chain-reaction pile-up of people you still want to spend time with and things you still want or need to do.
2. Saying goodbye is tough. Especially when you only just got to say hello again, after such a long time apart from so many dear friends. Count on needing space for tears.
3. When you think you've lost the zip-lock bag of Reglan, and with it a large piece of your sanity, don't panic. Dig a little deeper--it's probably still there, down at the bottom of the box-- along with the other resources you need for the day.
4. Always pack an extra G-tube!
5. Don't leave home without a spare shirt or blouse.
6. When you don't do #4 or #5, you will be very, very grateful to the people who rescue you.
7. When the pharmacy says it will ship Neurontin to you in South Bend by 2nd day air, that really means it will be delivered to your home in Pittsburgh.
In other words, you gotta take it with you.
8. When the airline tells you there is no record of your reservation to Brazil, don't panic--stop yelling into the phone--it just means they spelled your name wrong.
9. Read ALL the labels. Identical packaging doesn't mean it's more Metoclopramide--this time it is Diphenhydramine, even though last time it came in a little brown light-proof bag. In a pinch, when you think you don't have IV Benadryl and know that Karis will break out in an itchy red rash top to toe if she receives her antibiotic without it, run to the nearest pharmacy and buy liquid oral Benadryl. Twice the normal dose through the G-tube just might work. Moral of the story: doubtless there's a creative way to solve this problem by 6 a.m., even if it takes you half the night to figure it out. But for less stress, find your glasses and read all the little labels.
10. No doubt packing 15 medications, 3 pumps, tubing, syringes, and all the stuff that goes with it all will get easier with practice. Next time freeze twice the number of ice packs for the cold things.

MOST IMPORTANT: God's grace is renewed every morning, even outside of Pittsburgh!!

I want to thank those who knew I was concerned about our trip to Brazil and prayed especially about that. On both flights, from Pittsburgh to Houston and Houston to São Paulo, the flight attendant gave us bulkhead seats, in the middle section with 3 seats in a row, with no one in the middle seat. This gave us space for all the medical stuff we had to do in flight. The disadvantage was that the bulkhead arm rests hold the tray tables, so they don't move, which meant Karis couldn't lie down. But the flight attendant kindly looked the other way when I made a pallet with blankets on the floor in front of the seats, so Karis was able to stretch out and sleep for several hours. That was a wonderful blessing.

David already told you about the amazing thing that happened with customs in São Paulo. I spent half the night on the plane figuring out how to persuade the customs agent to let us into the country with all the drugs and medical stuff we had with us, and didn't have to use any of my arguments! Praise God!!

It was a great joy to attend Valerie's choir concert last night. What a wonderful expression of praise to the One who truly has "never failed me yet."

Friday, May 20, 2005
Karis, sharing about the week of May 9-15 at Notre Dame and arrival in Brazil.
(Karis) Monday (May 9th) I got out of the hospital and early Tuesday hit the road for Notre Dame.  It had been a year and a half since I saw my friends there.  The people in my class had finished their studies for the year and were enjoying the final week called “Senior Week,” in which, in the midst of various ceremonies the main focus was time with friends before being spread to the four winds.  I arrived just as a party in my honor was beginning, with around 40 people all wanting to talk with me at the same time.  After so many weeks of solitude, I was suddenly in a delightful climateand didn’t want to go home.

The week was a mixture of sweet and sad, seeing my intimate group of friend again and having to say good-by.   So many questions hidden behind jokes and games, asking “will we see each other again?” and “will we maintain contact?” knowing that we would never be the same again after this week.  I saw so many people… but not all that I wished I could have.  The week was too short and I needed to rest a lot.  We stayed at Blechls, marvelous friends whose home is full of peace.

Being with so many people, I got a terrific cold that I passed on to my Mom.  In the midst of all that I tried to wean off of one of the narcotics that I’ve been using and found myself absolutely unable to sleep.  We also had to deal with all my stuff that we’d left behind quickly the night I was first called for transplant in March of 2004.  Box after box of books, clothes, everything…  we worked a lot sorting it out, throwing and giving stuff away and deciding what to keep.

Sunday morning (the 15th) was a unique moment, almost magical, when I returned to my church and worshiped with my extended family there.  I cried up a storm.  In the midst of the worship there was a song about prostrating ourselves at the feet of Jesus and giving Him our crowns.  At first, I could only think about the crowns of my friends whom I had seen honored throughout the graduation week.  It was impressive to see the titles and awards they had worked so hard to win.  And I, in the midst of my friends, hadn’t accomplished anything.  It was as if I had slept through those months while they lived them to the fullest.  At that moment of feeling desolate I heard a sweet voice telling me that I also had a crown to lay at my Lord’s feet.  Quite different from the crowns of my companions, but even so, valid: a crown of suffering, a crown of thorns.  It was all I had to be  proud of or happy about in these last two years: I survived. 
(And that, only thanks to those who surrounded me with love and prayer).  I gave Him the crown.

We returned to Pittsburgh Sunday, almost midnight.
The next few days were pure work, getting ready for the trip to Brazil.  We had so many extra medicines to bring that we didn’t even bring any clothes.  Thanks be to GodREALLY REALLY thanks to Him, the trip went well.  We arrived home exhausted and at the moment my Mom is sleeping.  I think I’ll go follow her example.

Thursday, May 19, 2005
(Dave) Karis and Deb are in Brazil!!  Safe happy good trip.  Miracle in customs.  Having listed everything they needed to declare and going into the line to declare everything for customs, an agent shunted them, wheelchair and attendants and all, into the "nothing-to-declare" line.  They obeyed, puzzled.  The attendant in that line was looking at everyone's customs cards as they were turned in, but when he got to Debbie and Karis he took each of their cards, didn't look at them, and just waved them through.  Debbie kept asking all the way home whether the airport security weren't coming after them to catch them for evading customs duty!  The guardian angels had extra angels at work this morning!  Some that took the guise of customs duty officials, by the sounds of it!

Monday, May 16, 2005, 9 p.m.
(Debbie) We arrived home (in Pittsburgh) from Indiana last night at almost midnight. We had a wonderful week but are very tired and a bit overwhelmed by all we have to do to get ready for our trip to Brazil. We'll write more as soon as we can!

Wednesday, May 11, 2005
(Battle writing) Karis got out of the hospital on Monday.  I thought Karis looked better than she had previously.  When she arrived she was able to walk up the stone steps at the front of our home with no assistance.  I arrived shortly after this and we had a nice visit on the front porch sitting in the sunshine which was a real joy for Karis.  

She and Debbie left for Notre Dame on Tuesday morning and have arrived safely.  Debbie says they are having a great time!

Monday, May 9, 2005, 11:00 a.m.
(Debbie) We just received news that Karis' blood culture continues negative, so she'll be released from the hospital this afternoon after her 3:00 antibiotic. By the time we receive her TPN, fluids, medications, and supplies for home care it will be too late in the day for us to travel today, but we'll plan to drive to South Bend tomorrow and hope to arrive there mid-afternoon. Karis is VERY excited!

Sunday, May 8, 2005, 7:00 p.m.
(Karis)
"I thought of something you could do for me for Mothers' Day," Mom said as I woke from a long afternoon nap. There was a gleam in her eye. "You could write the update for me." So here I am. Today Pittsburgh was sporting the most gorgeous weather I've seen, and we got to leave the hospital on pass and be out in it. We went to church in the morning. It's the first time I've dressed up since October or something like that. It was wonderful to worship again with the Ascension folks and to chat afterwards, but it sure was exhausting. Thus the afternoon nap.
But all is well--the second lab result came back negative--so we are hoping to get out of here tomorrow and head to South Bend to see friends graduate.

Saturday, May 7, 2005, 5:00 p.m.
(Debbie) Negative cultures today!! Yes!! Karis received a pass to leave the hospital for a couple of hours today and used part of the time to pack for going to ND. We're thinking toward discharge on Monday and taking off for South Bend as soon as we receive her TPN and medications from the home health care pharmacy. Yesterday and today Karis has tolerated periods of time when she's awake without oxygen, though she still seems to need it when she sleeps. We're heading in the right direction!

Friday, May 6, 2005, 4:30 p.m.
(Debbie) The staph seems to have settled in on Karis' catheter, because we still don't have our desired negative cultures. Today they started sealing antibiotic into the catheter during the three hours/day it's not being used. Please pray that this will be effective.

I hope you're remembering to pray for Carissa, who urgently needs her transplant! Thank you.

Thursday, May 5, 2005, 7:30 p.m.
(Debbie) Karis has had a good day, enjoying friends who have stopped by or called to wish her happy birthday. Dr. Soltys let her choose something to drink other than water, as a birthday treat, saying that since she's in the hospital, if it were to cause problems they would deal with them. Karis chose hot chocolate and enjoyed it thoroughly, until her tummy started hurting. She says she won't do it again but it was a wonderful treat!

Two more difficult aspects of the day were being told that the blood culture that was negative yesterday had turned positive, and learning that Buddy was put to sleep yesterday. We continue in our dependence on God in regard to plans for both upcoming trips.

Tuesday (and Wednesday), May 3-4, 2005
(Debbie)  Karis got out of ICU at 5:45!!  Very happy to be up on 7 North.  She's down to 2 liters of oxygen and has had much less pancreatic pain today.  She received two units of blood today, and that should help her oxigenation.  Dr. Soltys made us happy by saying he thinks the benefits of our two planned trips, to Notre Dame and to Brazil, outweigh the potential risks, so we are planning on both!  We'll plan to leave for South Bend whenever Karis is released from the hospital, and our tickets for Brazil are for May 18, two weeks from tomorrow.  Karis is very excited about seeing friends in both places.

David got home (in São Paulo) from Cuiabá today, and so Valerie is home too, from her "second family," Nathanael and Julie and Ethan Fawcett.  We just talked with David and Val and learned the sad news that in their absence, Karis' dog Buddy was hit by a motorcycle.  The decision will probably be made by the vet tomorrow whether he will live.  (The motorcyclist suffered a broken arm.)  This is very hard.  Buddy was a birthday gift when Karis turned 13.

I spent a fair amount of time this morning calculating the supplies we'll need from now until about June 20, and sent off a fax to RX Pharmacy.  They're working on getting approval from the insurance company and then will start putting it together for us.  Have been very nice about it.

Karis wants to leave for South Bend as soon as she gets out of the hospital.  We'll need a little bit of lead time (at least a day, I think) to be able to get TPN and fluids to take with us, as well as whatever antibiotics she'll still be on.  TODAY HER CULTURES WERE NEGATIVE!  If they continue so for three days straight, and if she's able to breathe without oxygen by then, I think they'll let us out.

Monday, May 2, 2005, 11:30 p.m.
(Debbie)  Karis had a good day but she's still in ICU.  The docs weren't satisfied with her respiratory status and her blood cultures are still positive for Klebsiella and for coag negative staph.  :(  However, they did let her go out in her wheelchair for 45 minutes with a portable oxygen tank.  She used the time in the hospital library enjoying e-mail.

Karis is getting concerned because she has been planning to spend a week at Notre Dame catching up a little bit with her friends before they graduate on May 15.  She asked the doctor today about getting out of the hospital.  He said she would need negative blood cultures and stable respiratory status, preferably not needing oxygen (she's still on 4 liters and easily gets short of breath).  He thought that might take 5-7 days to achieve.  In any case, it does look like she'll be spending her birthday in the hospital--hopefully on 7 North instead of ICU!  Karis told the doctor he should free up her bedspace in the ICU for a child who is actually sick.

Monday, May 2, 2005, 10:00 a.m.
(Debbie) SPECIAL NOTICE FOR PITTSBURGH-AREA FRIENDS: You're invited to come by for a few minutes on Thursday anytime after 4:00 p.m. to eat a piece of birthday cake for Karis. Please watch the web to know whether to come to the hospital or to the Browns' house at 375 S. Pacific Ave. THANK YOU!

Karis is doing well. Her pain is under control so she's comfortable and interactive, delighting us all with her humor. The CT scan did not show anything going on other than pancreatitis, so we're grateful for that.

Diuresis is going well, but she wasn't able to hold her blood gases at a good level on 3 liters of oxygen so is back up to 4. No one has said anything to us yet about getting out of ICU today, but I'm sure it will be soon.

Sunday, May 1, 2005, 7:00 p.m.
(Debbie) Today hasn't turned out quite like I expected. I thought I would arrive this morning to find Karis being moved out of ICU. Instead, I found her in severe pain, which only increased through the morning despite multiple doses of pain medicines. They decided to do a CT scan because her pancreatic numbers don't seem to be high enough to explain the amount of pain she has experienced. We are still waiting to learn the results of the scan. Karis has finally been able to relax enough to sleep a little bit, a great relief since she didn't sleep all last night.

The second reason she's still in ICU is that they want to monitor the process of diuresis (getting rid of the extra fluid accumulated in her body) to be sure that she doesn't go back into a blood pressure crisis. They're giving her six hours of bicarbonate to help neutralize the contrast that was used in her blood for the CT scan, and after that will start Lasix. So I have a feeling it will be a long night . . . I'm glad she's sleeping now!

On the positive side, she's been able to decrease her oxygen level from four to three, and is off the steroid drip, receiving steroids now every six hours instead of continuously.

Sunday, May 1, 2005, 8 a.m.
(Debbie) A little more information about what happened to Karis and what she has to deal with now:
Bacteria in the bloodstream can cause vasodilation. That means the blood vessels "relax" and become leaky, so fluid drains out into the tissues instead of staying in the blood. That's what caused Karis' low blood pressure. To try to raise it, they first tried flooding her with fluids and albumin (blood protein) to try to overcome the loss of fluids. This didn't help. Then they tried giving her steroids, which also didn't help. That's when she was moved to ICU, so that she could have a drug called norepinephrine which makes the blood vessels clamp down and stop leaking. This worked well, so Karis recovered quickly.

Now, however, she still has about 5 kilos of extra fluids in her body, that will take time to be reabsorbed into the blood and excreted. The doctors are still afraid to do anything aggressive regarding getting rid of the extra fluid because they don't want to put her back into low blood pressure. Some of the fluids ended up in her lungs, which is why she has needed oxygen again to help her breathe. When there is low blood volume for awhile other body organs can be affected also, and we're still figuring out how well her kidneys are handling the stress.

A couple things really helped prevent this situation from becoming more
serious: 1. Karis was already taking the right antibiotics, so she had a jump start on dealing with the bacteria. 2. She was already in the hospital when her blood pressure fell, so was able to have immediate, expert assistance. We're grateful to God for both of these important factors.

Hope this helps!

Saturday, April 30, 2005, 4:00 p.m.
(Debbie) We're very encouraged! Karis is doing well, and we just had a visit from one of the infectious diseases doctors who told us she doesn't think Karis has a line infection. The organism responsible for her sepsis has been identified as gram negative rods, which probably means it crossed from her gut into her bloodstream, rather than being a contamination from outside. It probably happened because Karis' white blood cell count was so low. If her WBC count had been normal, she probably could have dealt with the bacteria herself, as all of us do all the time. This hypothesis will be confirmed if the blood cultures quickly turn negative, since Karis has been receiving the appropriate antibiotics. They've dropped the antifungals, now that the offending organism has been identified as bacterial.

Part of the reason Dr. Wald thinks this is "just" sepsis is that Karis has responded so quickly to treatment. She's now off the norepinephrine and is holding normal blood pressures on her own, though she's still receiving steroids. She hasn't been able to come down from four liters of oxygen, but Dr. Wald says they would expect her lungs to take a couple more days to normalize, since they're more sensitive due to scarring from her pneumonias.

Karis has been awake all day today, asking to get out of bed, which they're not allowing because she has an arterial line in her foot. She's not feeling very sick anymore and is eager to get out of ICU. They're telling us probably tomorrow. Right now she's sitting up in bed doing crochet. :) The ICU people keep commenting how wonderful Karis looks, compared to when they last saw her in January!

Friday, April 29, 2005, 11:30 p.m.
(Debbie) Karis is stable and is being weaned gradually off the norepinephrine which was used to raise her blood pressure. As things are going, she should be off it by morning and able then to move back up to 7 North. We don't have results from the blood cultures yet, so she's being bombarded with antibiotics and antifungals. Something must be working, because she hasn't had fever the last few hours and actually woke up and sat up for a little while this evening. Thank you for your concern and prayers.

I'd like to ask you to pray also for our friend Carissa, whom I have mentioned before. She told me today that if she is not called for transplant within the next two weeks, she will have surgery to remove her intestine. It is chronically infected with bacteria which are causing one line infection after another, and keeping her from gaining weight even on TPN. (She's 5' 3" and currently weighs 68 pounds.) Please pray for God's intervention and for His strength. Thank you!

Friday, April 29, 2005, 2:00 p.m.
(Debbie) This morning Karis' blood pressure bottomed out (63/27) and after efforts to stabilize her on 7 North failed, she was moved to ICU. They call it septic shock.
Thank you for your prayers.

Friday, April 29, 2005, 3 a.m.
(Debbie) My sister Karen and I just came home from the hospital to sleep for awhile. Karis was admitted around midnight with a high fever, back in "her" very same room on 7 North (the nurse told us they call room 28 "Karis' room"). Karis was very disappointed, because her aunt, uncle, and cousins had arrived just a couple hours before for a two-day visit, and she had lots of plans in mind to enjoy with them.

We found out Tuesday, shortly after I got back to Pittsburgh from Brazil, that Karis' white blood cell count was very low, making her vulnerable to an infection, and she's had three once-daily shots to help stimulate white blood cell production. We don't yet know what is causing this fever, but of course always worry that it may be a line infection.

My sister Jan left this morning to return to her family and ministry in Mexico, after both she and Linda did an amazing job of juggling all that goes into Karis' home care, while I enjoyed two weeks at home with David and Valerie in Brazil.

Please pray for Karis, as she faces yet one more "jerking" of the roller coaster (she says her life is like riding a roller coaster in the dark, because she can never see what's coming). Thanks so much.

Sunday, April 24, 2005

(Jan) Hard to believe I've already been here a week and a half, and I apologize for not updating the website sooner! It's rather daunting to follow in Debbie's footsteps, both in caring for Karis and trying to give an accurate, interesting picture of what is going on, and Linda did a good job last week of training me and explaining for you what the experience is like for caregivers coming in new. Most of what we do is quiet and secluded, up here in our 3rd floor apt, except that M-F there's either physical therapy, a clinic appt, or Wed' home-care nurse's visit when Karis' mediport is changed and she's allowed a shower. On days that we're out and Karis has energy, we try to tack on a short walk or stop at the library, but if we overdo it, she's wiped out that evening and sleeps more the next day
.
Medical procedures are prepared for and administered at 8, 10, 2, 4, 7 and 10 (though Debbie also had 6am and midnight routines that are no longer required), and of course record and inventory maintenance. The longer procedures are at 10am and 10pm; the others can even be done off-site if we need or want to, such as when walking in a park or waiting for clinic or physical therapy at the hospital. Every once in a while there's open space for email, a nap, or a genuine cooked dinner (seems less a priority since Karis can't eat), but just as often, those spaces are filled with other needs. What a blessing that our "patient" is patient, cooperative, and gracious; I know many fulltime home-care givers have the added burden of patients who are angry, resistant or demanding.

Our routine appt at the hospital had a surprise ending this last Thursday:
Karis was readmitted to 7North and we didn't return home until time for 10pm meds on Friday night. What we have continued to call pancreatic pain needed a new explanation, since her lipase and amylase numbers were very good (279 and 66, for those who track these things :), and the doctor wondered about an ulcer. Karis needed to be an in-patient to be sedated for the endoscopy, so was given her old room in 7N Thurs night and then while she slept/weird-dreamed off the drugs after Friday's procedure. I came home Thurs after clinic for some supplies and spent the night at the hospital with her. Seems that her old friends on 7N just can't do without her for too long at a time, and Karis is certainly known and loved throughout that building! It was a strange feeling beeping for a nurse to come do what I'd been doing on my own for a week already, and watching them substitute approximate IV's when I knew we were fully stocked with her personalized "medical diet" at home! I wondered also if she was sedated as an adult without fully adjusting for her mere 50 kilos--she slept almost straight thru for 30 hours after, complete with the strange dreams that often accompany such drugs.

We're not entirely satisfied with the outcome of all this. While it's wonderful the pancreas is behaving and that there's no stomach ulcer, still we have no explanation why the upper-belly pain persists despite all the meds. Please pray with us that this can be diagnosed and treated. I wonder if some of the meds that make her so groggy could be reduced if that one trouble spot could be addressed more specifically.

Pray also for God's continued touch on Karis' feet. Though she works hard at PT and has made amazing strides :-), she is still begging God to restore damaged nerves, muscles, joints, and circulation to her feet, particularly the right one.

On Sat evening, we were delighted to welcome my sister Karen's family, who stayed with us overnight on their spring break trip which includes visits to five colleges of interest to Ben. They will come back thru later this week to see Debbie as well. They were good sports about fitting in around what Karis needed, and were already familiar with several rules and routines due to Karen's recuperation from cancer and chemo last year. It was good to see them, and we appreciated a devotional time together before they left.
Pretty special to have a pastor's meditation, a youth worship team, and a prayer time as backdrop for changing Sunday morning IV's! Our weather, as perhaps yours, turned from balmy spring to cold, windy, and flurries very quickly this weekend, so we hope the Johnsons, who were dressed for spring, get home in good health. I feel blessed that on this short, rather secluded trip, I'll have seen Linda, Karen, and Debbie--almost half my siblings!

In retrospect, let me mention some praise and prayer items for Karis:
When I saw her late February, Karis was still on oxygen part-time, with fears that her lungs would not fully heal. She had steroid puffiness to her face, and dealt with so much foot and pancreatic pain she could barely converse. She was taking cautious steps using a walker and needed a lot of support.
Today, her lungs consistently sound good, the puffiness is gone, we've had several deep conversations, and she manages all 47 steps alone, though she's happy for someone alongside to carry the IV pump and medical bag :-) She is losing quite a bit of hair though (after sharing 12" often in the past for making wigs for cancer patients), can have nothing by mouth except water, and still has daily-but-intermittent belly and foot pain. She does pretty well compensating for the feet by careful use of leg muscles, but doesn't know whether she'll be able to walk freely, run or dance again.
She is looking forward to having a properly fitting brace for her right foot. There is nothing impossible for the One who made those feet, but let's continue to intercede for Karis in this.

Debbie returns midday Tuesday and I leave midday Thursday. Not much time to hand things back and catch up a bit with her before returning to Mexico. It will be hard to leave but good to catch up with Steve and Joel!

Love to a great team of pray-ers. Have a wonderful week!

Sat., April 9, 2005
(Debbie)  Based on feedback from my previous notice, we've decided to try to update the website about once a week, without e-mail notification.  We will send out an e-mail, however, if something drastic happens.  OK?

Here's a note from Karis:
I don't know what to say except THANK YOU:  to people who have written, prayed, visited, sent cards and packages, and all who have cared about me.  I came home from the hospital and found a chair full of stuffed animals to greet me.  They represent a crowd of friends who have given them to me over the last few months.  Your prayers are very precious to me. 

We just started outpatient physical therapy on Friday and set goals so that I can work toward getting stronger and more independent each day.  Tomorrow my mom is traveling to Brazil for a couple of weeks and my aunts Linda and Jan will be taking care of me.  Aunt Linda has been practicing administering medications and all my IV stuff and getting to know the doctors.  I am on IV's about twenty hours every day.  We spent a few hours back in the hospital on Thursday to get my electrolytes back in balance, but we didn't have to spend the night.  I am weaning off the IV narcotics and am down to half of what I was taking when I left the hospital.  I should be completely off by the end of April, and I hope that will improve my thinking and concentration.  It's still hard for me to read or write very much at a time.

Next week I will finally be measured for my own foot brace.  I have been using one that belonged to someone else and doesn't really fit me.  I am getting better at doing the stairs here at the Browns' house, but it's still a big challenge for me. 

I am looking forward to some day having enough energy to think about other people more and not just getting myself through each day.  But right now my job is to start doing more for myself, and that will free up people who are still having to take care of me almost 100% of the time. It's a slow process and sometimes frustrating, but we are making progress!

Once again, thank you.  I send all of you my love.

Sat., April 2, 2005, 11:30 a.m.
(Debbie)  A note to Pittsburgh-area friends:  We have lost Karis' guitar.  The head nurse at the Children's Institute, where we last had it, did an extensive search and talked with all the staff.  One nurse said that a friend of Karis' came by and got the guitar, saying Karis wanted it.  I imagine that means someone stole it, but if you know anything about it, please call us!  It is a wonderful guitar from Brazil, a gift many years ago from Karis' godparents, and I am heartbroken that it is lost.  Thank you.

Friday, April 1, 2005; end of day
(David)  Karis continues gaining strength and health at home, at the same time that the challenges of maintaining all the care and medications are very high.  If you haven’t read the Wednesday update below, you should do so to have an idea of the work involved.  Deb is tired so I offered to do this update for her tonight.  She and Karis had a good day, almost managing to get to the library, having come down the 47 stairs from our apartment and out to the car when the occupational therapist arrived (an hour and a half late)!  They went back inside, but Thursday they had a wonderful fun walk to a small park about five blocks from our home, Friendship Park, Karis with her cane and Deb with the wheelchair (what a pair!) so that Karis could sit down when she got tired.

Deb’s sister, Linda, arrives Saturday and after initial orientation and instruction should be a big help in relieving Deb as regards all that needs to be done.  Medicaid will cover nursing help for a limited number of days, so we’re planning to have a nurse with Linda when Deb travels to Brazil on Sunday, April 10th for two weeks.  Jan, another sister of Debbie’s will arrive in the middle of those two weeks to take Linda’s place.  Deb and Karis plan to go to the Saturday night worship service at the church since mornings are too full of various medical treatments, applications or interventions.

Prayer requests:
1. That God would give grace and strength to Karis, Debbie, Linda e Jan in these challenging days and weeks.
2. That God would bless everything related to Deb’s trip April 10-26 (being in Brazil from the 11th to the 25th), in first place that Karis’s health would remain good and improving while Deb is in Brazil and secondly, that Karis’s health would continue well while Deb is away.
3. We’ve already bought Deb’s and Karis’s tickets to come together to Brazil on May 18th and leaving four weeks alter on June 16th.  So you can extend your prayers related to Deb’s April trip on to this trip as well, adding that Karis might continue healthy during those four weeks she’s in Brazil.

Praise items! 
1. Karis's pancreatitis is MUCH better.  One measure is the level of lipase which normally is around 40, but up to 400 is not considered bad.  Karis had gotten above 5000, but is now at 410!  Aleluia!!!  Eight weeks or more of battling that pain which they say is similar to kidney stones.  She has five pain medicines, two for her neuropathy in her feet (both feet hurt, one she can control, one she can't); methadone and two others for the pancreatitis.  The methadone has been at a high level and will take four weeks to wean her down without going into withdrawal.  Pray that the pancretitis will indeed continue to resolve itself and not come back; no one knows why it hit nor why it took so long to resolve, except that the pancreas is damaged.  Hence the conclusion that the new transplant will need to be for intestine, stomach and pancreas, all coming as a "package" from the same donor.
2. Karis's catheter continues without infection.  Repeatedly, you remember, there were differences of opinions among specialists, one group wanting to pull the infected catheter which is the normal thing to do and our transplant doctors insisting on using any method they could think of including ones they hadn't used before to save the catheter. Thanks be to God, it was saved, to the surprise of many doctors. Alleluia!

Wed., Mar. 30, 2005, 2 p.m.
(Debbie) These are very busy days as we get organized to take care of Karis at home. She has 12 IV interventions between 6 a.m. and midnight, using three different pumps, plus oral and G-tube medications (ten different medications), plus dressing change and tube care, plus physical therapy and occupational therapy and what's called "activities of daily living" (today she got to take her first shower since August!! She literally squealed with delight!). So far we've had four nurses here at the house at different times teaching us everything, and the physical therapist will come for the first time tomorrow. Karis also has a clinic visit back at the hospital tomorrow afternoon. I know that I won't have time to write tomorrow, so I'll try to catch up better on Friday.
Oops--the IV is beeping!

Tues., Mar. 29, 2005, 4 p.m.
(Debbie) We're home!!! Karis has made it to the second floor of the house and is resting a bit, chatting with Carol and Liz and Cole Van Ormer, before tackling the last flight of stairs. In a little while her medical supplies, medicines, TPN, etc., will be delivered, and a home health nurse is scheduled to come at 5:00 to make sure we're comfortable with everything. It's a gorgeous sunny day--perfect for a wonderful homecoming!

Monday, Mar. 28, 2005, 6 p.m.
(Debbie) The plan is to go home from the hospital tomorrow morning! It's even supposed to be a sunny, warm day, after a long series of cold rainy days. Karis is feeling much better today than yesterday, and we're excited about this new phase, after seven months of hospitalization!

Easter Sunday, 3 p.m.
(Debbie)  I was hoping that Karis would send you an Easter greeting today, but during the night she developed a severe headache that is still unrelieved, despite various pain medications.  This is unusual for Karis--she seldom has headaches, and I don't remember her having had one of this intensity.  She just wants darkness and quiet, so of course she wasn't able to go to church this morning to participate in any of the glorious Easter celebrations at Ascension.  I was very disappointed.  At the same time, I am grateful that the Living Christ is not contained within the walls of a church building, but is present by his Spirit here in this hospital room with us. 

Tina brought us one of the gorgeous lilies that decorated the church, and shared an hour of Easter cheer with us. And Karis' nurse just offered to share with me some of the goodies the nurses brought in for their at-work Easter celebration today!  Very kind of her!!

When Karis is feeling better, I'll share with her highlights of the services I attended.  One word of Scripture that particularly caught my attention was part of a reading during the Great Vigil:  Ex. 14:13-14, "Do not be afraid.  Stand firm and you will see the deliverance the Lord will bring you today . . . The Lord will fight for you; you need only to be still."  Of course, there are many times when obedience means doing something, not just being still, but it is a comforting word for me today and I hope it may be for you as well.

John's radiosurgery on three brain tumors went very well, though they won't know the results for 6-8 weeks.  Vijay's surgery also went well; Susy writes "the masses were removed from his right lung, they appeared benign, and no extra blood was needed during surgery (though he received a transfusion in the morning, in preparation)."  The plan is to remove Vijay's left lung next month, since it has been collapsed for awhile.  Thank you for praying for our friends!

Good Friday, March 25, 2005, 8 p.m.
(Debbie) Karis went to a Good Friday service at church today, using only her cane to walk and go up and down steps. She did great. Tomorrow she'll receive a medicine to bring her calcium down. For some reason they've been avoiding giving her this drug but they've gotten discouraged just doing the fluids/Lasix thing, and Karis is very grateful that they've stopped all that. If her calcium has come down enough by Monday to satisfy them, we'll go home; if not, then Tuesday.

Johnny had a fever today so his surgery has been postponed until April 12. I don't have information about John or Vijay yet.

Thurs., Mar. 24, 2005, 5 p.m.
(Debbie)  At the beginning of the day, we were told we could plan on going home tomorrow!  I started taking our belongings to the car, and made a trip to the Children's Institute to pick up Karis' things that we had left there, since the rehab doctor cleared Karis yesterday to go home instead of back to the rehab hospital (recommending four PT sessions a week outpatient).  When I got back, Karis told me that the endocrine doctors had vetoed her going home tomorrow, because her calcium is higher today than yesterday, and they feel insecure about sending her home the way it is.  So--at least we got a head start on moving out, and when they actually do let us go, it will be easier!  Now they're saying maybe Monday, but we're expecting that Karis can get a pass to go to church for Easter.

What happened today reminded me of a line from a song sent by my sister Marsha:
"I know nothing of tomorrow except the love of God will rise before the sun; the love of God will rise before the sun."

When you pray tomorrow, please remember three friends who will have surgery tomorrow due to cancer:  Johnny in Indianapolis, Vijay in Chicago, and John in Colorado Springs.  Please remember also our friend Vivianne who is recovering from surgery in São Paulo.  Thank you.

Tues., Mar. 22, 2005, Midnight
(Debbie)  Today was a special day, because we were given a pass to take Karis out of the hospital for two hours!  What fun to feel so free, off of all IV's for that time.  We went to a park, walked a ways to a bench, and for quite a long time watched people playing with their dogs, kids, frisbees and bikes, enjoying the fresh air and the delight of being outdoors.  It was sunny, but colder than we realized, so I ran back to the car for Karis' warm ND blanket to wrap around her. 

The other special thing that happened today was that Karis had NO PAIN all day, so when her IV infiltrated, instead of putting in another one, she asked to discontinue the PCA!  Pain service was a little hesitant, wondering if it was too hasty, but left IV Dilaudid ordered for her if she needs it, as well as an oral med called Oxyfast.  When I left her a few minutes ago, she still had not needed either one.  Her lipase is down to about 1100, and the pain and nausea just seem to have disappeared!

We're still doing the extra fluids/twice daily Lasix routine to continue lowering the calcium, but they have reduced the amounts on both sides of that formula, thank God!  Once they're satisfied with the calcium level, they'll do some fine-tuning of her IV fluids and then I think (???!!!) she may be getting close to going home!  A rehab doctor is supposed to evaluate her some time this week to determine whether she needs to go back to the rehab hospital.  We think not!  Of course, she will continue physical therapy on an outpatient basis if she doesn't go back to the live-in program.

May each of us find time during this week to let God communicate to us more deeply the preciousness of the sacrifice Jesus made for us, and the wonder of the ressurrection.

Mon., Mar. 21, 205, Midnight
(Debbie)  Pancreatitis is better!  Still working on the high calcium, through overloading her with fluids and twice a day Lasix--a pretty thorough rinsing of her blood.  Karis will be very happy when this particular treatment is concluded!

Sat., Mar. 19, 2005, 1:30 p.m.
(Debbie) Karis had a rough day yesterday with pain and nausea, but is feeling much better today. She's just gone to do PT with Battle assisting. I think they're going to do more stair-climbing.

The new pictures feature friends who have invested a lot on her behalf. God has blessed us with many generous and kind friends!

Thurs, March 17, 2005, 9 p.m. (Happy Birthday, David!)
(Debbie)  Karis went outside for OT today, which was delightful.  And in PT she climbed up and down two flights of stairs (22 up and 22 down).  We're starting to think she may not even need to go back to the rehab hospital, since she's made so much progress here and since leaving here keeps getting delayed.

Karis' calcium level is high, and that can be a factor in pancreatitis.  So the plan is to deal with the calcium problem and see whether that helps resolve the pancreatitis.  If not, the ERCP that I mentioned yesterday would be the next consideration.  In any case it looks like we'll be here for a few more days.

We had the amazing experience today of meeting Carissa and her mom, Sharon, who are friends of friends of ours in São Paulo, fellow missionaries Joe and Meta Arthur.  The Arthurs actually told us about Carissa several years ago, so it was a great pleasure to meet her and her mom.  Carissa is here in Pittsburgh awaiting a transplant, and they are staying just a few blocks from this hospital; her surgery will be at an adjoining hospital called Montefiore.  Carissa is 27, has the same blood type as Karis, and is awaiting the same type of transplant that Karis will need this time, including the pancreas and stomach.  It was very interesting for Karis to meet someone close to her age who has had a lot of similar experiences in the last few years.  As you pray for Karis, please pray for Carissa too!

We were told today that they want to go ahead and put Karis' name on the transplant waiting list now, because of the pancreas situation, rather than waiting until June as had been the plan before.  This will not prevent us making a trip to Brazil in late May/early June, if Karis is well enough to travel.  They don't expect organs to be available for her that soon, since others (like Carissa!) are on the list before her.  But they would like to do Karis' transplant later this summer, if possible.  They don't think Karis will be well enough to wait for very long past that.  That's a pretty big adjustment in the way we had been thinking.  We're anxious for Karis to get well enough to get out of the hospital, so that we can have as long of a break "out" as possible before doing the transplant thing all over again.

I've been forgetting to mention that Karis' lungs are doing well--she hasn't needed oxygen at all for the last several days.  That's a wonderful blessing!

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will direct your paths.  Prov. 3:5-6

Wed., March 16, 2005, 1:30 p.m.
(Debbie) Yesterday the temperature was in the 40s so Karis and I went for a wheelchair walk in the neighborhood of the hospital. It was really nice to get outside. I think the weather is supposed to continue improving this week so we'll probably do that more often.

After briefly getting a little better, the pancreatitis has surged up again. Last night and this morning were a bit rough, with pain and nausea. A doctor from Presby (the adjoining adult hospital) will be coming in to talk with us about the pros and cons of doing an ERCP, which involves putting a probe into the pancreas to try to distend the pancreatic duct in the places where it has narrowed down, and perhaps cut the valve that connects the pancreas to the duodenum so that it will drain continuously, and perhaps put in a stint. Apparently these procedures have helped other patients with what they are now calling "chronic" pancreatitis. The CT scan showed inflammation but did not show any abscess or pooling of fluid, so we're grateful for that.

Since we've had to go back up on the pain meds, rather than continuing to come down, it doesn't look likely that Karis will return to the rehab hospital this week. But she's continuing to make progress in PT at the hospital. She climbed up and down one flight of "regular" stairs yesterday, using the walker for support on one side and the stair rail on the other. She might have been able to do more, but she wasn't feeling very well because of the pancreatitis.

The ongoing discomfort of the pancreatitis is a factor in considering whether to try to do another transplant sooner than has been discussed before (this time probably intestine, stomach and pancreas). Please pray for the doctors to have wisdom in knowing what to do and how we should plan.

We had been anticipating the possibility of improvement of Karis' control of her foot through doing a block and more aggressive physical therapy, but the docs no longer think that procedure will really help her. They think the main thing is controlling her pain so that she can do PT effectively, but that it could take months for function to return, if it does at all. Thank you so much to all of you who have made this a special matter of prayer during this Lenten season.

An ultrasound of Karis' kidneys was done yesterday and did not show any structural abnormalities, so we think her dysfunction is medication-related and hope it will improve as she can come off some of the meds that she's on.

I think that's about all. The circumstances are a little discouraging, added to just being in the hospital for so long. Karis asks for prayer that she will be able to maintain a positive attitude and focus on what is good, rather than on what hurts and isn't working well. Thanks!

Mon., March 14, 2005, 11 p.m.
(Debbie)  The pancreatitis numbers aren't much better, but Karis is having less pain and nausea, so we're gradually coming down on the Dilaudid.  She had a repeat CT scan of the pancreas this evening but we don't know yet whether it had anything to contribute to what is already known, that there are alterations in the pancreatic duct along the length of the pancreas that have led the transplant doctors to decide she should get a new pancreas when she gets her new intestine.  For awhile it seemed that Karis wasn't producing enough insulin (also a function of the pancreas) because she was having high blood sugars.  But that seems to have evened out and is OK now.  She does have some other imbalances.  Of particular concern is high calcium, and some of her medications are not being metabolized as quickly as they should be due to inadequate kidney function.  But if the pancreatitis pain continues to decrease, we are hoping to be able to return to the rehab hospital toward the end of the week.

Karis' biggest frustration these days has been almost constant sleepiness.  We counted today five medications that could be making her sleepy, so no wonder!  We're coming down on some of them, so hopefully she'll soon start to feel more like herself.

Friday, March 11, 2005, 8 p.m.
(Debbie) Ky, Chris, and Igor, friends from ND, surprised us today, passing through Pittsburgh on their spring break. It was great to catch up with them a little bit. They helped with PT, even playing "soccer" with Karis in the PT gym, something she's been doing the last couple of days to help improve her balance and dexterity (she balances on her good foot and kicks with the other). She walked farther today without support than she has before. When we got back to her room after PT, Chrissy, one of Karis' former suitemates, was here. What a delightful treat! Too bad her friends couldn't stay a little longer--I would have asked one of them to write an update, so you could hear another "voice." Next time Karis has a visitor, I'll try to remember to ask for that favor!

Wed., March 9, 2005, 6 p.m.
(Debbie)  There doesn't seem much to tell, but let's see:  the blood cultures continue negative, thank God, and though antibiotic therapy will continue for a few more weeks, the doctors believe the mediport to be out of danger.  The pancreatitis pain and nausea are still troublesome, although Karis has been able to cut down a little bit on the pain medicine.  We're going to try out a new oral pain med, a very concentrated solution that is dropped under the tongue and absorbed in the mouth.  If this works, she'll be able to back off the Dilaudid IV, and be closer to being able to return to the rehab hospital.  She still needs continuous IV pain medicine at night to be able to sleep; otherwise the pain wakes her up.  During the day, Karis seems able to tolerate about two hours of activity and then has to rest, which usually means a nap.

Karis is working hard in PT, walking more steadily and farther, making it from her bed to the bathroom without the walker now!  Yesterday and today she worked on climbing steps.  There's a practice set of four steps with handrails in the PT gym, and today she went up and down three times, resting between each time.  One time she used just one hand on the rail to pull herself up, and that was really hard, but she made it with some support from Andy.  Since we live on the third floor at the Browns' house, there will be a lot of steps to navigate once she's able to go back home--47, to be exact, from street level up to our apartment, and only a few of those have a railing.  As we've tried to imagine being back home, we realize Karis is not quite ready, but she is making progress!  When we get discouraged about what she can't do yet, we just have to remember how far she's come from the girl who was too weak to lift her hand or her head from the ICU bed.  Tomorrow will be four months since the surgery to remove her intestine, and we celebrated yesterday seeing the last scab fall off her incision.  Her bed sore is healing rapidly, and is now only the size of a dime and not very painful anymore.

David is in Bolivia for ten days of ministry, and I know he would appreciate your prayers.  While he's gone from São Paulo, Valerie is with her "second family," Nathanael and Julie Fawcett.  We are so grateful to them and to so many others in Brazil who have extended TLC to Valerie and to Dave.

Monday, March 7, 2005, 5 p.m.
(Debbie) The blood cultures are still negative--celebrate and praise God with us!! We're stopping the special antibiotic "seals" and just continuing with Vancomycin and Rifampin regular therapy for three more weeks. That can be done at the rehab hospital, however, so what's keeping us here is the pancreatitis pain that still requires IV narcotics. The enzyme numbers didn't improve since yesterday.

Karis walked further today without support, and was much steadier and more confident. She lost her balance once, but was able to catch and steady herself on her good foot, so we were very proud of her. Pulmonary function tests this afternoon wore her out. We'll probably be told the results of those tests tomorrow.

When going through a challenging time of her own, a friend wrote the following poem that expresses the life-giving role of the Body of Christ. It fits our experience so well that I asked permission from Terri to share it with you. We owe so much to each one of you who has helped us bear the burdens of the last six months.

by Terri Krause
You are, and have been our God through all this trial. You have loved us and provided our every need. We have lacked nothing. You have brought us closer to our own selves, closer to our loved ones. And, through this, closer to You. When circumstances grew too great for us to carry alone, You sent brothers and sisters in Christ to bear the weight with us. The burdens have been lifted as if by magic-one moment such great heaviness as to smother-the next, joy! What a mystery-the grace of God's family. Burden Bearers.

BURDEN BEARERS

It is as if
stumbling deep within dense forest,
fear rising with the stepping up of the wind, we peer through darkness; longing for blindness.
Forms loom. Black, treelike.
but stumpy and listing among the branches.
Terror presses upon us.
Is there no end to the enemy?
We fall.
Shame rushes to claim her prize.

WHERE
is the God
of the Burden Bearer?

The moon escapes its cover.
Shame slinks into the shadows to wait.
The forms take meaning.

Warriors? Allied. A thousand, thousand.
standing watch around our stumbling place.

We have fallen
among our own.

Apprehended, the moon is returned to its quarters; yet, the forms retain their detail, Our mind now discerning the silhouettes- gentle faces, lips whispering in intercession, hands clasped.in prayer.then, lifting- in praise to their Captain.

Wait!
The moon moves not;
Yet, Light sheds abroad in our hearts.
The eyes of our understanding are opened and, suddenly we see- Forces. Innumerable.
Beyond. Beside. Between.
The skies are made up, it seems
of heavenly creatures!
Majestic! Glorious!
Swords raised in defense of their charges.
Purveyors of the Promises,
beckoned by the prayers of the Saints in our behalf.
They await now their orders.

"Protect!"
"Deliver!"
"Defend!"

And, we know.
as if submerged in the waters of Truth
This meeting of spirits in the darkness.
is not Chance.
All are summoned by One Voice.
Each position securely guarded.
Our Captain-a Warrior Himself.

Ah, but now, The Question.

We, too, have pledged our lives
to bear the burdens of others. And, so
we wait to hear
"our" orders.

The answer is confusing.
A relief, it's true; but, tainted by suspicion.

"Rest."

Is that all? What does it mean?
The war is here.
Now.
We touch it without moving an inch.
Excuses are not given in wartime.
Every resource is used for battle.

Guarded, protected by these great troops, Our orders are to rest?
While others continue to stand ready
We do-
Nothing?

We grasp for comprehension.
Our understanding grappling with the Wisdom.
Are you sure?
Why?
How long?

We attempt to counter; but,
Any argument is weak.
We have none.
The orders are right.
The Captain knows our hearts.
We have little-
no, nothing-to offer
Today.

We lie back in the midst of them-
flesh and spirit.
A pebble surrounded by great mountains;
whose shadows once so misperceived,
descend now-
a down-filled coverlet for our souls.

Our dreaming man finds meaning
as we slip into this feathered bed
still half-unwilling thieves.
"Rest? Do nothing?" we ask.
"Oh, no!" Our Captain replies softly.
"Rest is quite active, really.
You can do no better, this day.
To rest is to Trust.
Whether sleeping, or Standing.
All orders are the same."

His words are right.
Sleep is not earned or purchased.
We do not steal
This sweet gift.

And, so
without Shame,
surrounded by our
Burden Bearers
we sleep.

Sat., March 5, 2005, 11:30 a.m.
(Debbie) The docs just came by and told us the cultures are all still negative!!!! Hurrah!!!! They want to continue the antibiotic treatment as it is until Monday, and if everything is still negative, we will all breathe a big sigh of relief and joyfully thank God. Once she's over the pancreatitis she should then be able to return to the rehab hospital and continue regular antibiotic therapy there. We're beginning to see glimmers of light at the end of this tunnel!
Now if ND can just beat Pitt today . . . :)

Thurs., Mar. 3, 2005, 11 p.m.
(Debbie) Karis had a very busy afternoon and was exhausted and ready for bed by 8 p.m. Two things I wanted to tell you: 1. Blood cultures are all negative today! 2. Karis walked down the hallway today BY HERSELF, no hands! No walker, no one supporting her in any way! (Andy, the therapist, did walk beside her to be sure she didn't fall). I can't tell you how exciting this is!! Now if we could just get rid of all the "stuff"
connected to her! (IV's, oxygen, etc. . .)

Thurs., March 3, 2005, 1 p.m.
(Debbie) Today let's just count our blessings. This morning we've especially enjoyed:
* Gorgeous orchids from the Van Ormers (like a touch of Brazil!)
* A visit from Timmy with her guitar
* Listening to CD's from Ren and Tina
* A book in the mail from Aunt Elaine
* Several encouraging e-mails
* Feeling good enough to sit in a chair and finish a puzzle, with Andy's help (all the pieces were there, Jan!)
* Swallowing (!!) water (not just swish and spit)! Karis can now have 500 cc (two cups) over 24 hours!
and much else to be grateful for!

Wed., March 2, 2005, 5:30 p.m.
(Debbie) Little better day today; lipase and amylase are down slightly. First day of Plan B. It'll take a few days to know whether it's working. We are sheltered under the shadow of His wings.

Tues., March 1, 2005, 4:30 p.m.
(Debbie)  Bottom line:  the blood culture turned positive today, but the docs decided on one more try to save the mediport.  If you want more details, read on below.  Karis had a pretty awful day with pain and nausea from the pancreatitis.  She's exhausted physically and emotionally, fed up with being sick.  We do appreciate your love and prayers.

It's Tuesday and we have good news:  the culture from Sunday was still negative this morning, so surgery to remove the mediport was put on hold.  A few minutes ago, though, the infectious disease chief doc came by to tell us that the culture has now turned positive.  "Plan A" (using Rifampin over the weekend) has failed, so he thought Karis should go ahead to surgery.  The transplant docs said no, no, no, they weren't ready to give up the fight yet.  Everybody put their heads together and concocted a new plan to try to save the mediport, which we'll call Plan B:  for the next several days they're going to seal two antibiotics, Vancomycin and Rifampin, one at a time in the mediport for an hour each twice a day.  This will be in addition to the regular administration of antibiotics into the rest of her blood stream.

To accomplish this, Karis will use a peripheral IV line for fluids and pain meds and anything else she might need IV, like Lasix.  The mediport will be used for TPN and antibiotics and the antibiotic seals.

If Plan B doesn't work, they will have to remove the mediport, but there is now a Plan C:  Rather than putting a temporary line into a femoral vein while waiting for the blood to clear, which is the easiest thing to do, they will instead put the temporary line through the same site where the mediport is now, so the vein will be kept open and can't scar or clot off.  This is a bit more messy and complicated, but they'll more likely be able to put a new mediport back in the same vein.  That's a very encouraging idea.

In other news:  :)
*  Pancreatic enzyme levels are down a little bit--not enough for Karis to feel better yet, but at least it seems that they're starting to go the right direction.  Still no clue what caused the pancreatitis, so no good way to treat it except wait it out.
*  Her kidneys are suffering a little bit but her lungs are handling the fluid fluctuations pretty well, with the help of Lasix, respiratory therapy, and oxygen.
*  Her liver is doing well, amazingly enough.
*  MRI showed no infection in the tailbone, thank God, although there's been some absorption of the end of the tailbone.  The bone docs recommend surgically closing the bedsore with a graft, to help prevent more severe infection, but the skin care folks think it's finally healing well and we should let it continue to heal on its own, while it's protected by the antibiotics she's getting for the line infection.  For almost four months now we've been trying to get this healed!  Her tummy incision, from the surgery on Nov. 10, is almost completely healed, finally.

Some people have asked for more explanation about the importance of the mediport.  If you're not one of them, no need to read on.  :) 

Since Karis doesn't have an intestine right now, she can't eat, and anything she drinks drains right out of her stomach; otherwise she throws up.  (Anyway she's not allowed to drink anything right now, even water, because of the pancreatitis.)  Karis receives nutrition (called TPN or hyperal), fluids, and medications through her mediport, which is a type of central line completely under the skin, accessed by an L-shaped needle.  (Another common type of central line you may have heard of is a Broviac catheter, which extends several inches out of the body, usually the chest.)  Because TPN can't be given effectively through a small peripheral vein (a regular IV line), Karis can't survive for long without a central line.  (To give you an idea:  she once had TPN through peripheral veins for two weeks, and burned out 23 veins during that time.  She's had so many IV's that it's now very difficult to find veins in which to start even regular IV's.  When a vein is destroyed or obstructed, the body marvelously grows more veins, called collateral circulation, to take over its function, but the new veins are smaller than the original.) 

A central line, also called a central catheter, is a large IV line placed in one of the large veins of the body that leads to the heart, where maximum blood flow quickly disperses caustic substances like TPN without hurting the veins.  There are six veins normally used for central lines:  four in the upper body (jugulars and subclavians) and two in the lower body (femorals).  Because Karis has had many central lines in the past, which have caused scarring or clots that obstruct the veins, the only large vein still open in her upper body is the one her mediport is using now, the left subclavian.  Central lines placed in the upper body are preferable to the two lower veins (the femorals) for several reasons.  Most importantly, catheters in the lower veins are more prone to infections. 

Femoral lines can be very useful--for example, when Karis was in the ICU on more than twenty IV medications, a temporary triple lumen catheter in the femoral vein was used.  (Triple lumen means there are three lines fused together; each one can branch out and accomodate several IV medications, as long as they are compatible with each other.)  However, because of the high risk of infection, femoral catheters can't be counted on for long term use.  This is why we're so eager to keep an upper-body line functioning.  Karis will need a central line for a long time yet, to get her through this recuperation period and the whole transplant process again.

Some have said, if Karis doesn't have access for a central line, why not use a PICC.  Well, a PICC (which stands for Peripherally Inserted Central Catheter) is another type of central line, usually inserted initially through a vein in the arm, but threaded into one of the large veins mentioned above.  So it doesn't really help:  if the large veins are obstructed, the PICC still can't reach the heart, where it needs to end up.  It's like the branches of a tree.  If you need to get to the trunk, you can start farther out in one of the smaller branches, but eventually you have to go through one of the large branches directly attached to the trunk.  The other thing about PICCs is that they're temporary lines, not intended to be used for more than a few weeks.

Ideally, in the case of a blood infection, all plastic would be removed from the veins, because bacteria love to attach themselves to plastic and those that do are hard to kill with antibiotics.  But Karis is completely dependent on IVs now, so she must have a line in place.  If Plan B doesn't kill all the bacteria, and the mediport is taken out, Karis will use a temporary central line while the infection is being treated.  Since this line too could become contaminated from bacteria still in the blood, a "permanent" line like another mediport will only be installed (this requires another surgery) once it is certain that her blood is clean.  This is the reason too that the treatment of Karis' foot that had been scheduled to start yesterday has been postponed, because that will require insertion of a small temporary catheter in her leg--more plastic that bacteria could attach to.  That treatment is still in the plans, once the blood infection is overcome.

The particular bacteria that Karis is fighting right now, coag negative staph, actually forms a protective film over itself when it attaches to plastic, that antibiotics can't usually penetrate.  Then it goes into hibernation, which is another type of protection, because antibiotics work by interfering with reproduction of the bacteria.  They can hide out like this while the antibiotics are present, and then when antibiotics are out of the way, the bacteria can "wake up" and start multiplying again--and they thrive in a nutrient-rich environment like TPN flowing through the catheter.  The antibiotic Rifampin sometimes cuts through that protective film to get at the bacteria colonizing on an IV line, and that was the hope with Plan A.  

Now, with Plan B, the same strategy will be refined:  Rifampin will be just sitting in the catheter for two hours a day, instead of flowing past on its way into the blood stream, and for another two hours the bacteria will be exposed to stationery Vancomycin, which these bacteria are sensitive to.  In theory it sounds like this may finally do them in.  We'll know when the blood cultures stay negative; that is, when no more live bacteria are present that grow and multiply in the lab.  It usually takes up to three days for this type of bacteria to "wake up" and start to grow in nutrient-rich petri dishes, so that's how long the cultures from a given day need to stay negative in order for us to have confidence that there are no more live bacteria.  Do you know what would happen if the bacteria were not killed?  Karis would die.  This is a life-threatening infection, like all infections of the blood, which are called bacteremia (in the case of bacteria) or septicemia.  When a person is very sick with an infection of the blood he or she is said to be septic.  Karis' bacteremia was caught and treatment started very quickly, so she didn't get very sick from it and the fevers stopped after just a couple of days.

I hope this is helpful, but please ask if you have more questions!

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