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Email Carissa in care of Sharon at Sharon1992@aol.com. No new update indicates that Carissa is doing well. National Transplant Assistance Fund for Carissa Saturday, April 29, 2006 10:00 p.m. Surprises never cease! Carissa spiked a fever again this morning, but the doctors are considering releasing her from the hospital on Monday. They believe the fevers are being caused by CamPath, a drug given prior to transplant that wipes out the immune system. They have released patients with fevers in the past, and the fevers have gone away in time. Carissa will still be watched closely. The post transplant schedule requires us to be at 7 West by 6:30 a.m. every morning for blood work and twice a week for biopsies. Carissa's hoping that we won't be required to be there every morning since she has been in the hospital seven weeks. We'll see... Karis and Debbie came by to tell "Granny" bye. We enjoyed being with them and learning about their many tentative plans (pending approval) to get on with life. It's so exciting! Friday, April 28, 2006 10:00 p.m. The PICC line was changed this afternoon and Carissa's temperature has been normal ever since. We pray that the new line wasn't infected as it was placed. By the way, a central line (PICC, Hohn, etc.) is still vital for administering medicine, but will probably be removed before Carissa leaves the hospital. Carissa's liver counts are up again. Dr. Kareem is concerned because they continue to fluctuate dramatically. He doesn't have an explanation for the symptoms yet. So keep praying! Mary Ruth, Carissa's grandmother, will be flying home on Sunday morning. Tears of thanksgiving filled her eyes tonight as we walked out of Carissa's room, and she mentioned how thankful she is to be here and see Carissa look so healthy. Carissa has a long ways to go, but she's well on her way. We would appreciate prayer for a young lady (in her twenties) named Gretchen who is waiting at the Residence Inn for a multivisceral transplant. Seeing Gretchen causes our minds to flood with pre-transplant memories. She needs new organs soon. Thursday, April 27, 2006 10:00 p.m. Carissa spiked a fever overnight and again this afternoon. They took blood cultures from each of the four ports on her PICC line today in hopes of finding out the cause. All of the previous blood cultures are still negative. Dr. Bond is pleased with Carissa's progress "on paper." Her blood work is improving, but the fevers are a puzzle. He may decide to change her PICC line over a wire tomorrow even if it has only been a week since it was placed. He can't have a new one placed elsewhere because it the only vein in her upper torso that isn't filled with scar tissue. Although blood work is improving, Carissa continues to need potassium, magnesium, and phosphorous by IV. She was given IV potassium yesterday and, in spite of it, her level was 2.2 this morning. Carissa has had cardiac arrests at that level in the past. She was given three bags of potassium this afternoon, and her level only rose to 2.6, so she is being given more tonight. It is common for minerals to be needed the first few weeks after transplant by IV, but Carissa has a history of problems with absorbing potassium that we pray won't be a continuing problem. To summarize, please pray:
Karis is out of Children's Hospital! She's been admitted to the rehab center but, hopefully, not for long. Wednesday, April 26, 2006 11:00 p.m. (Sharon) The small bowel biopsy showed no signs of rejection. No rejection is always a praise! Carissa spiked another fever about 4 a.m. and then again this evening. They are continuing to give her Cipro and Vanco by IV, but decided not to replace the PICC line after all because it was just placed a week ago. A CT scan was taken of her abdomen this evening, but we don't know the results yet. The diarrhea associated with the j-tube feedings has started again. Dr. Bond adjusted Carissa's feedings so that she has j-tube feedings for sixteen hours overnight, and then discontinues the feedings for eight hours during the day. They will keep record of her caloric intake by mouth and add or diminish j-tube feedings accordingly. Karis may be released from Children's tomorrow! We are soooo excited for her! It has been fifteen weeks since her transplant. Some of you have asked about our move to the Residence Inn, so I will clarify for you. We were able to move because of help received through the National Transplant Assistance Fund (NTAF). They were able to negotiate a rate for us that is $30 per night above what we were paying at the Family House. Even at the reduced rate, the move would not have been possible if it weren't for gifts that have been made through NTAF. We deeply appreciate those gifts! A few months ago we investigated the possibilities of moving to an apartment. There are apartments available on a six month lease and we could have rented furniture. There were some challenges such as distance, tunnels and bridges, neighborhoods, etc., that could have been managed. But we would loose the safety of living where personnel are well informed regarding transplants and transplant patients, in case of an emergency. Going to the grocery store or the post office would no longer feel safe, if Carissa wasn't able to go with me. At the Residence Inn, we have that safety as well as the privilege of an efficiency apartment with a kitchen. We will relish this gift as long as the Lord provides and funds are available. (Carissa is looking forward to dangling her feet in the Jacuzzi!) Tuesday, April 25, 2006 10:00 p.m. Carissa's fever spiked to 104.8 tonight in spite of around the clock doses of Roxicet and Tylenol, and multiple doses of antibiotics. Four nurses on 12 North responded almost immediately with a cooling blanket, ice packs, and more Tylenol. (What a great bunch of nurses!) Dr. Kareem came by a while later and said that they will be changing her PICC line again tomorrow (was changed over a wire one week ago), and they will also do a biopsy to check for rejection. Carissa and I (Sharon) highly suspect that the fever is caused by a line infection because the symptoms are so familiar. But we also understand that we have yet to learn how her body will react to rejection. Dr. Kareem stopped the TPN feedings tonight and increased the j-tube feedings to 50 cc. per hour. Carissa's new organs are tolerating the increased rate and the food she is eating much better, so far. She is still needs Zofran for nausea, at times, but her tummy isn't distended like before. A member of the IV team took more blood cultures tonight. When he walked into the room, he commented, "This room is blessed! This is the most blessed room in this hospital. I had to tell my wife about this room last night. There's a lot of love and prayer in this room!" Your love and prayers surround Carissa through your cards. Thank you for your love for Carissa and your faithful testimony to others. Monday, April 24, 2006 9:00 p.m. Blood culture results have not revealed an infection so far. However, Carissa's fever spiked up to 101.7 within minutes this evening, which is typical with line infections. Carissa is able to eat once again, much to her joy! She wasn't excited about the lunch menu today, so she walked to the Coffee Shop on her own and ordered a cheese-steak sub. She only ate a few bites, but enjoyed a few more bites for dinner. She also enjoyed a blueberry cheesecake milkshake tonight. She is trying very hard to control the portion sizes and says her system is handling food better. So far so good with the j-tube feedings! Dr. Kareem hopes they will be able to discontinue TPN within the next couple of days. Karis came by to visit again tonight. She looks beautiful! She walked all the way from and back to Children's Hospital. She may be released to a rehabilitation center on Thursday, but they may not need to keep her long. Sunday, April 23, 2006 9:00 p.m. Celeste was a gift from the Lord this weekend. She helped us to get settled and was also able to spend time with Carissa while we were recovering from the flu. As Granny and I struggled with nausea, vomiting, diarrhea, and weakness, we were reminded that Carissa has faced those symptoms almost daily for twelve years. Amazing how the perspective changes! Carissa is on almost constant IV antibiotics. In spite of it, she continues to run a fever tonight. They have taken blood cultures again today. Everything about our bodies is so intricately interrelated. The lasix to prevent fluid buildup in Carissa's lung depleted her potassium, so she was given three bags of IV potassium today. Dr. Kareem started j-tube feedings again at 25 cc. per hour. We pray the diarrhea won't come back! Saturday, April 22, 2006 11:30 p.m. (Celeste) I'm here visiting just for the weekend and it seems to be a good time to have come to visit. While Mom was feeling considerably better yesterday (she and Granny are recovering from the flu that attacked the Family House before they moved out), today was a rougher day and she's back to feeling quite weak. I'm sure the move yesterday took a good bit out of her. So I'm glad I could be here to help out while she's not feeling very well. Granny is still getting her strength back as well. I enjoyed helping Mom and Granny unpack some of the things that got moved from the Family House to their new "home" at the Residence Inn. This is a really nice new temporary home for Mom and Carissa. Having their own small private kitchen will be one of the biggest benefits, not to mention the laundry being right across the hall rather than down in the basement! There are many things that they can enjoy here. The view out the windows from this room is much more peaceful than the view from their old room at the Family House... while we were told they had one of the best views available from the house before... it doesn't compare to the small garden path and quiet hillside that can been seen from the windows here. I know that Mom will also greatly appreciate the convenience of the parking garage. At the Family House, there was a very small parking lot for all of the guests which often forced Mom to have to fight for a parking place on the street. What a blessing to pull into a parking garage and have many choices on where to park! The move the Residence Inn really feels like a milestone in the journey towards finishing this long stay in Pittsburgh. While there's still a lot that needs to happen before Carissa will be officially released to move back to Harrisburg, this move is an additional reminder that we're now on "the other side" of transplant and that her wait now will have a more foreseeable end. Praise the Lord! I spent the evening with Carissa at the hospital. Some of her swelling has begun to subside. She's still a bit puffy, but even in the time I was with her this evening I saw a dramatic reduction in the swelling. Since she has so much fluid in her body right now, the nurses have been monitoring her lungs carefully. This afternoon her pulse-ox dropped (measure of oxygen in her blood) and the nurse observed some rattling in Carissa's lung. They immediately put her on oxygen and started diuretics to get rid of the excess fluid. That seems to be working well so far. We enjoyed a brief visit from Karis and Debbie later this evening as well. Karis, while she's still struggling to gain control of numerous annoying issues in her recovery, looked considerably better to me than the last time I saw her. She walked with Debbie all the way from Children's Hospital without the help of a wheelchair! Even at a fairly brisk pace, it's a solid 10-15 minute walk. It was a nice surprise to get a chance to visit with them for a few minutes. Carissa began to spike a fever just before I left the hospital. It's likely that she's having another reaction to one of her medications, but with all of the medications she's on for the pancreatitis, it's hard to say which one. For that matter, it's truly hard to say if it's a reaction to something or a possible infection. It'll be easier to rule out an infection based on how quickly they can get the fever under control tonight. Please continue to pray for Carissa's pancreatitis to clear up quickly. One of the nurses told us today that pancreatitis is considered one of the top 10 most painful medical conditions. So, I'm sure Carissa would appreciate your prayers for this to clear up quickly. Also, I wanted to ask again for people to continue praying for our donor family. We still haven't learned anything about them. On Monday it will have been 6 weeks since Carissa's transplant. While during this Easter season that has just passed we have celebrated the new life that we have in Christ Jesus and the new chance at life that the Lord has given to Carissa, I'm reminded that someone out there just spent their first Easter without their loved one. While for us it seems that so much has happened in these 6 weeks, I'm sure the pain of their loss is still very fresh. Our hope and prayer is that if they do not know the Lord that He will draw them to Himself and that He will comfort them. Friday, April 21, 2006 - 10:30 p.m. Carissa looks like she has the mumps, but says it is nothing compared to how swollen she was yesterday. Dr. Kareem confirmed that the swelling is due to pancreatitis. It is difficult to treat pancreatitis, so they typically let it run it's course. However, because she is so immunosuppressed, they are pumping her full of antibiotics. Carissa's hematocrit count continues to drop in spite of blood transfusions. She had a CT scan of her abdomen tonight. They are looking for an abdominal bleed. We are familiar with the post-transplant roller coasters, though we dared to dream that they might not happen. They are happening, but we know you are still with us praying. We have moved! Because Carissa's so immunosuppressed, we felt it would be wise for us to move to a suite with a selfcontained kitchen before she is released from the hospital. We will sorely miss our Family House friends, but feel that there will be less risk of infection for Carissa. Our new address is: Residence Inn Room # 712 If you have sent something to Family House recently, there is no need for concern. We will stop by to check for mail for the next week or two, and plan to visit thereafter. The friendships and "family" we have gained over the past sixteen and a half months will always be treasured. Thursday, April 20, 2006 - 8:30 p.m. Carissa is still feeling tough today. The pain is a little better, but her glands have swollen, and her neck and face are swollen. The doctors have started her on several new antibiotics and are pumping her full of fluids. The treatment doesn't sound like pancreatitis, so there may be something else going on, as well. Sharon and Mary Ruth (Wayne's mom) have been fighting the flu. It has spread through the Family House the last couple of weeks. Mary Ruth is doing well now, and Sharon hopes to be better by tomorrow. Wednesday, April 19, 2006 - 8:30 p.m. Carissa has pancreatitis. We were told that it was a possible side effect of the ERCP test she had yesterday. She is feeling tough tonight. Thanks for praying. Tuesday, April 18, 2006 - 11:30 p.m. Dr. Kareem is back in town, and it was evident by the hustle and bustle on the twelfth floor. He looked over Carissa's chart carefully and made a number of changes. Carissa is back on TPN (IV feedings), which is wise in our opinion. She doesn't have any weight to spare and it will take time for her digestive track to work well enough for her to gain weight. Several medicines were dropped, some of which could have contributed to the loss of white blood cells. Carissa underwent an endoscopy today to open the valve in a bile duct. She is scheduled for a liver biopsy tomorrow. Dr. Kareem is making a serious effort to get on top of Carissa's high liver counts. Reactions, reactions, reactions... Carissa had 200 milligrams (four doses of fifty each) of IV Benadryl to prevent or treat reactions to Amphoterisin and platelets by 1:30 this afternoon. But at 7:30 p.m., she was still flushed, had a rash, tightness in her chest, and a headache. She was scheduled to take Benadryl again before a dose of Cipro tonight. Her body's tolerance of Benadryl greatly diminishes it's effectiveness. Carissa will be given platelets again at 5:00 a.m. tomorrow because of the liver biopsy scheduled a couple of hours later, so more of the same tomorrow. The reactions take a lot out of her and they have have happened several times a day for a week or more. Carissa will appreciate your prayers regarding this situation. Monday, April 17, 2006 - 10:30 p.m. Carissa's liver counts are still extremely high. Tomorrow afternoon she will undergo an endoscopy to open a valve that drains bile from her liver and pancreas into her intestines. The nerves in the bile duct were damaged during transplant, so the valve isn't opening and closing properly. They will either place a stint to hold the valve open or will make a larger opening so bile can empty freely. Dr. Costa mentioned that Carissa's anatomy is complicated. There are couple of major risks, but he assured Carissa that they will do everything possible to prevent a problem from occurring. He says the surgeon is one of the best in the country. We will appreciate your prayers. Carissa felt better this afternoon and is trying to eat again. She is discovering that it is best to eat small portions slowly, allowing her body to warn her if diarrhea is going to be a problem. She mastered the art of eating while emptying everything through a g-tube. She will master the art of eating with new organs, in time. Sunday, April 16, 2006 - 11:00 p.m. Another rather rough day! Carissa feels stuffed to the gills and nauseated, so eating isn't a pleasure right now. It may take a few days for the j-tube formula to clear from her intestines and give her relief. On the good side, Carissa's liver numbers were better today. Volunteers treated Family House McKee guests to a delicious dinner tonight of roasted chicken, meatloaf, macaroni and cheese, mixed vegetables, potato salad, French bread, cookies, cake, and ice cream. What a treat! Please pray for Karis. She will be back on TPN for the next 7-10 days and won't be able to eat. The doctors are attempting to eliminate the build up of fatty fluids in her lung. She may have to have surgery again. Here's a link for more details: http://www.aup.org/Karis/latest_update.htm Saturday, April 15, 2006 - 10:00 p.m. All of Carissa's nutrition is by mouth as of noon today because her liver counts shot up dramatically. Dr. Costa thinks j-tube feedings (and possibly the anti-diarrhea medicine) may be causing the elevated liver counts. Dr. Costa said that some patients do best if they eat a soft, low fat diet and receive no other nutrition. Carissa felt a little better this evening, so maybe it will work. What an awesome answer to prayer it would be! Carissa is celebrating Easter by making origami animals for her nieces and nephews. They will get them a little late since we will have to mail them, but that's okay. They'll enjoy them when they arrive. We are also looking forward to reading "Suddenly One Morning" by Chuck Swindoll. We are so thankful this Easter for the "gift of life" that Carissa was recently given. It gives new meaning to the "gift of eternal life" that Jesus provided for each of us through His death on the cross. Friday, April 14, 2006 - 9:00 p.m. Carissa's no longer neutropenic (no more masks!). Her white blood cell count was up to 6.0, so she didn't need a transfusion after all. We pray that it will stabilize in the high normal range. We ventured off of the twelfth floor today. Carissa suggested that we go to the gift shop on the seventh floor to see what snacks might be available. We enjoyed looking around at other things in the shop, as well, and even went into the Coffee Shop next door to pick up a menu for next week. Carissa wanted to know the options in case the patient's menu grows old. She walked slowly and was quite tired by the time we got back in her room, but it was exciting to see her motivated and able to get around. Carissa's still battling diarrhea, but it was slightly better today. Maybe the new medicine will kick in better by tomorrow. Dr. Costa ordered that Carissa's central line be replaced by a PICC line on Monday. The doctors prefer to remove all intravenous lines from post-transplant patients prior to release from the hospital, so it probably indicates that Carissa will be there several more days. Dr. Costa is considering sending her to inpatient rehab towards the end of next week. Carissa realizes her need for rehab and is hoping it happen. Wayne is on his way to the Philippines for two weeks. He would appreciate our prayers as he travels and teaches. Thursday, April 13, 2006 - 8:00 p.m. A month ago today! So much has happened and we have so much for which to be thankful! White blood cell count is up to 3.6 today! Whoopee! That is low normal, but it is encouraging. Dr. Costa plans to give her another transfusion tomorrow (today's didn't happen). Maybe it will boost her white blood cells into the high normal range and stay there. Carissa had a rather rough day with nausea and diarrhea. They plan to try a new medicine that will relieve pain as well as control diarrhea. Carissa hopes it works! Carissa also she reacted to IV magnesium again today. They had given her a dose of Benadryl as a pre-medication, but the effectiveness wore off before the dose of magnesium finished infusing. Thankfully Dr. Costa was on the floor and he ordered Benadryl immediately. It took her an hour or longer to get over the side effects. When nurses dare to tell who's their favorite patient, Carissa gets several votes. She's quiet, patient, and understanding which isn't typical. It's easy to be that way with the great nurses on the Twelve North wing. Wednesday, April 12, 2006 - 10:00 p.m. Carissa is off of all IV feedings and fluids other than two or three IV medications given throughout the day. She is able to handle fluids by mouth without a problem, but is struggling with nausea and diarrhea after eating. She is making an effort to eat anyway, but it is discouraging, and the diarrhea leaves her exhausted. Carissa's white blood cell count was up today to 2.6 (had been 1.6; 3.6+ is normal). Costa has scheduled another white blood cell transfusion for tomorrow. Wayne took his mom (Mary Ruth) to visit the rest of our family this week. She enjoyed seeing Celeste and John, and Faith, Ben, and the kids. She enjoyed visiting Faith and Ben's new home, and sitting on their porch to watch the kids ride their bikes. Wayne made a quick trip back to Pittsburgh today to see Carissa before he leaves for the Philippines on Friday. Sharon is happy to have Mary Ruth back in Pittsburgh. She has been a wonderful help. Tuesday, April 11, 2006 - 10:00 p.m. Carissa felt better today. Her fever was gone and she is no longer achy all over. Her white blood cell count went up slightly (from 1.6 to 1.7) with the help of Neupogen. She had a white blood cell transfusion this afternoon, so hopefully it will be quite a bit higher tomorrow. Fellow transplant patients assure us that the battle for white blood cells is a common problem right after transplant. It was so beautiful in Pittsburgh today! I (Sharon) longed to run away from the hospital with Carissa, but it isn't wise until her resistance is higher. At least Carissa was up to walking the halls again... Doctors and nurses comment on the many cards hanging in Carissa's hospital room, as well as flowers and other Easter season gifts. They know she is well loved. Monday, April 10, 2006 - 10:00 p.m. Carissa is becoming more confident about testing her new organs. She ate pizza and Jell-O for dinner and it ran through her like a freight train, but she wasn't nauseated afterwards. A little later, she felt hungry again. (Discontinuing TPN yesterday probably contributed to her hunger.) She was nibbling on a ham sandwich (with two packets of mustard on it) when I left her this evening. Carissa continues to be neutropenic. They normally take two biopsies of the small bowel per week for several weeks after transplant, but haven't been able to take one for over a week because it could expose her to infection in the process. White blood cells are difficult to acquire for a transfusion. They only last 76 hours and the doctors want the donor's cells to match Carissa's cells on six out of six points. Those donated yesterday only matched four points, so they were rejected, and those donated today weren't a match either. The fever continues to fluctuate between ninety-nine and one hundred and one degrees. They are still not sure what is causing it, but don't seem overly concerned. One of Carissa's lungs is partially collapsed and there is some fluid build up but, thankfully, there is no sign of pneumonia, so far. She feels wiped out, but needs to walk to prevent it. Sunday, April 9, 2006 - 10:00 p.m. No more TPN! Dr. Bond discontinued Carissa's TPN (nutrition given through a central line) today. Yippee! It's a step closer to getting rid of Carissa's central line, her sole source of nutrition since December 2004 and a major source of line infections (sepsis) off and on throughout Carissa's twelve years of fighting for her life. Carissa will be given fluids through her central line for the next few days to prevent dehydration. Once Carissa is able to handle more food and fluids by mouth, IV fluids will be discontinued and the central line will be removed. Please pray that Carissa's new organs will begin to digest food correctly and that the diarrhea will stop. Right now her body is getting rid of anything taken by mouth within five minutes or less. Carissa continues to eat, but the after effects are not fun. Thankfully, Carissa is receiving 50 cc. per hour through her j-tube now and her new organs are handling those feedings without a problem. Dr. Bond also discontinued Vancomycin. Please pray the doctors will find the source, if there is something other than CamPath causing her fever. Carissa's white blood cell count continues to be very low in spite of the two transfusions that have been given. Dr. Bond has decided to give Carissa five white blood cell transfusions within the next five days, beginning tomorrow. Thank you for continually holding us up before the Lord. We are so blessed! Saturday, April 8, 2006 - 10:00 p.m. Carissa's fever spiked last night, so she was taken for a CT scan about midnight. They had been watching fluid buildup in her lungs, but were not concerned after viewing the CT scan. Carissa was given a white blood cell transfusion this evening. She is still neutropenic and will continue to receive doses of Neupogen until her white blood cells have multiplied adequately. Carissa slept most of the day, but felt better tonight. Her tummy is beginning to feel better. Though she is still cautious about how much she eats and food runs right through her, she isn't quite as nauseated, and doses of Imodium and the j-tube formula with fiber seem to be helping. The rate for j-tube feedings has been increased to 40 cc. per hour. It was humorous to watch Carissa at dinner tonight. She had ordered stuffed shells, but was given baked chicken. She tore the chicken breast into pieces until the meat was totally picked off of the bone. She only ate a few small pieces, but pulling the meat off of the bone gave her pleasure and she enjoyed licking her fingers. She loves to eat and will relish the moment she can eat it all. Friday, April 7, 2006 - 10:00 p.m. Carissa had a blood transfusion today. She is tentatively scheduled for a white blood cell transfusion tomorrow (depending on bloodwork results). Carissa is still running a fever, but it is staying below 102°. There is a possibility that it is a reaction to the CamPath given prior to her transplant. However, she is achy all over which is a typical symptom of a central (IV feeding) line infection. She is being given Vancomycin by IV just in case a bacteria is the cause. Carissa ate a few bites of chicken noodle soup, Jell-O, and baked fish, but they all ran right through her. She has nibbled on a few chips and, for some reason, they don't seem to run through her as quickly. She is enjoying sipping on apple juice. The rate for j-tube feedings was bumped up to 30 cc. per hour. She is very nauseated, but isn't as bloated as before. Thursday, April 6, 2006 8:30 p.m. Dr. Bond has ordered a white blood cell transfusion for tomorrow. Carissa's count is down to 1.2 again, and her red blood cells and hematocrit are also low. That probably explains why she feels like a truck hit her today. The balancing of white and red blood cells and hematocrit is a common post-transplant issue. The doctors keep a close eye on it. Carissa ate two or three bites of each of the foods she was given today: cheese pizza, angel food cake, macaroni and cheese, and ice cream. Unfortunately, they all ran right through her. Hopefully the changes in medicines made yesterday will help eventually. In the meantime, she plans to avoid dairy products to see if that makes a difference. Wednesday, April 5, 2006 9:30 p.m. Dr. Kareem came to Carissa's room this evening while I (Sharon) was there. He is very pleased with Carissa's progress. Her incision is clean and well on its way to healing. He decided that it was time to pull out her two remaining JP drains, the ones that showed evidence of pancreatitis last week. Drainage has looked normal the last few days. He is adjusting some of the medicines and the formula for j-tube feedings that should help control the remaining flu-like symptoms. Dr. Kareem asked that I take Carissa food, anything she wants as long as it is low fat. Carissa is cautious, wanting to be sure she can handle it. (She had been allowed to eat a little ice cream today and it ran right through her.) Dr. Kareem emphasized that her old organs are gone. The organs that she now has are totally new and won't behave the way the old ones did. She doesn't need to fear eating. Carissa was very nauseated today (j-tube feedings increased to 15 cc. per hour) which was discouraging to her. However, Maureen, the social worker, mentioned that some people do better on food and that if Carissa can eat enough to maintain her weight, the tube feedings can be discontinued. Talk about motivation!! Oh, to be rid of all feeding tubes! It will be a miracle. Carissa's face began to brighten with expectancy as we discussed what we had just heard. Training her organs to function will be a challenge. There will be a lot of uncomfortable moments. But she longs to be home so badly that she is pushing herself to walk and will push herself to eat. Tuesday, April 4, 2006 10:00 p.m. Carissa's dose of Prograf (antirejection medicine) was increased today. She continues to have flu-like symptoms, though she felt a little better today and her fever is down. Carissa ate her first post-transplant meal tonight. It was the first meal to not drain from a G-tube (from her stomach) or NG-tube (from stomach through nasal passage) since May 2004. She is limited to a clear liquid diet, so supper consisted of chicken broth, Jell-O, and cranberry juice. She ate a little of each, but didn't clear her tray (caution is wise). She had a more nausea and pain after eating, but it is to be expected until her stomach begins to function. J-tube feedings began again tonight at a rate of 5 cc. per hour. She was told to notify the nurse if nausea becomes problem. They will stop and start the feedings as needed, and will increase the rate very slowly. Monday, April 3, 2006 10:00 p.m. Carissa had a fever again today, as well as other flu like symptoms. For transplant patients, the symptoms could be caused by rejection rather than the flu. She is scheduled for a biopsy tomorrow morning. So far, the biopsies (taken routinely twice a week) have not shown signs of rejection. Dr. Kareem called Carissa today and asked if she missed him. Carissa said yes (he's been busy with transplants and other doctors have made hospital rounds). He asked if she wanted him to see her and Carissa said yes. He said, "I love you," and she said, "Same here." Does that sound like a surgeon/patient verbal exchange? Dr. Kareem has a big heart and a brilliant mind. Carissa knows that if there is anything going wrong, Dr. Kareem will catch it. Please continue to pray. Sunday, April 2, 2006 9:30 p.m. (Sharon) I was overwhelmed today by the wonder of what God has done for Carissa in the past three weeks. I have been cautiously elated from day to day, knowing that at any moment a downward swing could put Carissa back in the ICU. But it hasn't happened. I praise the Lord, knowing that it is a miracle. Dr. Costa told Carissa that her new organs are perfect for her. He said that she will never reject them. His perspective gives us great hope. If she never rejects them, it will be a miracle, and we will praise the Lord. We will also thank Carissa's donor family for their gift of life. Prayer highlights:
It was wonderful to see Karis, Debbie, and their friend, Cole, this evening. Karis hopes to be released from the hospital before long. Her transplant was January 10th. Natalie's body seems to be responding to the CamPath. She appreciates our prayers. Saturday, April 1, 2006 9:00 p.m. Carissa's white blood cell count was up today, but not totally where it needs to be. They are giving her doses of Neupogen after pre-medicating with Benadryl. Carissa has never reacted to Neupogen in the past, but they want to keep it that way. Transplant patient's new stomachs and small bowels are slow to "wake up." The doctors work on stimulating the small bowel first through j-tube feedings and was Carissa getting 20 cc. per hour yesterday. They had to stop the feeding today because her belly was distended (bloated) and she was nauseated. They drained some of the fluid through her j-tube to relieve the symptoms. Starting and stopping the formula to make the intake bearable will be a way of life for a while. Carissa was in more pain today because of her belly being distended. She did walk down the hall once to visit Pam, the first small bowel transplant patient we met when we arrived in Pittsburgh in December 2004. We would appreciate prayer for our friend Natalie who received a pancreas several months ago. She is going through severe rejection and her body hasn't responded to the medications that have been given. As a last resort, they gave her CamPath which is a drug that wipes out the immune system. If it doesn't work, she will need to be listed for a pancreas transplant again.
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Life on a Feeding Tube |
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