Latest update:
Thursday, December 4, 2008
(Debbie) Karis had a wonderful day at home yesterday. She had more energy than we've seen for awhile—we all enjoyed NOT being at the hospital!
This morning she had physical therapy and then clinic. (Clinic involves blood tests and then a several-hour wait until the results come back during which time a nursing assessment is done and transplant patients catch up with each other in the waiting room. Finally the doctors arrive and start the actual consultations.) Today we completed the routine at 3:00 p.m., earlier than often is the case! Karis needs to gain at least 12 pounds ("It's harder than you think!" she says.) Karis's blood work showed that she may have an infection brewing (her white blood count is up), so she has to go back for repeat bloodwork tomorrow morning.
Just now she is snuggled on the sofa, resting from the tiring hours at PT and clinic, listening to a recording of the memorial service for her grandfather Kornfield, which just arrived in the mail. We have just celebrated the purchase of a plane ticket for Valerie, who has decided to come from Italy for Christmas. We seem to all be feeling the need for some family time together.
Tuesday, December 2, 2008
(David): Miracle of miracles, Karis was released from the hospital at the end of the afternoon today! She went in on November 2 and came out on December 2. We truly identify with the Psalmist when he said, “When the Lord brought back the captives to Zion, we were like men who dreamed. Our mouths were filled with laughter, our tongues with sons of joy. Then it was said among the nations, ‘The Lord has done great things for them.’ The Lord has done great things for us, and we are filled with joy” (Ps 126:1-3).
The doctors have wanted Karis to leave the hospital as soon as possible since she could so easily get another infection there. (2,000,000 get infections in hospitals in the US per year). With several adjustments in medications in the last 30 hours, Karis responded well, having less pain and less problems. She needs 20 different medications daily, some 3-4 times a day, making for a potential of about 50 in 24 hours. And she needs to return to the hospital to have blood tests and see the doctor on Thursday for some further adjustments. If all goes well, she’ll continue going to the hospital twice a week until she’s stable enough to go once a week. She needs to wear a mask in church or in other places where there are many people.
The EBV virus that got up to 1,119,000 now is at 2,700 — the lowest it’s been for at least six months. That giant and the others look like they’re under control. Party with us! Thanking the Lord and asking Him that she might continue well, stay out of the hospital and finish her theses. Alleluia!
Saturday, November 29, 2008
(Debbie) A new CT was done which showed "resolution of previously noted pneumatosis in the ileum," so Karis's three-day fast was worthwhile. In consequence, Karis has moved through clear liquids to full liquids and tonight, a little bit of soft food. She's VERY happy! The trade-off is diarrhea again. Dr.
Kareem wants her to take things s-l-o-w-l-y, to not reverse the good progress she has made—a challenge, given how hungry she is! They're going to continue IV antibiotics until Monday, and then reevaluate.
Friday, November 28, 2008 ~ 9 a.m.
(Debbie) Dr. Wu just came by to tell us the results of the biopsies taken Wednesday. He said they are perhaps a little better than a week ago, not in active rejection but still needing a lot of healing. Probably a repeat scope and biopsies will be done early next week. Meanwhile, Karis will continue NPO to give her intestine the best chance to heal.
Some people have asked about Karis's PICC—sorry, I forgot to say that they were successful in placing a PICC (midline) in her left arm and removed the one in her right arm that was hurting. It wasn't infected, just out of place. They can get blood now from the new PICC, which means no more poking around with needles every day, a great relief to Karis! Her arms and hands are all black and blue—now they can heal too!
Thursday, November 27, 2008 ~ Happy Thanksgiving!
(Debbie) Dr. Bond just came by and very patiently explained things to us and answered our many questions. Bottom line: Karis has an area in her lower ileum (near the place where the transplanted intestine joins her small piece of native colon) that has air pockets in the lining of the intestine (a condition called pneumatosis). This can be caused by a number of things, including infection, rejection, and inadequate blood flow (called ischemia).
The pneumatosis is sufficient cause for concern that the docs have ordered complete rest of her bowel, to give it a chance to get well. We are hopeful that this will help—it's been almost four weeks since Karis started having pain, inflammation, ulceration and bleeding in her lower bowel. Later this afternoon the results of the biopsies taken yesterday should be available, which will let us know whether rejection is again a factor, or whether they can maintain her in a lower level of immunosuppression to help her get well and not be so vulnerable to infections. In a few days they will do another scope to see whether things are improving.
Karis's big treat of the day is a popsicle. She can also suck on hard candy (like a peppermint). They've beefed up her IV's so that she's getting some calories that way.
The pain in her gut has actually gotten better since she stopped eating, so that's a big plus (she hasn't needed as much pain medicine). Her headaches are better also. She says this experience with headaches helps her understand what other people deal with, like her friend Margaret from Ascension. She's very thankful today that we're here with her, that three friends from ND are also here visiting, and that she's on 12 North, where the nursing care is excellent. Hey, maybe by Christmas she'll be well enough for a holiday feast! We do have so much to thank God for.
Wednesday, November 26, 2008
(Debbie) People have been asking what's happening with Karis. We are quite confused about that, and probably won't be able to talk with a doctor until tomorrow. A CT was done last night, and endoscopy with biopsies late this afternoon, with the consequence that Karis is being kept NPO (can't eat or drink), but we don't fully understand all the reasons why. We'll explain better as soon as we can!
Happy Thanksgiving!!
Monday, November 24, 2008
(Debbie) Bottom line for prayer: fever, severe headache, difficulty finding venous access.
If you've tracked with us for awhile, you know that Karis lives on a rollercoaster. Yesterday morning the docs were talking about sending her home Monday (today) since the hospital is a dangerous place for someone as immunosuppressed as she is.
Karis didn't feel well during the afternoon, and in the evening she spiked a fever. We don't have blood culture results yet but suspect her PICC (midline), since it has been causing her some pain. Two unsuccessful attempts were made to start a peripheral IV so that the PICC could be removed. Part of the difficulty is that Karis's arms are very swollen (as are other parts of her body), from the combination of steroids and poor nutrition (she eats a lot but isn't absorbing well). When we went home to sleep last night, the plan was to try to place a different PICC in radiology this morning. Meanwhile they gave her some mega-doses of broad-spectrum antibiotics to immediately curb whatever may be causing the fever.
At about 2:30 a.m. we received a distressed phone call from Karis: "Mama, help! Please come." Karis was having one of her worst headaches in history and needed support. Extra doses of Tylenol, Dilaudid, and Zofran calmed the pain and nausea enough that she could eventually sleep. We don't know what caused the headache, which continues, though under better pain control. Don't think she'll be going home today . . .
Friday, November 21, 2008 ~ 5:55 p.m.
(Debbie) Come join our party! We're dancing and praising God—the doctor just came in and said the biopsies show NO MORE ACTIVE REJECTION!! There's still a lot of healing that needs to happen, but things are no longer getting worse.
And her EBV level is down to 770,000—about a third lower than the last check. (Who would ever imagine we would be happy about that number!)
We are SO relieved and grateful and hopeful! The doctor even said that Karis might be able to go home from the hospital soon—amazing! There are a few things that need to get evened out still, but we have definitely made a huge stride forward.
Karis is not feeling very good yet. She still has a lot of pain, and constant hunger, since whatever she eats goes right through her. She's achy and draggy from the medications she's been bombarded with. She's receiving a blood transfusion now, which should give a boost to her energy level.
Praise the Lord!!!!!
OUR HOUSING NEED HAS BEEN MET. Many thanks to everyone for your prayers and suggestions! [Address remains the same for mail.]
Thursday, November 20, 2008
(Debbie) Karis had an endoscopy and a colonoscopy and biopsies today. We won't know the results of the biopsies until tomorrow. Good news: from the top, the intestine looks a lot better. Bad news:
from the bottom, it doesn't; the small extension of native colon and about 5 cm of transplanted ileum are still in terrible shape. However, above this, her ileum looks much better. The doctor who did the scopes suspects that the problem may be a lack of adequate blood flow, but we won't really know until the biopsy results come back. The docs will analyze everything and decide whether to change their approach to treatment.
Wednesday, November 19, 2008
(Debbie) I just had a long talk with Dave, who told me about the precious time they had today in Sebring, FL, celebrating the 84 years God gave to his dad. Dave and Rachel will be arriving back in Pittsburgh tomorrow evening.
Karis did something really fun this morning—she went to the hospital beauty salon and got her hair cut! It looks terrific; Lisa did a great job around the mask Karis had to wear.
Since we got back to her room, Karis has had one IV medication after another. For awhile she was able to stay up and work on her thesis, but once they doped her with Benadryl for some of the stronger meds, she's been crashed in bed. She's had a lot of pain and a lot of intestinal bleeding today. The docs decided to put her on Rituximab, a chemo-type drug which can fight the EBV and the rejection at the same time, but carries high risk for nasty side effects. We both had to sign a consent for her to receive this drug. Dr. Costa is hopeful that it will make a difference and not let the rejection get too out of hand while we're fighting the EBV. This is in addition to all of the other drugs she's already on, which are a boatload.
Supper has just arrived!
Tuesday, November 18, 2008 ~ 4:30 p.m.
(Debbie) We were just informed that Karis's EBV level has leaped from 50,000 to over a million. Dr. Costa says this is due to the OKT-3 wiping out her immune system, so whatever organisms are in or come into her body have total freedom to grow. They've had her on three antibiotics, an antifungal, and two antivirals already, but apparently the antiviral protection has not been adequate. Dr. Costa says they must stop the OKT-3 (effectively stopping the fight against rejection) in order to treat this infection. They can't do both at the same time. It's a huge balancing act. Karis is receiving right now her first doses of two powerful antiviruses. One of them, Cytogam, gave her extremely painful side effects in 2004, but Dr. C doesn't feel we have a choice about trying it again.
The danger of the high EBV is that it has a high probability of causing cancer. The danger of the rejection, of course, is that it can destroy Karis's intestine.
We're caught squarely on the infection/rejection highwire. FOR THE TIME BEING, DR. COSTA HAS ASKED US TO LIMIT VISITORS, while Karis is so vulnerable to infection. Please call before you come, understand if we say no, and if we say yes, be prepared to gown, glove, and mask. Dr. C says he doesn't want three-four people here at a time, as has so often been the case (and as Karis has so enjoyed). Do feel free to call Karis though—for now, she'll have to enjoy your company more often by phone and less in person. If she can't talk to you at the time you call, leave a message & she'll call you back when she can.
Because of the necessity of stopping antirejection treatment, Dr. Costa says there's no point in doing the scope and biopsies tomorrow, because they won't be able to take action on any information that these tests would provide. He wants to focus on the EBV for a few days, getting it back under control, and then do the endoscopy and biopsies when we're ready to swing back around to treating the rejection again.
Dave has decided to come back to Pittsburgh on Thursday, rather than returning to Brazil. We are very interested in finding a place for our family to live for the next few weeks that will put less pressure on the Browns' home. Their unfailing generous hospitality is wonderful, but they're already running a pretty full house. If anyone in the Pittsburgh area knows of a housesitting situation, for example, please let us know—preferably, near the hospital in Oakland. (We don't ask much!! :-))
Tuesday, November 18, 2008
(Debbie) After a somewhat rocky night (pain medicine was increased to help her cope), Karis is feeling better this morning and has not had more bleeding today. She was able to actually sleep a good part of the morning. She will have an endoscopy and biopsies tomorrow (both upper and lower).
There is good news too about my nephew Mike: his symptoms abated, so after spending the night in hospital, he was allowed to go home this morning without surgery.
Our son Dan will be joining the gathering family in Sebring, FL for his grandfather's memorial service tomorrow. Today Dave, his mom, and Rachel are visiting his Aunt Helen (his dad's twin sister) in Bradenton. Aunt Helen had a stroke a few weeks ago and has moved into a nursing home. We hope she'll be able to travel to Sebring for the service tomorrow morning.
Thank you to each one who has sent encouraging words to us. We are grateful for your prayers and for God's renewed mercies each day. Our OC mission pastor sent us this lovely reminder from Deut. 33:25: "Your strength will equal your days."
Monday, November 17, 2008 ~ 2:30 p.m.
(Debbie) My nephew Mike (Karen's son), driving home today from Pittsburgh to Cresskill, NJ, left here not feeling well and has developed all of the symptoms of appendicitis. Please pray for him and for his family. Life has been crazy!
Monday, November 17, 2008
(Debbie) So much has been happening that we haven't managed to keep up with updates. Friday during the memorial service for my father, my cell phone rang. I simply turned it off and didn't check for messages until after the service and the reception following. Turned out the messages were to let us know that Dave's father, Bill Kornfield, had just died. He had a normal morning Friday, ate lunch, lay down for his nap and woke up in heaven.
After the immediate shock, we realized that the timing (as well as the gentle passing) was amazing. Dave already had a ticket to fly to Florida the next day to visit his parents. He already had the time blocked out for this purpose. It could have happened when he was in Brazil and totally engaged in ministry (which is the case most of the time). Dave stayed with me in Tahlequah Friday evening and flew out the next morning as planned, joining his brother and sister-in-law who had flown over from Texas. His sister Kathy will be arriving today from Bolivia and the memorial service is scheduled for Wednesday morning at 10:00 a.m.
Our daughter Rachel made a last-minute decision to fly up from Brazil, arriving in Tulsa Friday morning in time for the memorial service for her granddad that afternoon (thanks to the generosity of friends who paid for her flight). We have just bought a ticket for her to fly to Florida for her to attend the memorial service Wednesday for her other grandfather.
Early Saturday we drove with most of my brothers and sisters from Tahlequah, OK to Independence, KS to bury my father's cremains in the family plot. After lunch with relatives there, Rachel and I drove in tandem with my sister Karen and her children to Wheaton, spent the night there after delivering Ben and Jessica back to their dorms at Wheaton College, and drove to Pittsburgh yesterday (though not in time to see my son Dan, who along with two DC friends had spent the weekend with Karis but had to drive back to DC). Five of us walked into Karis's hospital room around 6:30 last night. Karen, Mike, and Bethany left for their home in New Jersey this morning (planning to stop by the house in Hershey, PA they're moving to next week), and Rachel is catching up on sleep before traveling again tomorrow to Florida (her flight leaves 6:00 a.m.).
So, what's happening with Karis:
1. The rejection is being treated with steroids and OKT3, the biggest gun in the anti-rejection arsenal. She's to have another endoscopy and biopsies tomorrow (Tues.) to determine whether this treatment is being effective. Concerns are increasing (rather than decreasing) abdominal pain, and increasing bleeding from her intestine. We don't know whether this is due to rejection or due to the problems in her small length of native colon. Based on the tests tomorrow, the treatment regimen will be reevaluated.
2. As I am writing this, a doctor is here trying to draw blood, since the nurses and the IV team have given up. They are not getting a blood return from her PICC (actually a mid-line catheter since no central access is available) nor from peripheral veins. So they haven't been able to do blood tests. The doctor has been trying for about half an hour without success yet.
3. Karis is very hungry, but everything she eats goes right through her. Weight loss is inevitable. She has had some headaches and fevers (side effects of the OKT3) and difficulty sleeping (side effect of the steroids). Her eyes are very tired, but she has maintained her cheerful spirit.
Hallelujah! I was just going to send this when the doctor got blood!! (Just as I wrote Hallelujah, the doctor said Hallelujah!)
Thursday, November 13, 2008
(Dave) Karis just had an endoscopy from above under anesthesia. It shows that she has ulcers all the way through her intestine from top to bottom. Rejection works its way from the bottom up, so this rejection is serious. Karis cannot lose this intestine without losing her life. The doctors have found no veins for a central line. Even if they looked harder and found one, she would not be a candidate for a new intestinal transplant because the other four organs that were transplanted would not handle a different intestine. So we need this to turn around and, if at all possible, quickly! The anti-rejection treatment is serious with serious side effects, some short term, others long term. For instance, Karis's loss of blood to her hips and consequent hip replacement is one of the side effects of rejection measures in 2004. Debbie and Rachel (who has come to the States in time for her grandfather's memorial service) will leave Oklahoma as soon as possible after the memorial service to drive back to Pittsburgh. Pray for all of us as we head into a new round of roller coaster ups and downs over which, once again, we feel no control.
Wednesday, November 12, 2008 ~ afternoon
(Debbie) Karis called a little while ago with results from the biopsies. She is in rejection. They will be starting the heavy anti-rejection medications this evening (OKT-3 and mega-doses of steroids). Dr. Kareem thinks the problem in Karis's small section of native colon may be Crohn's Disease. He is not sure yet what the implications of that may be.
Dave left for the airport just after that meeting with Dr. Kareem. He's coming to spend three days with me here in Tahlequah (we haven't seen each other for two months), including the Friday memorial service for my dad. After that he'll be spending several days in Florida with his parents (his dad is not well) before returning to Brazil. With Karis's current situation, it looks like I won't be returning to Brazil as soon as we had thought.
All of this sounds like a lot, but we have been surrounded with such love and care that the impact of it all has been diffused. We are so grateful to be part of the Body of Christ, here in Tahlequah, in Pittsburgh, in Sebring, in Brazil, and in every other place where people have cared enough to hold us up before God's throne. Thank you.
Wednesday, November 12, 2008
(Debbie) My father died at 6:00 this morning, very peacefully—one minute he was breathing, the next he wasn't. My brother Steve was with him at the time. We are planning a memorial service for 2:00 p.m. Friday.
Tuesday, November 11, 2008
(Karis) Hi! This is Karis writing, from my hospital bed on my father's laptop. I had a second endoscopy today, which showed that the treatment we have been following thus far has not been working. My colon is very diseased. My dad had to make a split second decision to miss his flight to Tahlequah to be with Mama and chose to stay here in Pittsburgh with me for a couple more
days. We have begun an IV antiviral treatment.
(David) P.S. Pain continues to roam between four and six on a scale of ten and Karis has had severe diarrhea. Pray that the 8 inches of colon can be recovered. If not, Karis may face another major surgery to remove it; we don't know yet whether that would require a new ostomy. In addition to severe ulceration in the colon, there is now some ulceration in the transplanted intestine. Possibly this is due to a virus called cytomegalovirus (CMV), although rejection is not yet ruled out. We hope to have the biopsy report tomorrow.
Friday, November 7, 2008
(Debbie) Karis is feeling some better, though still on IV pain medication, and has been able to eat a bit more. Her dad is flying from São Paulo to Pittsburgh tonight (arriving tomorrow) to be with her for a few days.
Some people who have been praying for us in regard to my dad have asked about my mother. She is here, in the same facility as my dad. She has Alzheimer's so it's hard to know what she understands.
Thursday, November 6, 2008
(Debbie) Friends in Pittsburgh are doing a great job of supporting Karis during this hospitalization. She's now on three IV antibiotics. She's had enough nausea and pain and diarrhea that it's been hard for her to eat, so she's been losing weight. The docs would put her on TPN but she doesn't have veins left for a central line (all of her major veins are obstructed with scar tissue). Please pray that she'll be able to tolerate food and start getting stronger.
Another challenge is that she's lost a lot of blood because of the ulceration in her small bit of native bowel. She'll be receiving a blood transfusion this morning.
My dad continues to bless us even as his strength is failing. Most of the time he lies quietly with his eyes closed and we can't tell whether he's sleeping or just resting. But when someone speaks directly to him, he smiles even before he gets his eyes open. His smile lights up the room. He is so warm and gracious with each person who comes to see him or to serve him in some way. It is a privilege to share this sacred time with him.
Tuesday, November 4, 2008 ~ p.m.
(David) Karis is improving and friends are taking good care of her in Debbie's and other family's absence. She got permission to leave the hospital and get off of IVs for an hour so she can vote. The pain which was up at 8-9 on a scale of 10 is down to 5-6. She's been given permission to eat supper today, so that may raise the pain. We'll see. (Two election officials went to Deb's Dad's room and helped him vote). :-)
Monday, November 3, 2008
(Debbie) After recovering from the bowel obstruction, Karis was able to travel to Oklahoma to visit her grandfather, who is declining quickly in his battle with two different cancers. It was wonderful that she could have this time with him—and very difficult for her to say goodbye to him yesterday, knowing that she will not see him again this side of Heaven.
Karis had to fly back to Pittsburgh yesterday because of intense pain in her lower abdomen, fever, and blood in her stool that made us worry about whether she might be in rejection. A scope and biopsies performed this morning eased that concern: her graft looks to be in good shape. However, the few inches she has left of her native bowel are in terrible shape, ulcerated and infected. Best guess at present is that the infectious agent is C.diff, and she is being treated for that while awaiting results from cultures. It's been tough for Karis to deal with the pain. She's asking for IV pain medication as often as she can have it.
Reasons for thankfulness:
- Karis was able to visit her Granddad
- Her Aunt Karen, who was also in Oklahoma, changed her travel plans in order to accompany Karis on her flight back to Pittsburgh so that she wouldn't have to travel alone while not feeling well. Karen spent the first hospital night and morning with Karis before catching a bus back home to New Jersey. We are so grateful for her kindness!
- Everything indicates that Karis does NOT have rejection, which is what we had feared.
- Kind friends picked up Karis and Karen at the airport in Pittsburgh and drove them straight to the hospital.
Prayer requests:
- For clear indication of the cause of the infection, and effective treatment.
- In the past, Karis has had unhappy reactions to Flagyl, the antibiotic of choice for treating C.diff. They are trying it again, with Benadryl and Tylenol, hoping that she may have outgrown her adverse reactions. Karis is a bit nervous about this.
- For my dad, in what appear to be the last days of his life. His children have gathered around him. Karis has so far insisted that I stay here with Dad, rather than returning to Pittsburgh to be with her.
Thursday, October 23, 2008
(Debbie) Karis had a clinic appointment today and was delighted to learn that she's gained four pounds! (She's been eating like a pig—her words—to regain the 12 she lost in the last few weeks.) She's still quite tired and needing to sleep a lot so she's on a trial to see whether the decreased dose of steroids she's on is adequate. Other celebrations: she is SO happy to be able to walk wherever she wants to go, or use the bus, and not have to depend on others to get around. She's very happy to be making progress on her thesis with a clear mind for the first time in many months, without pain or pain medications! Hallelujah! For the first time in recent history she feels like she can really start building her strength. To that end she bought a stationary air bike and put it together in her room. This will especially help her exercise regularly as the weather turns colder.
Dr. Kareem cleared Karis to travel to Oklahoma to visit her Granddad, who has been diagnosed with metastatic cancer. Please pray for us to figure out the best way to accomplish this. Pray for my dad as he faces this big challenge.
Sunday, October 12, 2008 ~ 10:20 p.m.
(Rachel) Karis is out of the hospital!!! She arrived safely back home a few minutes ago. We hope to hear more about possible causes of the obstruction tomorrow at clinic! She's back to eating soft foods - a remarkable improvement from eating nothing a few days ago!
Friday, October 10, 2008 ~ 9 p.m.
(Debbie) I just talked with Karis. She's doing better. She still had some signs of obstruction today so they did another gastrograph, from the top, that seems to have completely opened everything up. She's weak from having a lot of diarrhea, but the pain has eased a great deal. She hasn't thrown up all day. She thinks she'll be able to get the NG tube out tomorrow. Then we'll see how her intestine responds to being used again. We're hoping she'll be able to move back to 12 North where the nurses know her and the physical space is much nicer, but so far there hasn't been a bed available. I expect she'll be able to sleep much better tonight since the pain has eased.
Thursday, October 9, 2008 ~ 4 p.m.
(Debbie) Dr. Wu just came by and said that Karis's pancreas numbers are back close to normal. Yesterday they shot up to 15,000, which probably accounts for some of the pain and vomiting which continued through the night. But it was apparently just a function of the stress on her system from the obstruction. Today she is doing some better and of course is exhausted. She's still draining a fair bit through her NG tube and has a hard time tolerating the 20 minutes they try to keep it closed when she takes her pills.
If things continue in a positive direction, I still plan to go to Oklahoma tomorrow for a week to help my dad move. I know Karis will receive TLC from her Pittsburgh friends.
Wednesday, October 8, 2008 ~ 9:15 p.m.
(Debbie) Our friend Martha is keeping Karis company for awhile, so I have come home to get some sleep. Karis was sleeping when I left—she is completely exhausted and is dehydrated, now that her intestine has started to open up. She's been vomiting copious amounts all day, in addition to large amounts that an NG tube has drained from her stomach as the pressure from the obstruction forced intestinal contents backwards.
This has been a sobering experience, both because of the suddenness of onset and the intensity of the symptoms. I've seldom seen Karis so frantic over pain. (She was given some pain medication early on, but as her symptoms worsened, the docs pulled back to not further complicate her problems. Once things opened up, they let her have pain meds again, so I think she'll be able to sleep tonight.)
I haven't heard details of all the tests that were done, but what I understand is that the obstruction was caused by adhesions (new ones, since this last surgery), and they were finally able to force the intestine open from below by using a heavy contrast under some pressure. (The endoscopy Dan referred to was done earlier, to make sure Karis's symptoms were not caused by rejection.)
It will take some time for Karis's abdomen to decompress, and they'll be keeping a watchful eye on her fluid and electrolyte balances as this process takes place. They started a second IV line this evening in order to replace her fluid losses faster than one IV can accomodate. She's still draining a LOT from the NG, as well as having copious diarrhea now that she has an open system.
I don't know how many days Karis will need to stay in the hospital to recuperate from this frightening obstruction, but I'm guessing at least through Saturday. The disappointing thing about all this is that she won't be able to fly with me to Oklahoma on Friday to visit my dad (her grandfather). I'm sure she'll find a time and way to visit another time but she had so looked forward to this trip. I'm glad this obstruction didn't happen in Tahlequah (or anywhere else). I am SO relieved and grateful that she's getting better!
6 p.m.
(Dan) Karis's obstruction finally opened up during the endoscopy. While exhausted, she is feeling MUCH better. We're looking forward to hearing more from the doctors on what they make of the whole episode, which was considerably more painful than even Karis is used to. But for now, it appears that surgery will not be necessary.
4:30 p.m.
(Dan/David) Karis has been in the hospital since late Tuesday night with an extremely painful obstruction. They are doing an endoscopy test now. Unfortunately they are not giving her pain medicine because they think it might make the obstruction worse.
Thursday, October 3, 2008
(Debbie) We just got home from clinic. Karis got some of her stitches out! But now she needs to wear a binder for extra security while her tummy continues healing. Karis's main issue now is ongoing adjustment to not having an ostomy. Various medications were adjusted and she will have to come back from the church retreat on Saturday morning for blood tests (since they're trying to regulate her anticoagulation therapy), but overall she's doing well! Please don't worry if we don't update for the next few days—assume that it means Karis is fine.
Monday, September 29, 2008
(Debbie) It is SO lovely to be out of the hospital. We didn't expect it to happen yesterday because Karis has had a lot of pain each time she eats something. But when the Dr.
asked her whether she felt ready to go home, she said yes so he said OK and pulled her PICC (IV line in her arm). She'll have the whole day off today (Monday), blood tests tomorrow, and Dr.'s appts both Wed. and Thurs. She's hoping to start back into physical therapy this week along with what she can do at home to strengthen her body, combined with rest and getting back to some work. We hope she'll be well enough this next weekend to attend Ascension's annual retreat.
Imagine the joy of sleeping at night without vital sign checks at midnight and 4 a.m., IV meds at 2 a.m., blood draw 4 a.m., oral meds 6 a.m., etc.! (We've reorganized her med schedule to begin 8 a.m.) The first thing Karis did when we got home was take a long lovely nap, then a wonderful dinner with Battle and Carol, and by 9 p.m. she was asleep again. I had to wake her up once for meds but otherwise she's been sleeping all night. Praise God from whom all blessings flow!
Sunday, September 28, 2008 ~ 3 p.m.
(Debbie) Karis is going home!!!! We just received this surprising news!! Hurrah!!
Friday, September 26, 2008 ~ 7 p.m.
(Debbie) Karis has gradually been doing better today. This morning she had some ice chips. This afternoon she was allowed to start drinking some clear liquids (water and tea). That went OK, so her diet has just been expanded to full liquids (right now she's enjoying some chicken broth). If she can eat without further problems over the next day or two, she can go home. She's breathing well and they plan to pull the pigtail drain tomorrow.
One more blessing: her brother Dan is coming for the weekend!
Thursday, September 25, 2008 ~ 11:30 p.m.
(Debbie) Karis was in so much pain early afternoon that Dr. Costa finally gave her IV Dilaudid (which they had been avoiding because narcotics slow the intestine). That combined with benadryl for her Vancomycin infusion allowed her to sleep this afternoon—a great blessing because she didn't sleep last night. Pain woke her up when the Dilaudid wore off; her tummy still big and hard into the early evening. She's had three doses of IV Dilaudid since waking up, and we've been trying to keep her mind off of her achy tummy by laughing at the Cosby Show marathon on TV. In the last hour her intestine has opened up a bit, so that is encouraging, even though the pain is still intense.
Dr. Costa came by to say that the CT scan done this morning did not show any mechanical reason for the obstruction—her intestine simply "froze," stopped functioning, and all we can do is wait (and pray!) until it resolves itself. We don't know why this has happened, and of course this is a bit freaky because the reason they did the surgery three weeks ago was because of repeated episodes of obstruction. When they opened her up they found ample explanation for the obstructions she had been suffering, but supposedly that was all dealt with in the 14 hours of surgery.
We appreciate your prayers and hope to understand all this better tomorrow.
noon
(Debbie) A pigtail (drain inserted in the space outside the lung) was inserted yesterday and has drained half a liter--not a lot, but Karis's breathing improved during the day until she was able to take a walk without oxygen in the evening and visit another patient on the floor (a gal from Saudi Arabia having complications from a liver transplant—please pray for her). Karis felt good enough to ask me to bring in some of her Arabic books today. Up until now she hasn't been successful in reading, though she's been able to track being read to.
While her breathing was improving, however, Karis's intestines were shutting down. She spent a miserable night and morning with her tummy distended and painful. We don't know yet what is causing this—they're just calling it an "ileus." Just in the last half hour it has started to resolve, though she doesn't feel better yet. They're keeping her NPO (nothing by mouth) today.
Wednesday, September 24, 2008 ~ noon
(Debbie) It's a little tricky doing these updates because some people want more detail and some less. Bottom line: Karis is still having some problems so she can't go home yet. If you want the detail, read on.
Problems:
1. Still having some breathing problems, particularly when her heart rate drops, which it does from time to time. This may be related to
2. low potassium (she's getting two IV treatments today plus pills plus powder stuff to drink, as well as a mag run, tho her magnesium isn't as low), and/or
3. fluid around her lungs—mostly left side but some on the right too. She's just been taken down for an ultrasound to determine whether it's worth inserting a pigtail to drain the fluid. (She's back to normal weight and may dehydrate if she has more lasix.)
4. Her EBV, which is tested once a week, came back 56,000 this morning. They're switching her to IV treatment for a few days instead of pills. Kareem says he's not worried about it but we need to get it under control. This can be done outpatient so it won't keep her in the hospital.
We're happy that:
1. Her steroids have been switched from IV to pills and the dose is going to be cut again tomorrow.
2. She's hungry again and eating more (trying to avoid sweets because of blood sugar).
3. The diarrhea is under better control and she's feeling optimistic about that working out.
4. Though she doesn't have much energy yet, in general she's feeling good and hasn't needed pain medicine for several days.
5. The nurses on 12 North are wonderful.
Karis asked me to say thank you to everyone who has sent cards and e-mail messages and food. Timmy Podnar makes awesome soup!
Tuesday, September 23, 2008 ~ 9:45 a.m.
(Debbie) The resident just came in and told us that the CT yesterday showed a collection of fluid around Karis's heart, which is why they did the echocardiogram. But the lasix treatments seem to have dried her out, since she's clinically so much better. The pleural effusion is actually reduced and her lungs look better. He's going to evaluate everything and then talk with one of the attending docs about whether she can go home today. Meanwhile she's having one more round of lasix.
8 a.m.
(Debbie) Yesterday was an interesting day. When I got here in the early morning, Karis was asleep but was breathing very fast. I checked her oxygen saturation and it was low even though she was on 3 liters of oxygen. Just then the resident came in. He cranked her up to 5 liters (the maximum allowed through a nasal cannula) but her stats still wouldn't go above 92. At the same time her heart rate was in the 40s, but when she got up to go to the bathroom, it shot up to 110 and she was panting. The resident ordered a stat lung x-ray (that means do it immediately). Before the x-ray team arrived, however, Dr. Kareem made one of his surprise appearances, cancelled the x-ray and ordered a stat CT scan.
While waiting for the "immediate" CT scan, Karis had another albumin spa with lasix and peed off a couple more liters of fluid. By the time she went down for the CT, she was feeling much better. The CT showed a collection of fluid in her chest (where exactly, we haven't been told) that inspired the docs to order an echocardiogram, which actually happened in the afternoon. By then Karis had perked up a lot, was down to 1 1/2 liters of oxygen, felt like all this was much ado about nothing and she thought she could still go home. During the echo, however, her heart rate was 41, and it dipped to 38 at one point.
After the echo we went back to her room, checked her stats OFF of oxygen, and she was fine! She spent the rest of the evening and all night last night off of oxygen! An amazing turn of events in just a few hours! She was allowed to take her first shower since the surgery (pure bliss), ate her best dinner since surgery, had another lasix treatment (two more liters off), and a good night's sleep, with her vital signs all normal, including her heart rate back in the 70s.
We have not seen a doctor since yesterday morning so have no explanations yet of anything. Tune in later for the next edition of the Karis Kornfield roller coaster.
Sunday, September 21, 2008
(Debbie) This has turned out to be kind of a hard day for Karis, so I doubt she's going home tomorrow after all. Her weight is up a couple more pounds and she's been very uncomfortable and short of breath; back on oxygen even while awake. Treatment is underway but we don't know how long it will take. She's also needed potassium and magnesium infusions, which has kept her attached to the IV pole more than yesterday. Two steps forward, one step back . . .
Saturday, September 20, 2008 ~ Congratulations Michigan State <:-|
(Debbie) A sign on Karis's message board says:
"Dr. Bond, my puzzle is done—you should let me go home." Jen helped her finish a 1000-piece puzzle this afternoon. We were joking that the unfinished puzzle was keeping Karis in the hospital.
Dr. Bond, though, says she needs a couple more days here, for some "fine tuning." Karis has accumulated a lot of fluid again—ten pounds over the last 3 days—so she and Lasix are working to get rid of that. It's a beautiful day and we enjoyed a walk outside while Karis was off IV's for awhile (all the way to the Children's Hospital Plaza). She got a little short of breath but loved being outdoors. They've started weaning down the steroids, thank God. Karis is having some trouble with high blood sugars; I don't know whether we'll have to do glucose testing and insulin at home for awhile until things even out. She's been advanced to a regular diet, with the admonition to be sensible. We were watching the Notre Dame game when Dr. Bond came by so forgot to ask about the lung x-rays, so I don't know the status of the pneumonia, but Karis has been off of oxygen during the day today.
Thursday, September 18, 2008 ~ 10:15 p.m.
(Debbie) After an active day yesterday, it's understandable that Karis would need more rest today. Her white count was down to 25,000 this morning, so the antibiotics are definitely winning out over the bacteria, including those that have grown in the blood cultures (pointing to an infection from the old IJ in addition to the pneumonia).
To get out of the hospital, Karis needs to:
1. Have white count down to 10,000 or close to that.
2. Have three negative cultures.
3. Get off of oxygen (doing better today).
4. Be eating well.
We're on our way! The diarrhea has improved the last couple of days, which is very encouraging. I'm guessing she'll be free early next week. Karis hopes to talk with the docs tomorrow about cutting the dose of steroids, since she's already starting to feel some unhappy side effects.
Wednesday, September 17, 2008 ~ 11 p.m.
(Karis) Thank you all so much for your prayers and support. This is an exciting turning point for me because I've lived with an ostomy all my life and now it's been closed. Rejoice with me in the chance to live more normally!
I spent this afternoon (the part when I was awake) reading one of my best friend's poems and playing chess with my mom, in which we battled each other down to two players, grrr. (Observation by Debbie, who is typing for Karis: she next mumbled a bunch of unintelligible words which ended with a little dance around her IV pole. She's currently receiving a unit of blood.)
About the pneumonia: my white count is down from 54,000 to 36,000 (normal high is 10,000), so we're making great strides in conquering this little problem. I ate a lot more today than yesterday so I'm hoping soon to get out of the hospital. I'm planning visits with my mom to my Granddad in Oklahoma and my brother in DC as soon as I can work it out.
There's a lot more to say, but my pillow is calling. Good night!
(Debbie) The doctors commented today how nice it is to see Karis's smile back!
Tuesday, September 16, 2008 ~ 8:15 p.m.
(Debbie) It's been a good day—so nice to have Karis "with" us again. She's been up most of the day, no more fever, and has eaten her first solid food. She has a new PICC line in her right arm but it's called a midline rather than a central line because obstruction prevented threading the line all the way to her heart. This means that it can't be used for TPN. She has no available access for TPN right now, so please pray that she will be able to eat, enough to supply her caloric and nutritional needs. She's to eat 7-8 small meals per day, which doesn't fit too well with the hospital routine, so I plan to spend a bit more time at home shopping and cooking so that I can bring food to her here. Her allergies to dairy and eggs limit her options here for nutritious snacks.
The swelling in her shoulder and upper chest is already going down, and since the fever hasn't come back it seems she's on the right antibiotics for the pneumonia. As I've already commented, the doses of steroids (Cortef—hydrocortisone) she's had have been transformative. I wish you could see her now, happily talking with her brother on the phone, as if the last few days had never happened!
7:00 a.m.
(Debbie) Karis is back!
At 4:00 a.m. she woke up, bright, alert, and cheerful, wanting to get out of bed, wanting to know what had happened to her and why she has an IV in her leg. It's been many days since I've seen her like that. We talked for awhile and then she went peacefully back to sleep. My heart was greatly cheered and I hope yours is too. Amazing what one dose of hydrocortisone can do (she's receiving her second right now).
Truly we are fearfully and wonderfully made.
Monday, September 15, 2008 ~ 1:15 a.m.
(Debbie) Her fever broke, soaking her body and hair and bed with sweat. Praise God!
midnight
(Debbie) The last hour has been busy but we've made a lot of progress:
1. The CT scan showed that Karis's tummy is fine (hallelujah!) but she has an aspiration pneumonia in her left lung and a pleural effusion on her left side (extra fluid in the cavity around the lung). This explains why she's had to go back on oxygen. From the outside, we've been seeing her left shoulder and upper chest becoming very swollen and Karis has complained of pain and heaviness in that area all afternoon (when she's been awake enough to comment).
2. Somehow that swelling seems to be related to her IJ (central line in her neck), because the last time the nurse tried to use it Karis felt intense pain in her upper chest (enough for her to break out of her lethargy and yell). It's not clear to me what has happened anatomically but maybe tomorrow I'll be able to understand this better (if someone has time to explain it). In any case, Dr. Kareem burst in, said "take that IJ out," and ordered the resident to put a new line into her left femoral vein (then Dr. K returned to the OR where a transplant is in progress). The resident wasn't able to get a central line in because of hitting obstruction (no surprise there), but he was able to get a simple IV into the femoral, which they are using now for the antibiotics to fight the pneumonia. Tomorrow they'll have to go after finding a place to insert another central line, when they can use x-ray and not just a bedside insertion.
3. Dr. Kareem told us she has adrenal insufficiency, which explains why she's been so lethargic and sleepy. They'll be starting treatment for that once the antibiotics are in. He says the stress of the surgery has caused this. Can't say we're happy about her needing steroids again, but her body's not making enough on its own at present.
4. With extra Tylenol (ordered by Kareem), her temp has started to come down; last measured at 102.9 and hopefully continuing that direction.
I'm relieved to know what's wrong, to have treatment started, to have that IJ out, and the hope of getting her out of the doldrums she's been in the last few days. Thank you for your prayers.
10:00 p.m.
(Debbie) Tylenol isn't helping Karis's fever, so we're doing ice packs. Last check was 103.7. Thanks for your prayers.
6:45 p.m.
(Debbie) Karis developed another fever early afternoon and it has risen thru the afternoon, despite Tylenol. She's had blood drawn for cultures has just been taken down for a CT scan to see whether there is infection in her abdomen. She's been more awake this afternoon, so maybe those two meds that were held today are the sleepiness villains. Please pray that whatever is causing this fever will be identified quickly so that it can be appropriately treated.
10:30 a.m.
(Debbie) Karis slept the weekend away and is still waking up only when someone wakes her up and then only briefly, falling asleep again mid-conversation and unsteady out of bed. The doctors are adjusting her medications because it seems one or more of them must be causing this exaggerated drowsiness. She spiked a fever last night but it came down with Tylenol and hasn't come back, so the docs don't seem concerned. We're going to try giving her some soft food today. Nausea is no longer a problem and her diarrhea seems to be some better. They're constantly correcting one or another electrolyte imbalance but basically her labs are pretty good.
Various people have asked about Karis's thesis. She hasn't had energy yet to check her e-mails so she doesn't know whether her adviser has given an evaluation of her work. But her dean told me that they are giving her another extension in order for her to complete her work more adequately. The university has extended much grace!
Saturday, September 13, 2008 ~ 8:30 a.m.
(Debbie) Yesterday afternoon Dr. Kareem pulled the two remaining JP drains and increased the medication to try to control her diarrhea. Her nausea eased during the afternoon so she was able to take her evening meds without difficulty (even the big fat one, David) and we're no longer worried about getting the NG tube back. During the evening Karis had an allergic reaction (hives), but we can't figure out what caused it. Benadryl dealt with the hives, but she's still itchy. She's also been very sleepy, since yesterday afternoon. She hasn't been able to stay awake even to talk with visitors (including Tina, whom she hadn't seen for a long time). They've stopped all pain medications in an effort to help her wake up. This morning her oxygen saturation was low (86) so she's back on oxygen (I think it's just that whatever is making her sleepy has also made her breathing lazy--she's not in any kind of evident respiratory distress). It's all a bit confusing at the moment. Her hemoglobin is low so she'll be having a blood transfusion today.
Several times we have asked for prayer for our friend Larry (Carol's brother-in-law). He is here—two rooms down from Karis. He has an infection in his liver. Please pray that this can be dealt with and that he can get back on the transplant list.
Friday, September 12, 2008 ~ 11 a.m.
(Debbie) After throwing away Karis's afternoon meds (which she didn't manage to swallow), the night nurse said if she couldn't get the 8:00 p.m. meds down they would have to reinsert the NG tube, because she needs these medicines. It took Karis four hours, but by midnight she swallowed the last pill, and with the help of Zofran (anti-nausea med), she didn't throw up. Now we're in the same struggle with her 8:00 a.m.
pills. She's gotten about half of them down so far. The Fentanyl patch hasn't been enough; she's needed extra pain meds IV as often as they will give them. Her other battle is with constant diarrhea, which she isn't used to managing the way she has to now that her ostomy has been reversed. All to say—if she doesn't answer her phone, or if I do it for her, she's just not quite up to snuff at the moment. Thanks for your patience and your prayers.
One very positive thing we have going for us is that the nursing care on this unit (12 North) is exceptional in our experience. We're very grateful to be on this unit. I can go home to sleep at night with confidence that Karis is in good hands. That helps so much.
Thursday, September 11, 2008 ~ 6 p.m.
(Debbie) It's not clear whether Karis's NG tube was pulled too soon. She's been battling nausea all night and today and has thrown up once—which relieved her discomfort enough to let her take a nap. It's been very difficult to get her oral meds down. We're in "wait and see" mode. Her Dilaudid PCA (patient-controlled analgesia) has been replaced with a Fentanyl patch. She's being treated for dehydration today. She had been retaining fluids but the treatment for that went too far the other way. Medicine is far from an exact science!
Wednesday, September 10, 2008 ~ 8:30 p.m. (posted 9-11)
(Debbie) Karis made huge strides today:
1. She's no longer using oxygen.
2. Her NG tube (or as she calls it, her "nose hose") was pulled.
3. Two of her four tummy drains (JPs) were pulled.
4. We went for a walk this afternoon to a little
garden connected to the hospital.
5. Tonight she went with us (partly walking,
partly wheelchair) through the walkways to the
Presby cafeteria, where Dave and I ate supper while she sucked on some ice. (She has to go 24
hours without throwing up before they start letting her drink a little bit.)
6. Without so many tubes to deal with, she can
now get in and out of bed by herself.
7. She continues cutting down on her pain medication.
God is good to let Dave see all these things
happen before he travels back to Brazil tomorrow (9-11)!
Tuesday, September 9, 2008 ~ 5:00 p.m.
(Debbie) Karis slept solidly all morning and woke up feeling good enough to walk down the hallway and back and then get her hair washed. Her next big milestone will be getting her NG tube out, but I don't know how soon that will happen—it's still draining a good deal and it's hard for her to tolerate having it closed. She's definitely brighter and more alert than she was, due to needing less pain medicine—all to the good!
Some people have asked for Karis's hospital address:
Rm 1269, Montefiore Hospital
200 Lothrop St.
Pittsburgh, PA 15213-2582
You can call her cell phone, and if she's not up to answering it, feel free to leave a message. She has started enjoying having visitors.
Monday, September 8, 2008 ~ 11:15 a.m.
(Debbie) Hallelujah! Karis has just been moved out of ICU into a lovely bright room on the 12th floor, with a big window and a nice view. Such a sense of freedom! She continues progressing well and is moving around in bed more easily, needing less pain medicine. I think she'll make even faster progress up here.
Saturday, September 6, 2008
(Debbie) Karis is sitting up in a recliner (as she did yesterday for 5 hours!) while she receives a blood transfusion and a bottle of albumin (protein) to supplement her TPN. We tried to take her off of oxygen this morning but she wasn't quite ready for that. Yesterday she had too much pain to be able to enjoy being read to, but today her pain is under better control so we've been reading a fun book out loud. She's started saying she wants to get out of ICU and I heard a doctor say maybe tomorrow.
Friday, September 5, 2008
(Debbie) Karis continues stable but is feeling a lot more pain today, since the anesthesia has worn off. The amount of pain medication she needs may be a limiting factor in how quickly she can move out of ICU. Goals for today include getting her out of bed and moving around a little bit. She needs Benadryl to prevent an allergic reaction to one of the meds she's receiving so that keeps her pretty groggy.
Thursday, September 4, 2008 ~ 4:30 p.m.
(Debbie) Karis says thank you for all the prayers on her behalf, and asks you to pray for her granddad, Ray Elliott, who is facing some medical challenges of his own right now. Thanks.
(Debbie) I'm sitting beside Karis's bed in the TICU (Transplant ICU). She's taking a nap now, but awake enough when we came in to ask for details of the surgery. She had just been extubated (taken off the respirator). She looks wonderful—we'll send a picture as soon as we can. This evening they're going to start her on TPN, since it will probably be a week or so before her intestine wakes up. The TICU restricts visitors (including family) much more than Children's ICU. We can only visit during certain hours. She has her own separate room so it's calm and quiet, very different from the ten-bed wards at Children's. We don't know yet how long she'll be in ICU, but things are going very well. Our greatest prayer is that this will be an entirely uneventful recovery!
Wednesday, September 3, 2008 ~ 11:45 p.m.
(Debbie) We spent a few minutes with Karis. She's still sedated and paralyzed and intubated, and will be kept that way through the night. She has lines and tubes and drains all over the place, of course. They expect to take her off the respirator some time tomorrow. And now it's time for all of us to sleep.
10:40 p.m.
(Debbie) We just got the word that Karis is out of surgery! An exhausted Dr. Kareem came to talk with us a few minutes ago (Dr. Bond was the other main surgeon today). Sounds like a very good thing they did this surgery. He said her insides were a huge mess, with intestines wrapped around and through the liver and various other organs completely stuck together. That's what took them so long. He said it was hard to even determine what was what. He had to do major repairs in her lower abdomen and some parts were not salvageable. But he thinks she's going to feel a whole lot better, once she recuperates from the surgery.
The three main objectives of the surgery were accomplished:
1. Dealing with adhesions (this took the greater part of the day).
2. Closing her tummy muscles (although one part was unusable and they had to use mesh for the central part where there was only scar tissue). Kareem says he's quite sure she's going to like the result.
3. Reversing her ostomy (this will be
revolutionary for her, tho he says it will take a while for organs that haven't been used for 22 years to "learn" how to function again).
It's been a long, hard day for the surgeons—13 hours of surgery, plus the preparatory time in the OR before the first cut. Her transplants took about the same length of time. Pray that everyone will be able to rest well tonight. We'll send one more update tonight once we're able to see Karis, which they say should be in about 45 minutes.
9:30 p.m.
(Debbie) Hurrah—we actually got to talk with a real live person! The charge nurse from ICU came out to escort us to the ICU waiting room. He said the surgery will probably go until about 11 and then she'll go directly to ICU. Once she's settled there, we can go in to see her briefly but they don't let people stay overnight. He said she's doing OK, which was really nice to hear, but that she'll probably be in ICU for several days. Access to the ICU is more restricted here than it was at Children's: we can only visit at specified times. It's so good to have a better idea of what's happening.
8:00 p.m.
(Debbie) After several hours without any information (if you call what we've received all day "information"!), Dave just called the OR and was told the surgery might be a couple more hours and she'll be going to ICU. That's all we know. As soon as we know something more, we'll let you know.
4:00 p.m.
(Debbie) "She's stable, and it will be a while longer."
1:30 p.m.
(Debbie) We were just given a report from OR:
simply, "surgery is progressing."
10:45 a.m.
(Debbie) We were just informed that surgery actually started at 9:46.
8:50 a.m.
(Debbie) Karis was just taken to the OR. I don't know the reason for the delay.
Correction: I just learned that Karis went into the OR at 8:23. They just didn't let us know right away.
7:00 a.m.
(Debbie) We've just come into the waiting room at Presby where we'll be spending the day (the surgery is being done at Presby not at Montefiore--apologies to those whom I gave the wrong information). Karis was taken to the Pre-Op area where parents aren't allowed, a bit slap-happy after pulling her second all-nighter trying to whip her thesis into shape. She sent off over 100 pages this morning but still has a few sections that need more work. She's hoping to have another shot at it before the 8th.
We talked briefly with Dr. Kareem, who still didn't know the results of the exam done yesterday which will determine whether they attempt reversal of her ostomy. He said if that is done it will be toward the end of the surgery, so he will be talking to the doc who did the motility study later on in the day and make the decision at that point. Karis will have to go under anesthesia without knowing whether they will attempt the reversal or not. Please pray that the doctors will know clearly what they should do (or not do). He thinks the surgery will be about ten hours, starting around 8:00. She'll then go to the recovery room for
2-3 hours and only after that will we be able to see her.
We have internet access here in the waiting room, so as we are informed of progress during the day I'll let you know. I think they'll communicate something from the OR every couple of hours.
Tuesday, September 2, 2008
(Debbie) Karis was hospitalized over the weekend, which frustrated her efforts to finish her thesis because they gave her Benadryl to prevent reaction to one of the medications. She pulled an all-nighter last night and is taking a nap now before tackling it again (after a trip back to the hospital for a needed pre-surgery exam). She'll work tonight "until she crashes,"
and then send in whatever she has and hope it's enough to pass. She's to be at the hospital at 5:30 a.m. and the 8-10 hr. surgery is scheduled to start at 8:00 a.m. Either Dave or I must be in the waiting room as long as she's in surgery--we're looking forward to spending the day together. I'm grateful he can be here!
Particular prayer requests:
1. It's a long surgery, so keeping her "under"
will be a challenge, due to her low blood pressure.
2. She'll probably bleed a lot, since she's on anticoagulants. Pray that the transfusions she receives will bless her body and not introduce any damaging substances.
3. Pray for the surgeons to make good decisions and to successfully manipulate her intestines without damaging them.
4. Pray that her body will cope with this "assault" and not throw her any curve balls.
5. Karis's tummy has been operated on so many times that it's hard to imagine that it will be able to heal back together again. Please pray for protection from infection in the surgical wound and that ways will be found to compensate for areas that are entirely made up of scar tissue.
6. Pray for strength and alertness for the surgeons. This surgery is tedious and exacting. I would love for them to be aware in some concrete fashion that people are praying for them.
7. Pray that her abdomen will be very slow in developing new adhesions, so that she can have as long a period as possible free from obstructive issues.
Thank you SO much! We are so blessed and privileged to have your support.
Friday, August 29, 2008
(Debbie) Karis has not been well since she came home from the hospital a week ago. Yesterday Dr.
Kareem decided to go ahead and schedule surgery for her—for next Wednesday! We did not expect this, nor spending most of the last three days at the hospital. We have been asking God for clarity about next steps, but didn't expect the answer to come so dramatically.
We'll be moving out of the apartment tomorrow, back to the Browns' house, where we lived during the long months and years of Karis's transplants. God did a wonderful thing: as we were debating whether to put Karis's furniture into storage or sell it, we became aware of a family moving to an apartment here in Pittsburgh exactly tomorrow, who can use all of Karis's things! It's so fun to be part of the big family of God, and watch him orchestrate resources for each of our needs.
Dr. Kareem says that Karis's surgery Wednesday will take 8-10 hours. He will clean up her adhesions (presumed to be the culprits in the bowel obstructions she's been suffering) and attempt to close her tummy muscles. You may remember that the organs she received in her second transplant were too large to allow closure of her abdominal muscles at the time. It will be wonderful if this can now be done successfully.
If all goes well, she'll be in the hospital about a week following surgery, and then need several more weeks to recuperate at home. Dave had planned to fly back to Brazil this Monday, but is changing his plans in order to be of support to us for at least a few more days here. Rachel flew back to Brazil Wednesday, and Valerie to Italy last Sunday, where she'll be studying this whole next year at the University of Bologna.
Besides the upcoming surgery, Karis's big prayer request is for completion of her thesis, which she will now have to turn in before Wednesday because she won't be in any shape to keep working on it after surgery (the absolute deadline is Sept. 8). She's coming down the home stretch; pray for energy to be able to complete it in a way that satisfies her. That will be a truly marvelous accomplishment.
Friday, August 22, 2008
(Debbie) Karis was released from the hospital late this afternoon, once the docs were satisfied that she was stable enough to come home. She's very happy to be free again!
Thursday, August 21, 2008
(Debbie) Karis has been sleeping all morning, still exhausted from obstructive episode. A doc just came by saying they need to keep her in the hospital a little longer. She's still not fully rehydrated from all the fluids she lost, and her EBV has continued to climb--now 25,000, despite IV meds. The docs are debating whether to let her try to eat something. Her scope & biopsies yesterday (checking for rejection) were perfect, so they may try lowering her immunosuppression one more notch to give her body increased ability to help fight the EBV. Her platelets and potassium are in normal range at the moment so they're easing off on those meds.
Wednesday, August 20, 2008
(Debbie) Karis did well while we were traveling. A few hours after Rachel, Valerie, and I landed in DC from Guatemala this morning, however, we received a call from a friend saying Karis had been hospitalized with a bowel obstruction. We drove from DC to Pittsburgh this afternoon after Dave's flight arrived from South Africa (via London) and are with Karis now. She's doing better. The obstruction resolved spontaneously this afternoon and she's receiving IV's to compensate for the dehydration that usually accompanies these painful events. They're giving her IV Gancyclovir also, to try to bring her high EBV level down. Otherwise things have been going well, and Karis has been working hard on her thesis (63 pages written so far). We're happy that she stayed well while we were gone!
Thursday, August 7, 2008
(Dave) Karis just had a check-up with the transplant team. She's doing well overall, with more energy and ability to focus. Until this weekend she had trouble reading more than a paragraph, but that seems to be improving as she works to recapture temporarily lost ground. She's working hard in PT, walking now faster and with better balance. She's still battling high platelet, EBV, and potassium levels, but these things are not making her feel sick.
The rest of our family will be leaving Pittsburgh tomorrow, returning Aug. 20 from Guatemala (Deb, Rachel, Valerie, Dan) and South Africa (Dave). Karis will have friends staying with her while we're gone. If there are no updates during that period, please know that things are going well.
Wednesday, July 30, 2008 ~ Happy Birthday to our son Dan!!
(Debbie) Two steps forward, one step back. As long as we are moving forward, we shouldn't get discouraged about the persistence of challenges along the way. I just talked with Karis's transplant nurse (the wonderful gal who keeps track of all the details and helps us implement what the doctors order). Karis's EBV had gone down to 5,800 (goal: under 200), but this last blood test shows it back up to 16,000. She can't take a higher dose of the antiviral medication, so if the EBV persists high they're going to try to wean back her immunosuppressant (Prograf) so that her body can better help fight the virus. This is a delicate process since we don't know exactly where the line is that will put her into rejection. However, a lower Prograf level will be easier on her kidneys. Karis's potassium is higher again also, so she's on a restricted diet, which accomodates the diet restrictions required by Coumadin, which she is being switched to off of twice-daily injections (nice to be getting rid of those!!) for anticoagulant therapy.
GOOD NEWS: her platelet level is now in the normal range! For the time being she's off the platelet-killer medicine. We're working with two medications to try to pull out of the depression, hoping that soon she'll be capable of getting back to work on her thesis and conquering that last requirement for her "true" graduation from ND! One step at a time . . .
Friday, July 25, 2008
(Debbie) Yesterdays blood tests were encouraging: Karis's platelets are down to 424,000!! Hurrah! The docs allowed her to cut back on one of the three meds they're using in relation to this. She felt better after receiving IV fluids yesterday. Needs to return for blood tests again tomorrow and clinic again on Monday (we seem to be on a yo-yo between home and Montefiore!).
We're so grateful for God's protection during the days that Karis was so vulnerable to forming blood clots, which could have gone to her heart, lungs, or brain. It's good to breathe a sigh of relief that she's no longer in the serious danger zone. Thank you for your prayers.
Thursday, July 24, 2008
(Debbie) People have been asking whether Karis's numbers have continued to improve. Yes, though there's still a ways to go. Last tests showed platelets down to 750,000 (from over a million; goal: under 400,000), EBV down to 7,500 (from 23,000; goal: 100), hemoglobin up to 10.4 (from 7.6; goal: 11 or higher), potassium down to 5.0 (from 5.2; goal: around 4). She'll have blood tests again today. We're having to work to keep her hydrated, perhaps a side effect from some of the meds. Karis is putting her limited energy into physical therapy. She has more freedom of movement and has stopped taking regular pain medication.
We're very much looking forward to getting her off of some of the strong medications she's taking. One side effect is depression, a purely chemical reaction that has hit her sideways and has made things extra challenging at the moment. Karis has not been up to answering her cell phone or taking initiative toward anyone. She just needs a little time to get her body chemistry sorted out. This will pass. We know you'll understand and until it does, not take her withdrawal personally. If you really need to communicate with her, please for the moment use my cell: 574 339-3350.
34 family members –including me– will be gathering in Guatemala in August to celebrate completion of the Nebaj Ixil-Maya New Testament, my dad's life work! I'll be gone from Pittsburgh Aug. 8-20 unless there's
an emergency situation. Please be praying that the medicines will be effective, that Karis will soon be
free from them, and that no other complications arise.
Thanks! See www.IxilFund.org/IF
Sunday, July 20, 2008 ~ 9:30 a.m.
(Debbie) I just heard from Dave that Karis is indeed coming home today; her platelet count is down to 840,000. Hurrah!
Sunday, July 20, 2008
(Debbie) Dave has gone early to the hospital hoping to be there when the doctors make morning rounds. We hoped Karis would be able to come home yesterday, but despite high doses of medications, her platelets were a little higher yesterday than the day before (tho less than a million, which seems to be the "worry number"). Not having a spleen complicates the situation, because the spleen normally removes old platelets from the blood. (Her spleen was removed during the multivisceral transplant.) If today's numbers show a trend downward, they'll probably let her out. Tests showed NO clots formed or forming in her legs, which was a big relief.
Everything else is going well. Karis has been walking around and around the unit on her crutches. 16 times around makes a mile; I don't know how many miles Karis has walked (other patients have started saying "there she comes again"). She's moving much more easily and the pain has eased enough that she has started refusing her pain medication. She's anxious to get back to physical therapy and to the activities she was beginning to feel well enough to resume, excited to be walking better than she has since before her first transplant (August of 2004). Her physical therapist has said she'll need three months of work to strengthen her muscles and correct the foot drop (dragging of her foot) that she still retains from her past neuropathy. She wants to conquer this even faster. Anyone need a wheelchair, cane, and crutches?!
Thursday, July 17, 2008
(Dave) Karis is being hospitalized. Her platelets indicate blood density or likelihood of clotting. High is 400,000. The doctors were worried on Monday when it was 958,000. Today it’s above a million. She’s being admitted in order to deal with that and with the possibility of a blood clot (embolism) coming loose.
As regards her hip, Karis is better every day. She had her first session with a new physical therapist yesterday. He is the best she’s ever had. Praise God for that!
Monday, July 14, 2008
(Debbie) It's a beautiful summer evening and we just got back from an outing to a park. Part of the time Karis walked with her crutches and part of the time Val or I pushed her in the wheelchair. It was more fun than our outing earlier in the day, to Montefiore for clinic (we were there from 6:30 a.m. until almost 2:00 p.m.). We won't know for a couple of days the current status of the EBV, but the docs are worried about the possibility of blood clots because Karis's platelet level is very high. So they've added a second daily injection and another oral pill to her ever-increasing number of daily meds, and they want her up and active as much as possible. This would be easier if she weren't so tired. A few other issues were addressed at clinic as well and she's to go back to clinic on Thursday, with a visit to another doc and PT sessions in between. Dave gets back tomorrow from Brazil. If we don't update for awhile, please assume everything is OK. We're trying to make life happen that doesn't revolve around medical issues.
Saturday, July 12, 2008
(Debbie) They decided not to give Karis the problematic drug this morning. Instead, gave her an IV version of the one she's already taking, and will repeat tomorrow. Karis is fighting a bad cold — one more annoyance! But her surgery pain is better, and she's walking more easily with her crutches.
Friday, July 11, 2008
(Debbie) I spoke too soon yesterday about a quiet day. A physical therapist came for a workout, then several visitors, whom Karis enjoyed, but she's pretty tired today. We just received a phone call saying her EBV, rather than continuing to go down, has shot back up to 20,000. We had hoped to discontinue the drug. Instead they doubled the dose, and she has to go to the hospital tomorrow for an IV treatment which in the past has resulted in very painful side effects (these drugs are in the class of chemotherapy). So I guess it's too soon to stop praying! Thanks!
Thursday, July 10, 2008
(Debbie) I think we've turned a corner. Last night was Karis's best night since surgery. This morning she got out of bed by herself for the first time. We shared breakfast and devotions and now she's out again. Praise God, no clinics or doctors or home care nurses scheduled for today, so she can just rest.
Wednesday, July 9, 2008
(Debbie) It's been great to be home but it's been a bit challenging too, figuring out how to make Karis comfortable without the luxury of the fancy bed and nice recliner she had in the hospital. Her pain medicine was cut significantly when we came home, and pain kept her from sleeping last night. We spent this morning at Montefiore, where the transplant team addressed a number of issues including her pain coverage, and their way seems to be working better. We are encouraged. They pulled her PICC so we no longer have to worry about infection from that source.
Please continue to pray for protection from infection in her surgery site and from blood clots, for resolution of her anemia, lowering of her EBV count, for pain management, progress in PT, getting rid of 13 pounds of retained fluid in her body, and the ability to rest and sleep. (In the last month her EBV level has come down from 23,000 to 4,600, but she was told today that they want to see it close to 100 before she stops taking the drug, which has some unhappy side effects. We were told that EBV is the one single most dangerous bug for transplant patients.)
Each day should get better!
Tuesday, July 8, 2008
(Debbie) Karis is still in the hospital, but she expects to go home this morning. They wanted to make sure her hemoglobin level had improved sufficiently following her blood transfusion.
Monday, July 7, 2008 ~ 2
(Debbie) Karis has been pretty shaky today and it turns out that her hemoglobin is low and she'll need a blood transfusion before she can go home. We're also still trying to figure out insurance and home care details. They're still saying they're trying to get her out today, but it won't be until later, probably this evening.
Monday, July 7, 2008
(Debbie) Karis has been cleared for going home this afternoon!! Just need to work out the details of home care. She's learning to walk short distances on crutches. She'll be doing outpatient physical therapy right here at Shadyside Hospital, which is very convenient for us! Hallelujah!
Saturday, July 5, 2008
(Debbie) Karis is off walking down the hall with her physical therapist, moving more freely today than yesterday. This afternoon they'll take her down to the gym to practice getting in and out of a car and climbing two or three steps. Exciting! She continues making good progress in all areas, taking less pain medication now so she's not as dopey.
Friday, July 4, 2008
(Debbie) Happy 4th, everyone! Karis is doing well. She just walked about 50 yards down the hall with a walker and one therapist. This morning a drain was pulled out of her leg and they're going to pull the nerve block line today, since she's doing well with other pain medication. She's steadily becoming a free woman! She's sitting up in a recliner now, waiting for her brother and sister to wake up and come visit.
If all continues to go well, she'll go home from the hospital Monday or Tuesday. We've been told we need to get a bed for her at home first — she won't yet be allowed to do the bending that a mattress on the floor requires. If anyone in Pittsburgh has a bed you're not using that we could borrow for a few weeks, we would really appreciate it! Bed provided, PTL !
Thursday, July 3, 2008
(Dave) Ted and Claudia Limpic, OC collegues formerly in Brazil and now in Spain, came from Spain for Karis's graduation. I thought you might like to see their loving report of participating in that weekend with us.
PDF Limpic
Karis is doing wonderfully well after the surgery. A small fever came and went this morning. She has walked around her bed with a walker and the support of two people from physical therapy. The pain that got up to level nine this morning (on a scale of ten) is now down to five with good pain treatment. She's more asleep than awake cause of being dopey from the pain medications, but she's doing really well! They've removed three tubes or lines which gives her more freedom, including the push-botton for pain since it's been replaced by oral pain meds. Four tubes or lines to go!
Our son Dan arrives tonight for three days. YEA!
Thursday, July 3, 2008
(Debbie) When I left Karis last night she was still very sleepy and saying funny things, so I expect she had a quiet night. Dave stayed overnight with her and I'm heading over now. Within a couple of days they should be able to start pulling some of the drains and tubes hooked up to her now. Dan will be coming up from DC tonight.
Wednesday, July 2, 2008
(David) Karis came through the surgery with flying colors. She's resting well. No fever or complications thus far. She really looks good with no tubes coming out of her mouth, nose or neck! YEA!
Tuesday, July 1, 2008
(Debbie) Karis's surgery tomorrow is scheduled for 9:00 a.m. She needs to be at the hospital at 6:00 a.m. to receive IV antibiotics before the surgery. (The hospital is just a block away from our apartment!) I asked her what she would like prayer for in particular:
1. That she not wake up during the surgery (as happened during her transplant surgery). She has low blood pressure, so they can't give her deep anesthesia.
2. That no infection will enter her body. (The EBV and the UTI seem to be conquered, thank God.) 3. That she not have trouble with blood clots.
4. That God will give Dr. Crossett and his team wisdom and skill.
5. That she not have any complications and can be out of the hospital in 4-5 days.
The postponement to July 2 allowed Karis and Valerie the deep delight of attending the wedding of precious friends in St. Paul, MN last weekend. They got home yesterday evening. The July 2 date also allows Dave to be here for the surgery, before he travels Sunday to Manaus, in the Amazon region of Brazil, for a long-planned conference.
Thank you. A friend here has prayed that we would be "ridiculously confident" in God re. this surgery!
Tuesday, June 17, 2008
(Debbie) We just received a phone call saying Karis's surgery has been rescheduled for July 2nd. Two more weeks . . .
Monday, June 16, 2008 (evening)
(Debbie) We're home from the hospital, feeling rather deflated. (No pun intended, Karis! Karis had several liters of retained fluid pulled from her body during last night and today. :-)) She's to report in to clinic on Wed. and if they're satisfied with her progress, we'll be able to contact the orthopedist to see about re-scheduling her hip replacement. Certainly God is in control, and we do trust him for the next steps.
Monday, June 16, 2008
(Debbie) Today's surgery has been
cancelled — Karis has a urinary tract infection. It will be rescheduled once this is treated.
Saturday, June 14, 2008
(Debbie) Karis spent nine hours yesterday at the hospital doing pre-op testing, and the conclusion is that her Monday surgery is a go, 1:00 p.m. at Shadyside Hospital. She's still working on her thesis!
Friday, May 30, 2008
(Debbie) Karis was just informed that her hip replacement surgery has been scheduled for June 16. Please pray that the docs will help her manage her pain so that she'll be able to complete her remaining school projects before then! Thanks.
Wednesday, May 28, 2008
(Debbie) Thanks to friends who took pictures (principally my 11-year-old nephew Noah), we can share some of the fun of Karis's graduation weekend!
[click here to see photo page]
Thursday, May 22, 2008
(Debbie) We joyfully celebrated Karis's graduation from Notre Dame, with the lovely presence of friends and family members. We'll have a second celebration once Karis is able to finish her last assignments. ND graciously gave her an extension. She spent several days of her last week of the semester in the hospital but hopes to get back to work soon.
We moved Karis to Pittsburgh the night of May 18 (her graduation day), because docs here wanted to see her on Monday. This week has involved many hours of in clinics and hospitals. Bottom line: she'll probably be having her hip replacement surgery next week (or possibly the week after), and is also being treated for a couple of other things that have come up. Thanks for praying her through. We'll let you know when we can have that second graduation celebration!!
Sunday, May 18, 2008
Karis graduates from Notre Dame!
Wednesday, May 7, 2008
(Debbie) Monday evening a group of Karis's friends had a lovely surprise birthday party for her. We celebrate with joy 25 years of God's faithfulness to her and to our family.
As I write this, Karis is taking her second final exam. Still to go: a take-home final (translation of a chapter from English into Arabic), a 20-pager still left from last semester, and completion of her honors thesis. Please keep praying for good sleep that will allow her to focus!
God's faithfulness has been manifest through the provision of an apartment for us in Pittsburgh for the summer (thanks to MANY hours of work by our friend Marilyn!) and an orthopedic surgeon willing to work with Medicaid (feels like a major miracle). Karis will be moving to Pittsburgh May 20th and has drs. appointments the next two days. Praise God with us for his faithfulness!
Those of you who have been tracking with us for awhile will remember our little friend Ricardo. He is in ICU at Children's in Pittsburgh with a large tumor in his liver. Please pray for him and his mom, Eudiscélia. We'll be seeing them soon.
Monday, Apr 21, 2008
(Debbie) Karis continues to work hard on completing her academic work before graduation May 18th. Her honors thesis is particularly challenging. She wants to do something truly worthwhile, not just "get through," which leaves some of the rest of us just a little bit crazy! Prayer requests:
1. Sleep. Often Karis can't sleep because of pain in her hip (she feels like it collapsed more yesterday), but if she takes pain medicine the narcotics "mess with her head." Less potent meds don't ease the pain.
2. Focus. Sleep deprivation makes it hard to concentrate or work efficiently.
Plans: After graduation, we'll be helping Karis move back to Pittsburgh. Valerie and I will be living with Karis in Pittsburgh this summer, and Dave plans to be there too about half of the time. Karis will be examined by the orthopedist her transplant team recommends, and we hope he will set a hip replacement surgery date for late May or early June. While Karis recuperates from surgery, she plans to look for a job. She would love to find one with insurance that will take her on so that she can be freed from dependence on Medicaid. We hope that the hip replacement will restore her ability to walk freely and without pain! The surgery is high risk because of her low immunity (maintained to keep her from rejecting her transplanted organs), but Karis says she can't keep living as she is for much longer.
I'll be traveling to South Bend the end of this week. I hope to get a head start on packing while Karis finishes her papers and exams, to simplify the move to Pittsburgh.
Monday, Mar 24, 2008
(Debbie) I've asked my brother (who graciously manages this site) to remove the previous posting, at Karis's request. She needs to focus on her work, so although she really appreciates everyone's love and concern, she needs freedom from being in the "fish bowl" for the next few weeks. We'll let you know if something dramatic happens, but otherwise just keep praying that she'll be able to get her work done — and thanks for understanding! Happy Spring, whenever it reaches you!
Monday, Mar 10, 2008
(Debbie) Karis had some ups and downs during her spring break week but was able to complete the work for one of her classes from last semester. Praise God for that! One big paper to go, and this semester's work, including her honors thesis.
A friend, Francis, came over with his camera:
Album 166: Questioning Karis
Sunday, Mar 2, 2008
(Debbie) I have received many inquiries related to turning Worshiping God in the Desert into a book. That's not as easy to do as you might think! I have learned, as I've started collecting rejections from publishers, that a thousand manuscripts are turned down for each one that makes it into print. So I am trying, but I don't know whether it will ever be published in book form.
Along the way, I've done a fairly extensive revision of the chapters as they were originally posted. Since receiving my last rejection, I've decided to go ahead and post these changes and new chapters here on Karis's site. If there's a chance that they may encourage someone, I'd rather make them available this way than wait on what may be a vain hope for publication.
Many thanks to each of you who has encouraged me in regard to these memoirs!
Saturday, Mar 1, 2008
(Debbie) Karis woke up this morning saying "I feel so, so much better!" Hallelujah!! The pleurisy pain is gone, and her tummy feels normal again. She has the week of spring break ahead of her to work on catching up in school. A new month, a new beginning!
Friday, Feb 29, 2008
(Debbie) Karis seems to be doing better. She handled a "soft" supper without major crisis last night. She's just gone off to class and to make up one of her midterms and a quiz she missed. We're encouraged!
Thursday, Feb 28, 2008 ~ 2
(Debbie) The MRI showed that Karis's hip is already starting to collapse. She will definitely need hip replacement. Please pray that she can make it until after May graduation.
Our friend Larry in Pittsburgh, whom we have asked prayer for before as he awaits liver and kidney transplants, is once again fighting Hepatitis C with a powerful drug called Interferon. Until that virus is cleared, he can't have transplant. We would really appreciate your prayers for him and for his family.
Thursday, Feb 28, 2008
(Debbie) Karis tells me today that she's not better, but she's also not worse. It seems that the intense intestinal pain is an obstructive pattern. When she eats something, shortly thereafter she has serious pain that doesn't relieve until her bowel releases, sometimes 12 or
15 hours later. But each time the obstruction has resolved on its own, so she hasn't had to go back to the hospital. The pain medication has been really helpful, not only with tummy pain but also the pleurisy and her hip pain. I'm a bit concerned that she may get back into dehydration, but so far she seems to be OK.
The biopsy came back negative for rejection, which was not really a surprise (she didn't have the symptoms we've seen with rejection in the past), but it makes everyone feel better to know that. I haven't yet heard the results of the MRI of her hip.
Karis was going through one of those intense obstructive episodes during the time of her midterms yesterday, so she'll have to make those up as soon as she can, as well as keep working away at everything else she's behind in. We don't know what it will take for her intestine to start functioning properly again, so would appreciate prayer for that. Seems to me it needs to heal from the impact of the dehydration. We learned when Karis was an infant that dehydration is very hard on intestines, and can get into a vicious cycle that results in additional episodes of dehydration. That's what we're hoping to avoid.
Happy Leap Day, in case I don't write to you tomorrow!
Wednesday, Feb 27, 2008
(Debbie) Karis was released from the hospital last night, with her blood "numbers" back to normal. However, she is still experiencing intense pain in her upper abdomen from time to time, for which we as yet have no explanation, and around her lungs, which is probably pleurisy (inflammation of the lining of her lung cavity, left over from her cold). She was not able to study for her midterms last night until I ventured back out into the snow to fill a prescription for pain medication. Please pray with us for discernment of what's going on. Everything else seems to be fine.
During three days in the hospital, besides IVs for her dehydration, Karis had multiple blood and stool tests, a lung treatment, a chest x-ray, a CT scan of her abdomen, an MRI of her right hip (needed to help determine whether she needs hip replacement soon), and ileoscopy with biopsies to make sure she's not in rejection. She kept the transporters busy! We don't know the results of all the tests yet, but she'll see the doctor again tomorrow.
Monday, Feb 25, 2008
(Debbie) Karis was admitted to Memorial Hospital in South Bend Saturday night with dehydration, after a week of diarrhea of unknown cause which she wasn't able to keep up with orally. Sunday night she developed severe pain in her upper abdomen, so rather than going home from the hospital once the dehydration was resolved, she's still there. Tests are being run but the cause of the pain is not known yet. She missed a lot of classes last week because of being sick, and this week is midterms, so please pray that she'll be back on her feet soon. Thanks!
Saturday, Feb 2, 2008
(Debbie) Partly due to some confustion about which medications she is supposed to be taking, Karis has had a very tough week. She hasn't been able to sleep, and is very discouraged about her academic work. Please pray for her. Thank you.
Sunday, Jan 27, 2008
(Debbie) I just returned from a trip and learned the results of Karis's checkups in Pittsburgh and Cleveland last Thursday and Friday. She has been transferred from the Children's Hospital transplant team to the adult transplant team at Montefiore Hospital next door, so this was her first acquaintance with new doctors, nurses, etc. It was a very interesting time, with confirmation that her transplanted organs are doing great and new perspectives on ongoing challenges. Dr. Kareem thinks it IS possible to reconnect her tummy muscles! She had been told this would be impossible, so is very excited about this prospect, as well as some others that were discussed. She has embarked on a program of "sleep hygiene" that they expect will help her sleep better at night and thereby be able to enjoy more alertness and ability to concentrate during the day. This will help her tremendously in doing her schoolwork.
Her orthopedist in Cleveland said the x-rays and the increased level of pain Karis has experienced in her right hip both point to the need for a prosthesis. Her right hip has developed a second area of necrosis, right in the joint, and the doctor says her hip could fracture at any time. Good news is that her left hip has NOT gotten worse, so it looks like only the right side will require surgery. He concurred with the request of the transplant team to transfer her orthopedic care back to Pittsburgh so that everything can be managed in one place.
The present plan, then, is to project surgery in Pittsburgh for May (after her graduation from ND) or early June. I don't know whether they'll be able to do the muscle closure at the same time as the hip, or whether that will require a separate surgery. Karis is happy about the prospect of being relieved of the pain she lives with and the inconvenience of not being able to walk freely or lift weights.
Prayer requests:
1. That Karis's hip not fracture in the coming weeks, so that she can complete the semester and graduate in May.
2. That the sleep hygiene will work, giving Karis a better chance of success in a pretty overwhelming amount of academic work to accomplish (including completion of two courses from last semester).
3. That she'll stay well through the winter season of colds and flus.
Thank you!
Wednesday, Jan 9, 2008
(Debbie) All four of our kids came home to Brazil for Christmas, and we spent a week (Dec. 24-31) visiting two cities in northeast Brazil (Salvador and Natal), a longtime dream of Karis's. Here are a few pics that Valerie selected (then use your browser's Back Arrow to return here):
www.flickr.com/photos/22656665@N06/sets/72157603671909637/detail/
"You make me glad by your deeds, O Lord; I sing for joy at the works of your hands." (Ps 92:4)
The US airline lost pieces of Karis's (borrowed!) wheelchair, but our friends found one for us to borrow in Salvador and one to rent in Natal, and we're making do here in São Paulo. (Still trying to work things out with the airline.)
Since we've been back home, Karis has been working several hours each day to conquer her incompletes from last semester, as well as spending time with friends. Valerie has gone to Ribeirão Preto for three days to visit her good friends there, since she doesn't know when she'll next be able to come to Brazil. We've also watched some challenging films: The Constant Gardener, An Inconvenient Truth, Invisible Children . . .
Karis shared briefly at our church service Sunday night, a time of celebration of all that God has done for her, while recognizing some of the challenges she still faces on a daily basis. Jan. 10-11 marks two years since her 5-organ transplant! More about that in a day or two . . .
Dan returned Jan. 2nd to work in DC. Karis and Valerie return to ND Jan. 12th, Karis for her last semester of college! On the 12th also, Rachel leaves with a group of young people from our church who will join others from São Paulo and Ribeirão Preto for another Promifé outreach, in an interior town of the state of São Paulo. They will all appreciate your prayers.
We've been remembering what things were like for Karis the last time she was here at home in Brazil, May-June 2005. At that time,
* Karis had no intestine, so of course she couldn't eat, and was completely dependent on TPN (nutrition through her veins). We filled a good part of the dining room with her medical supplies. She was on about 15 medications, most of them IV, some through her G-tube.
* She had so little energy that she spent most of her month at home on our living room couch, where she sometimes felt good enough to visit with friends.
* She had two huge long tubes protruding from her tummy into large drainage bags, that went with her wherever she went.
* She had no control over her right foot, but could walk with a brace.
* She was on high doses of pain meds to cope with chronic pancreatitis. Her liver was going into failure (two months later she was told she would need liver transplant).
* She was still struggling to re-learn basic skills that she lost while in coma, like reading and writing.
* She refused to let her picture be taken because she hated the way she looked.
Now, though she has some daily challenges especially related to her hips, you can see from the pictures what a transformation there has been! Praise God with us!
Saturday, Dec 15, 2007
(Debbie) Karis requests that we post the following:
Today we received a special request to make a birthday wish turned Christmas wish come true for a little girl in Alabama . . . her name is Dasia and she is a patient at St Jude's Children's Research Hospital. Dasia is 9 years old and is doing battle with Diffuse Pontine Glioma (tumor in the brainstem).
Last March, when Dasia turned 8, her wish was to receive a birthday card from every state in the United States . . . she only received three . . . but now, the word is out . . . Please join us and help make this Christmas very special for this brave little girl and her family . . . take time and send Dasia a Christmas card today.
Her home address is:
Dasia Atkinson
1808 Oakado Dr East
Mobile, AL 36609
Friday, Dec 7, 2007
(Debbie) Karis says her tummy is better but her hips are worse. She has negotiated an extension for one of her classes (she'll complete it over Christmas vacation), so that she can concentrate on finishing the others.
Saturday, Dec 1, 2007 ~ Happy Birthday, Jan!
(Debbie) As we begin Advent we praise God for his Presence in our lives. Karis just turned in a long-overdue history take-home exam. She's exhausted and overwhelmed by all that she has to do to finish the semester. Please help us pray Is. 40:29 [click] for her through these last three weeks, especially that she doesn't get sick. It's been five years since we were all home in Brazil for Christmas—we're hoping & looking forward to doing it again!
Sunday, Nov 25, 2007
(Debbie) Karis is doing better since she had a barium swallow (an x-ray exam of barium traveling through the intestine). She thinks the exam itself, with its required fasting and cleansing of the intestine, helped relieve accumulation in the trapped loop of intestine, which has been causing obstruction. Otherwise, the intestine is healthy, a wonderful thing to know! She's working hard in school, with lots to do before Christmas vacation. We're praying that she'll be well enough to come to Brazil for Christmas!
Thusday, Nov 1, 2007
(Debbie) November signals for me a renewed opportunity to give thanks to God for his grace in giving Karis's life back to us three years ago, when severe rejection and double pneumonia almost took her life following her first transplant. We are deepy grateful to all who joined us in that battle (and all of the ensuing
ones!) through your love and prayers.
A couple of weeks ago, Karis spent a day in the hospital in South Bend with a bowel obstruction, which though distressing, eventually resolved on its own without the need for surgical intervention. Since then, Karis has continued to have intestinal distress. Some tests will be done once they are approved for coverage by insurance. The suspicion is that loops of bowel become entangled in adhesions, resulting in obstructive symptoms. Additionally, Karis is battling a nasty cold, and feels exhausted. Once again, we would appreciate your prayers as she tries to fulfill her responsibilities at ND while not feeling well. Thanks so much.
Saturday,
September 8, 2007
(Debbie) Karis called yesterday. Other than a sore throat (pray that it doesn't get worse!), she's doing well, very busy already with a very challenging course schedule that includes a course in the ND law school on defense of human rights. She finally learned results of her hip x-rays: her right is apparently just a little worse, but not enough to alter the course of treatment at this point. The orthopedist wants new x-rays, and maybe some other exams, six months from now. Meanwhile Karis is continuing with non-weightbearing exercise and riding a scooter all over campus. It is such a blessing that ND provides that for her (it's blue this semester :-) ). She's very happy that a friend has moved in with her, so she doesn't have to wake up alone or come home to an empty apartment.
Please pray for Luke Murray's family: a tragic car accident has taken the lives of 10 and 13 yr old cousins. Thanks.
Tuesday,
August 14, 2007
(Debbie) Karis finished her Arabic immersion last Friday with a one-hour oral presentation in Arabic, along with papers & exams. She flew to Pittsburgh on Saturday and other than visiting Ascension Sunday morning has mostly been sleeping (& trying to remember how to speak English :-) ). It's lovely to be able to talk with her again! She's exhausted but very happy with the successful completion of her Arabic course.
During the next few days in Pittsburgh she needs to work out a number of things regarding insurance for her next school year, a check-up with the transplant team, etc. She hopes to make a trip to DC to visit her brother next weekend, then back to South Bend the following weekend. Classes start again at ND on Aug. 28th, Karis's last year! If all goes continues to go well, she expects to graduate from ND next May.
One answer to prayer is that blood work done in LaCrosse revealed the culprit of her allergic reactions: egg whites! She must have inherited this from her donor, because it was never a problem before this transplant. She should now be able to avoid having more allergic incidents.
Karis is scheduled for a check-up with the orthopedist in Cleveland next Monday (the 20th). She's optimistic that he will say "stay the course" with conservative therapy, rather than requiring surgery.
Monday,
July 16, 2007
(Debbie) Lukey made it through the night, but they had to increase his ventilator settings to help him breathe. For a full report, go to www.CarePages.com. Luke's care page is called lukemurray. Thanks for your prayers for this precious little boy.
Sunday,
July 15, 2007
(Debbie) Just received this note re. Larry:
"Spoke to Maliya yesterday. Larry has been sent home . . . His numbers suggest the Enterfurion is NOT effectively combating the Hep C virus . . . The output of his kidney is fairly minimal at this time and Maliya expects to begin home dialisis this week. Doctors’ prognosis for his recovery is sadly, very diminished. . . He, Maliya and the kids are at a very low point emotionally and spiritually. Larry clearly needs a Miracle. So please pray."
And this about our little six-year-old buddy Luke, who is in the ICU at Children's with a blood infection and fever over 105:
"Things got really bad for Luke today. I just left the hospital and Luke is now on a ventilator to help him breathe. He does have an infection but forgot the type it is but it is coming from his broviac catheter. He has many other problems tonight. Low blood presures, high sugar readings and a very very low white blood count."
We've known Luke and his family since he was a baby. Please join us in praying for them. Thanks so much.
No news from Karis, so that's good news!
Friday,
July 6, 2007
(Debbie) I had a big surprise when I downloaded e-mails today: an e-mail from Karis! She said they allowed her to write to let us know that she's doing well. Praise God! Three weeks done, five to go. Here's what she says, "I am learning so much every day I can b
