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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 Friday, March 31, 2006 10:00 p.m. Because of Carissa's reaction twice yesterday to Sargramostim, the nurses came to her room equipped with Benadryl and Tylenol prior to infusing any IV drug. Carissa was laughing because they were giving her Benadyl for things she had never reacted to, but their caution was appreciated. Carissa's white blood cell count fell again overnight so she was given a white blood cell transfusion this afternoon. She was given a fourth dose of Benadyl and Tylenol before the transfusion and she had no problem. However, three to four hours later, her chest, head, back, and teeth began to hurt, and she spiked a fever. Thankfully the reaction wasn't as severe as yesterday's, but it was a little unnerving for Carissa as well as the nurses. Dr. Costa made rounds a few minutes later and ordered Benadryl and Tylenol for Carissa again. He also placed neutropenic precautions on her room again, so a mask and gown will be required of all doctors, nurses, and visitors again. Otherwise, Carissa is doing so well. She looks great and is getting stronger. She is still on TPN, but is receiving 20 cc. of formula per hour through her j-tube. They will discontinue the TPN once she is able to tolerate enough formula through her j-tube. Later on, j-tube feedings will be discontinued as her new stomach and intestines learn to tolerate real food. Please pray for Carissa as they attempt to raise her white blood cell count. The hospital is the easiest place to catch infections and she is highly susceptible. She is on immunosuppressant drugs to prevent rejection of her new organs and with her white blood cells being low, as well, the risks are significant. Thursday: March 30, 2006 9:15 p.m. Carissa just had a second reaction (today) to the Sargramostim, almost eight hours after the first reaction. Her chest began to hurt suddenly (as well as her teeth). They have given her another dose of Benadryl and Tylenol. Dr. Costa confirmed that her symptoms are a reaction to the medicine. Thursday: March 30, 2006 8:00 p.m. Carissa was sitting up in a chair when we (Sharon & Celeste--here for a one day visit) walked into her room this morning. Her eyes were sparkling and her cheeks were rosy. She looked so good! Carissa stayed in her chair until late morning when she began to chill, spike a fever, and the color drained from her face. She had been pre-medicated for Sargramostim (medicine to stimulate her white blood cell count--same as yesterday), but she was obviously reacting to it again. They stopped the dose and gave Carissa a second dose of IV Benadryl. So the list of drugs Carissa is allergic to continues to get longer. Thankfully, Carissa's white blood cell count was up today. They had planned to give her a white blood cell transfusion, but decided that it wasn't necessary and didn't want to run the risk of another allergic reaction. Once Carissa recovered from the reaction, she decided to take a walk down the hallway. She made two laps up and down the two halls on 12 North with no support other than the IV pole she was pushing. Yeah, Carissa! Thank you, Lord! Wednesday: March 29, 2006 9:00 p.m. Carissa's white blood cell count is down, so everyone entering her room is asked to wear a mask and gown. But discovering that gowns and masks were required wasn't the most exciting event of the day. Carissa was given an IV to stimulate the growth of white blood cells. After about half of the dose was infused, Carissa began to have a reaction. She began to chill, her fever spiked, her chest tightened, her back ached, and she felt dizzy. They stopped the infusion and a dose of IV Benadryl and Tylenol was given to counter the reaction. A few minutes later her face turned deep red, almost purple, her fever spiked again, and then Carissa noticed that a rash was appearing on her arms. When we checked her chest, it was bright red, and the rash had spread to her stomach, as well. Carissa was given a second dose of IV Benadryl and IV Hydrocortizone, and the reaction finally subsided. The reaction lasted six or seven hours in all. We don't know yet whether the fever was a part of the reaction or if it is sepsis. Blood cultures were taken from her PICC line as well as peripherally (directly from her veins). Carissa no longer needs the canula (oxygen piece in nose)! It was awesome to see her today without either the NG tube or canula. She is enjoying being gradually freed from the many tubes that have entangled her every move. We had not heard what was growing in the muddy looking drainage from one of Carissa's JP drains, but Carissa informed me (Sharon) today that Dr. Kareem recognized the drainage as classic evidence of pancreatitis. Thank you for continuing to pray! Carissa continues to do well under the circumstances. However, today we were reminded that the potential for life threatening circumstances continue to be real. Tuesday: March 28, 2006 10:00 p.m. (Sharon) Carissa struggled through last night with a headache, but it finally went away. Her fever was low grade today, which also helped her feel better, but she is really tired tonight. Great news! Dr. Kareem removed the NG tube (drain that ran through her nasal cavity down her throat to her stomach to drain fluids) and two of the JP drains (four placed during surgery). The two remaining JP drains have fluid that is discolored, so the doctors want to keep an eye on those for a few days. Carissa had been eating popsicles and sipping on flavored water, but Dr. Kareem encouraged her to refrain from eating or drinking anything for a couple of days since the NG tube was removed. Stimulating her new stomach to handle food will take a while and he doesn't want her to vomit. However, they began j-tube feedings again tonight. We continue to praise the Lord for the way Carissa's body has responded to her transplant. As we talk to other transplant patients, they are amazed that Carissa got out of the ICU within two and a half days. Many patients are in the ICU for two to four weeks. And so far, she hasn't had to return. God is answering prayer! Specific prayer requests are for:
Monday: March 27, 2006 10:00 p.m. (Wayne) As I was going up to the 12th floor to see Carissa this afternoon, Dr. Kareem (head surgeon of the transplant team) and I were on the elevator together. He asked about Carissa and I told him about her infections and fever. I beat him to Carissa's room and warned her that he was on the floor, so she said, "I'd better get out of bed!" Earlier in the week he scolded her strongly (but lovingly) for spending too much time in bed. It's his trademark behavior that his post-transplant patients fear. So, she got up just a few minutes before he came into the room. When he entered the room, he told her to get out of her chair and get back into bed (he wanted to examine her). Carissa jokingly replied, "First, you tell me to get out of bed then you tell me to go back to bed." It was a cute exchange. Kareem examined Carissa and went through her records very carefully. He didn't seem to be very concerned but mentioned that they would make some adjustments to her medications. However, Carissa's fever dropped this afternoon, but spiked again this evening. John and Joy Gibson (Joy is our niece, daughter of Mike & Becky Patterson) are in Pittsburgh tonight, on their way from Michigan back home in NYC. Sharon, Mom, and I dropped by their hotel for an enjoyable time this evening. Monday: March 27, 2006 1:00 p.m. (Wayne) This is the 14th day of Carissa's post-surgery recovery. As expected for this time, the road to recovery is getting "bumpy." For example:
The doctors are concerned, but not overly so. These are typical issues that transplant patients face in the post-surgery stages. Sunday, March 26, 2006 9:30 p.m. Carissa continues to run a low grade fever. Carissa is taking IV Benadryl to prevent reactions to IV antibiotics four times a day, so she is sleepy most of the time. Cultures of the muddy looking drainage has something growing, but we don't know what type of infection it is yet. The good thing is that, so far, it is under control. A biopsy of Carissa's new small bowel was taken today and it looked normal. It was a little inflamed, but wasn't a concern. Saturday, March 25, 2006 9:00 p.m. Carissa hasn't felt well today. She is running a fever and has a severe headache in spite of the Tylenol she is taking as a pre-medication for IV antibiotics. The CT scan taken last night didn't reveal anything conclusive about the cause of the muddy looking drainage. They sent cultures of the drainage to the lab today. The CT scan did reveal something that appeared to be fluid in Carissa's lungs, so another x-ray was taken today. They also took an ultrasound of her liver because her liver counts were high. We don't know the results of any of the test yet. The doctors have added a new antibiotic to her regimen and have increased her dose of Prograf, which is an anti-rejection drug. They have stopped j-tube feedings until they sort things out. Debbie, Karis, and Dan (Karis' brother) came by for a few minutes this afternoon. We were happy to hear that Karis' rejection is only mild and should be brought under control with a few adjustments to her medicines. For that matter, Karis was dressed in real clothes and looking beautiful, and was leaving the hospital on a three hour pass. Congratulations, Karis! Friday, March 24, 2006 9:30 p.m. Transplant patients come out of surgery with drains that allow doctors to examine discharge and, if there is a suspected problem, allow access into the area from which the drainage is coming. Carissa has four of these drains. Today the drainage in one of the drains is muddy looking rather than pinkish. Dr. Bond says that Carissa could be bleeding a little internally or that pancreatitis could be causing the discoloration. Carissa will have a CT scan of her abdomen tonight. Carissa was in good spirits today because her fever was gone. However, this evening she became increasingly nauseated. Dr. Bond stopped the j-tube feedings when he saw the color of the discharge, so the nausea wasn't caused by the feedings. We believe the Lord has heard the prayers of friends and family, and that is why Carissa has recovered so amazingly well (considering her condition) so far. Prayer is still vital and we ask that you continue to lift Carissa's name before the Lord. Please pray for Karis, as well. The doctors believe she is in rejection. It is extremely discouraging for Karis. She was scheduled to be released from Children's Hospital this coming Monday. Thursday, March 23, 2006 9:45 p.m. Carissa began running a fever today. Dr. Bond said that it is typical for problems to begin to appear eight to ten days after a transplant. He wasn't concerned, but is being careful. They took another biopsy this morning to check for rejection. Rejection is common (to be expected), especially this early in the transplant process. It needs immediate attention, but is controllable in most cases. Biopsies are taken routinely (twice a week) for the first two to three months after a transplant to insure that rejection is controlled, and are taken periodically, as needed, thereafter for life. Dr. Bond commented that Carissa has done so well she could surprise us and have no problems, but it is highly unlikely. Our transplant friends' experiences have prepared us for the expected up and downs. But we pray for God's strength as we face them. Carissa was moved to the 8th floor of Montifiore tonight because the 12 North wing was closed for unexpected repairs. It is a temporary situation, but we don't know how long it will last. Wednesday, March 22, 2006 5:00 p.m. (Sharon) Carissa continues to do well. She sat up in a chair for several hours and walked down the hall for the first time. She had just climbed back into bed when Dr. Bond made a round, but the nurses confirmed her efforts and he was satisfied. Dr. Bond pulled out the pigtail from Carissa's right lung. She's thrilled! Most of the pain the last few days has been from the pigtail. Carissa says that she has very little pain from her abdomen. Considering the size of the incision, it seems incredible. Today one of the nurses began training Carissa to handle her doses of medicine when she is released from the hospital (to the Family House McKee). Although we believe it will still be several weeks before that happens (based on experience), it's thrilling to think that steps are being taken towards it. Thank you for the cards you have sent Carissa. They are a fun part of each day and brighten her room. Since Celeste mentioned my birthday, I'll say that it has been great. I have received more cards than I ever have (especially from friends at Grace Fellowship) and Lin brought yummy brownies to Carissa's room to celebrate. I visited Karis and Debbie today, and marveled again at all that Karis has gone through and the sweetness of her spirit through it all. I am blessed! Tuesday, March 21, 2006 9:30 p.m. (Sharon) Today was eventful! Dr. Kareem made a number of changes in Carissa's doses of medicine including reducing her pain medicine to every four hours instead of every two. He also gave Carissa his well known "big bad bear" post-transplant lecture about getting out of bed, not being a baby, etc. Oh, well... We knew it was a matter of time! Carissa sat in a chair for over an hour today and she walked around in her room several times. She was dizzy and weak initially, but did better as the day went on. She also ate two popsicles! (Thanks for the permission, Dr. Kareem!) She had been eating ice chips and was longing for flavor. A number of transplant friends stopped by to see Carissa today before or after a small bowel post-transplant meeting at Montefiore. It was so good to see friends that began the transplant process with us over a year ago. Carissa also enjoyed seeing Bev and Natalie, who are friends from the Family House. Carissa is pretty exhausted tonight. Too many good things in one day! She needs a lot of rest still. It is only the eighth day... Monday, March 20, 2006 1:30 p.m. (Celeste) Well, it's day seven. At this time last Monday Carissa was in surgery and Dr. Kareem had just given Mom the update the Carissa was ready for her new organs once they'd arrive at the hospital. It's amazing... so much has happened since then and she's already come so far. This morning, Carissa had her first small bowel biopsy and to quote her "It was a piece of cake!" We were thrilled to hear it was easy on her. Dr. Bond was the one who performed the biopsy and said that the scope looked good and that we should have biopsy results later today. We also got some information this morning about how Carissa got her new organs. Dr. Bond, a member of the small bowel transplant team, talked with Carissa this morning before her biopsy. He's the doctor that gave Carissa a big hug and a kiss to comfort her after her last transplant offer fell through in February. Dr. Bond works on a rotation between Montefiore Hospital and Children's spending one week a month at Children's. Last week was his week at Children's. So, we were somewhat disappointed that he had not been able to be involved in Carissa's transplant. Little did we know how instrumental he was in making Carissa's transplant possible. On Sunday night, organs became available and were offered to the transplant team at Children's hospital. Dr. Bond convinced the doctors there that Carissa needed the organs more. As a result, the organs were offered to Carissa... and you know the rest! We can't even begin to express how grateful we are for this amazing gift. Carissa started receiving Prograf (also known as FK) through her j-tube today. It will take some time for the doctors to get the dosage just right through her j-tube. Carissa also started receiving a small amount of feedings through her j-tube today. She's receiving 5 cc's per hour, which is just enough to begin to nourish her new small bowel which will promote healing. The goal is to be able to increase those tube feedings so that she can reduce her dependency on TPN so that damage to her new liver from the TPN will be kept to a minimum. Carissa also requested to start on a liquid diet today. She's been given permission to sip on some water and hopefully soon she'll be permitted to have popsicles and juice. Mom's birthday is on Wednesday. She's enjoyed all the cards she's received so far and says that Carissa's transplant is her birthday present! However, I'd love to see her mailbox flooded with birthday cards! Of course, if she sees I've posted this... she might take it off! =o) Dad and I are heading back to Harrisburg now. While it'll be hard for us to be away from Carissa, we know that she's now ready to have some time by herself and that hopefully she'll be able to get more rest. Of course, Mom and Granny will continue to be with her and we'll return as soon as possible. Sunday, March 19, 2006 10:30 p.m. (Celeste) Mom is spending the night with Carissa tonight. Dad and I will be heading back to Harrisburg tomorrow. We'll both return to be with Carissa, Mom and Granny as soon as we can. Carissa is still experiencing a lot of pain from the two pigtail drains placed last night and this morning to drain fluid from her lungs. We're fearful that the drain in the left lung may have struck a nerve like one did in September of last year. Dr. Costa has been very sensitive to Carissa's needs and is doing a lot to make sure she's comfortable. For example, before the pigtail was placed this morning, Dr. Costa requested a portable ultrasound be done in Carissa's room on the 12th floor. This is such a rare occurrence on that floor that Carissa's room was flooded with nurses who wanted to see it happen. Typically, patients have to be taken down to the radiology dept. for an ultrasound. Beyond that, Dr. Costa preformed both minor surgeries to place the pigtail drains in Carissa's room as well and has provided additional pain medication to try to help her get through this. It's obvious to us how much Carissa means to the transplant team as well as the nursing staff. We've heard so many comments from the nurses of "Oh, we just LOVE Carissa!" Carissa will be having her first small bowel biopsy tomorrow morning at 6:30. While we feel pretty good about her condition right now, this first biopsy will be the first time we'll have a true indication on whether or not her body is beginning to accept her new organs. We've seen some signs already that indicate that is the case, but we can't help but be a bit anxious about waiting for the biopsy results. Primary Prayer Requests: 1. Carissa's biopsy tomorrow - that the results will be negative for rejection and that she will experience as little pain from this procedure as possible. 2. Continued pain management for Carissa. She is very discouraged that she has had to increase her frequency of pain medication again. She had begun to back off on the frequency until the pigtail drains were placed. 3. Carissa's lungs - that the fluid will be completely drained so that her lungs will be protected from the threat of pneumonia. 4. For rest for Carissa and the rest of the family. Mom will now take on more responsibility for being with Carissa since there will be less of us here to relieve her. Granny will help as much as possible as well, so they'll both need good rest to stay healthy. 5. For our donor family. While we still know nothing about them, our hearts are with them while we walk the line between our hearts being broken for their loss and the hope that we feel for Carissa's recovery. 6. For our dear friend Karis. She continues to have some unusual things happening during her recovery. You may follow her progress on her website at: http://www.aup.org/Karis/latest_update.htm Sunday, March 19, 2006 2:45 p.m. (Wayne) This morning the doctor placed a pigtail to drain Carissa's left lung, as was done for the right lung last night. These drains are terribly painful. They seem to be working well, so Dr. Costa hopes to remove them tomorrow...if everything goes well. Carissa's pulse-ox (oxygen level in her blood) is at a good level now. They plan to do the first biopsy tomorrow to check for rejection and the results might be known as early as Tuesday. She slept pretty well last night and this morning. Celeste spent the night (3rd night in a row) again with Carissa. Saturday, March 18, 2006 11:20 p.m. (Sharon) Carissa's pulse-ox (oxygen level in her blood) has been watched closely throughout the day. An x-ray indicated that fluid had built up in her lungs and it was confirmed by a CT scan. Dr. Costa was giving Carissa a diuretic to encourage the excess fluids to drain, but it caused her potassium level to drop to 2.9. Carissa has had cardiac arrests when her potassium was low, so Dr. Costa felt it was necessary to place a pigtail drain from her right lung rather than use more diuretics. He may need to place one from her left lung tomorrow. Where is the fluid coming from? IV medicines: potassium, magnesium, multiple antibiotics, Prograf (anti-rejection drug), TPN (nutritional formula), blood transfusions, and more. Carissa is finally sleeping! She fell asleep several different times during the day and for several hours. Her nurse is coordinating nighttime supervision and doses of medicines to prevent waking her up more than necessary tonight, as much as possible. We are so thankful for the excellent nurses and aids on the transplant floor of Montifiore Hospital. The care of transplant patients is highly demanding, but they work carefully and efficiently, with a caring spirit. Their observant eyes will allow us to sleep tonight. We also appreciate the caring spirit of the transplant doctors. Dr. Costa knows that Carissa has bad memories of pigtails from her ICU stay in August and September. A nerve was hit and caused tremendous pain (placed by respiratory personnel). Before beginning the procedure tonight, he promised Carissa that he wouldn't hurt her. No medical procedure is pain free, but his carefulness diminished it significantly. Saturday, March 18, 2006 12:30 p.m. (Celeste) Carissa slept a little more last night, but every time she'd start to fall asleep the nurses would come in and need to do something to her. It's not that they want to keep her awake... there's just that much stuff that they need to do. So, needless to say, she's still absolutely exhausted. Carissa's pulse-ox (the amount of oxygen in her blood) dropped last night, so they started her on 2 liters of oxygen through a nose piece last night. That seemed to resolve it through the night, but this morning it was down to 95% again while she's still receiving the oxygen. So, Dr. Costa has ordered a chest x-ray to ensure that there isn't any fluid building up in her lungs or anything else that may be causing her breathing to be more difficult. Carissa will also be receiving a unit of blood today. She has continued to have blood in her bowel movements, while the amount has been much less recently. However, she still needs to receive the blood transfusion. Please pray that Carissa does not have any fluid on her lungs and that her breathing will become easier again. Also pray that she be able to get some sleep... she desperately needs it at this point. Friday, March 17, 2006 11:00 p.m. (Wayne) Carissa did sit up for a few minutes today and did fairly well with it. She's still not sleeping, but it is very encouraging to see the pain lessening somewhat. She and I smiled and chuckled through an episode of "Tool Time" this afternoon, as well as some other TV shows. Celeste is spending the night at the hospital with her again. They are in the process of loading Carissa's CDs on her new IPod. In addition to the prayer requests of yesterday, pray that she will be able to get some sleep. Although she is doing very well, we know that it would be a big boost for her to get a good night of sleep. Friday, March 17, 2006 1:30 p.m. (Celeste) Happy St. Patrick's Day and Happy Birthday to our dear friend, Dave Kornfield (Karis's Dad)! I spent the night at the hospital with Carissa last night. Now that she's out of the ICU, we're free to be with her whenever we want. It's refreshing not to need permission from the nursing staff to be with her. She's still not resting very well. Last night she probably slept a total of 2 hours. She's not able to get comfortable and settle down to go to sleep. She is receiving a low dose of a sleeping medication, but it hasn't been enough to help her sleep. Dr. Costa came in at 1:00 a.m. and then again around 10:30. He's very pleased with how she's doing and said that all of her drains look really good. Carissa has begun to produce a small amount of stool in her ileostomy! This is a great sign of progress as this indicates that her new small intestine is beginning to function! Dr. Costa said that today is the day that he really wants to get Carissa up a little bit. He said that he wants her to sit on the edge of her bed and if that goes well, he wants to see her in a chair later this afternoon. This should be much easier to do now that she's on the regular floor rather than in ICU. Dr. Costa also considered reducing the small amount of Prograf (anti-rejection medication) that Carissa is receiving by IV and beginning administering some through her J-tube directly into her small intestine. He said that he's not quite ready to do that yet since he doesn't want the Prograf to sit in her body for too long and cause the levels in her blood to get too high. So, for now, she's still receiving a low dose through her IV. However, he said that he might change that tonight. Carissa is managing her pain a little better. She knows that it's important that she back off her pain medications slowly. Last night, she managed to wait a few minutes longer each time in- between doses until she finally managed to wait 3 hours rather than 2. Her pain is still really difficult, but it seems to be lessening a little at a time. Thursday, March 16, 2006 10:00 p.m. (Wayne) Dr. Kareem came to see Carissa earlier this evening and told her that she looks very good. She has a slight fever, but Tylenol is keeping it down. She is passing some blood in the the stool, but Kareem didn't seem to be concerned. He explained that this is common for her situation. She's on a two-hour cycle for pain medicine and the last 30 minutes of that period are especially difficult. Her Prograf (anti-rejection medicine) levels have been steady so far, getting a fairly low dose by IV. She'll need larger doses when she begins to take it orally. Primary Prayer Requests:
Thursday, March 16, 2006 5:00 p.m. (Celeste) Today we all got an amazing surprise! I walked into Carissa's ICU room this morning as her nurse told me, "They're working on getting her a bed upstairs (12 North), once they've got something lined up... she's going to be moving up there today!" I just couldn't believe it. Could it really be possible that Carissa would spend less that 3 days in ICU? Well, it's for real... she was moved to 12 North, room 1285 at around 2:15 today. As a result of this move to the regular pre/post-transplant floor, Carissa has been freed up from a lot of the IV lines. They removed her femoral line (in her groin) which had a couple different IVs running through it, and they replaced the very large central line in her neck with one that is smaller and only has 4 lumens (access points that extend from the central line so that several medications can be run at the same time). She hasn't gotten up into a chair yet, but she expressed earlier her desire to do so soon. She's very tired now after moving from ICU. She also did not sleep last night, so that's adding to the exhaustion. Her room on the 12th floor is MUCH quieter and she should be able to sleep better as a result. Her pain is still very severe, so please keep praying urgently about that. Very shortly after she got moved up to the 12th floor, our dear friend Gary found her and stopped in for a visit. Gary and Carissa were listed for transplant on the same day, March 3, 2005. Gary got his transplant last April and received all the same organs that Carissa did. He was a huge encouragement to her, it was evident in her face. She knows he has fought this battle first hand and he truly knows what she's going through. Gary, who had some very scary days after his transplant, is doing very well and will have his ileostomy reversed next week. That's really the last major step in the transplant process, so we're excited for him about that. Wednesday, March 15, 2006 11:30 p.m. (Celeste) Carissa remained very alert throughout the rest of the day. Having the ventilator out already is such a blessing. She's able to let us know more of what she's needing. We know that has to relieve some frustration for her. Carissa wasn't able to get up into a chair today. Hopefully that will be something she can give a try tomorrow... or at least soon. The oxygen levels in her blood are still really good, there doesn't seem to have been any negative impact from taking her off the ventilator. Praise the Lord! The main issue Carissa is facing right now is pain. She's really in a tremendous amount of pain. But, this is not something that is unexpected. She is receiving pain medication, but it's not enough to totally relieve her of pain. Pain management is a complicated issue after transplant. The pain medications have a tendency to slow down the function of the newly transplanted organs, so giving large amounts of pain meds is too big of a risk to take. She's getting enough to take some of the edge off, but not so much that she's "pain free." Carissa was thrilled to learn tonight that she received a liver as a part of her transplant. When Mom told her that had happened, it was obvious that a huge burden had been lifted from Carissa's mind. With the knowledge now that her liver really wasn't in good condition and really did need to be transplanted, we're all relieved to know that we won't be waiting for a separate liver transplant later. Carissa understands that having the liver as a part of this transplant does make the recovery more difficult and more painful, but she seemed okay with that because she knows what she would have had to face later otherwise. Carissa was given a small dose of a sleeping medicine tonight, so hopefully she'll be able to sleep a little better tonight. The pain has made it difficult for her to get really comfortable enough to sleep well. Primary Prayer Request: 1. Pain management for Carissa - that the pain will lessen some each day so that she can rest and recuperate. 2. Peaceful rest for Carissa and our family. 3. For our donor family - we still don't know anything about the donor... not even what state the organs came from, but we know that they are grieving deeply, whoever they are. We are overwhelmed with appreciation for their amazing gift and we grieve with them. Pray that if they do not know the Lord that they will be drawn to Him through this extremely difficult time. (Praise the Lord that those are the only major request! We pray that it stays that way!) Wednesday, March 15, 2006 3:15 p.m. (Celeste) Carissa had her ventilator removed today at noon. She's thrilled to have that out as she's now able to talk to us a little bit. Her throat will be sore and she won't be able to speak very loudly for a few days, but it's great for her to be able to tell us better what she needs so we can try to keep her more comfortable. They plan to try to have Carissa sit up in a chair for a little while this afternoon or evening. It's important for her to be able to do that now that she's off the ventilator as it opens her lungs up more and helps to continue to fight off pneumonia. Just a reminder that Carissa is not able to receive any live flowers. Since she and other patients are on immunosuppressants, flowers are not permitted in the transplant units of the hospital. Please feel free to continue to send cards to the Family House so that Mom can take them to Carissa. The address is:
233 McKee Place, Room 202 While balloons and things like that will be permitted by the hospital, there is not much space in her ICU room at this point. It would be best to hold off on sending things like that until she gets into a room on the 12th floor where she'll have more space if people want to send things like that. Thanks! Wednesday, March 15, 2006 11:15 a.m. (Wayne) Carissa is very alert this morning and is communicating by nodding, using hand gestures, and writing notes. Carissa has indicated that she remembers a lot about yesterday, but that it was a day that she doesn't want to remember...probably because of the pain, trauma, etc. The doctors are very pleased with her progress. The ventilator will be removed today. Wednesday, March 15, 2006 2:00 a.m. (Celeste) We just returned to the family house after picking Dad up from the airport. His flights, while there were a few small bumps on the way (like when they didn't want to let him board his flight from Bangkok to Shanghai because he didn't have a visa to get into China), went well and he got a lot of sleep on the planes. We had requested special permission ahead of time to allow Dad to visit Carissa tonight after he arrived, even though it's several hours since visiting hours ended. Dad was pleased to be able to visit Carissa briefly and see that she's doing well. Carissa opened her eyes and looked up at us when we went into her room. We told her that Dad was here and she nodded slightly. I'm sure that she's glad to know he's safely home as well. Carissa was doing well when we saw her, so as far as we know, there's no change to report regarding her. Now, off to bed for all of us so we're ready to face another day. Tuesday, March 14 2006 10:00 p.m. (Celeste) "Give thanks to the Lord, call on His name, make known among the nations what He has done. Sing to Him, sing praise to Him; tell of all of His wonderful acts. Glory in His holy name; let the hearts of those who seek the Lord REJOICE!!" Psalm 105:1-3 Carissa has done very well today... it's amazing to look at her and realize it hasn't even been 24 hours since she came out of surgery! Considering all she has been through in the last two days, she looks really good. She does have some swelling in her body due to the large amounts of fluids she has been receiving, but the doctors aren't concerned about that right now as her fluid output has been good all day. Her color looks really good though... better than it has in awhile. Dr. Kareem saw her around 6:15 this evening. He jokingly looked at Carissa and said "Carissa, did we do the transplant or what?" Carissa enthusiastically nodded her head (well, as enthusiastic of a response as I've seen out of her today). He said her incision looks good and he's pleased overall with how she's been doing. While they were originally talking about removing her from the ventilator today, Dr. Kareem said that he'd rather she have one more night on the ventilator so that she can rest well before working on that issue. He told Carissa to expect to be off the ventilator tomorrow. They have reduced her oxygen to 40% and we are told that she is "breathing over the ventilator." What that means is that she is primarily breathing on her own even though she still is on the ventilator. She's getting benefit from it, but it appears she really doesn't need it at this point. She does not have any signs of a build up of fluid in her lungs at this point. Everyone has said that they don't feel she'll have any issues getting off the ventilator tomorrow. What a great victory that will be so soon! Carissa started receiving TPN again tonight. For those of you who don't know, that's the nutritional fluid that Carissa has been receiving intravenously for a long time. Patients return to TPN after transplant while their body adjusts to the new organs. Eventually they will begin small amounts of tube feedings into her J-tube directly into her new small bowel. They'll slowly increase that feeding and reduce her TPN until someday she'll be TPN free! Yes, eventually Carissa will be able to eat normal foods by mouth, but there is a lot that must happen in her recovery before that time comes. Dad should be arriving in a few hours into Pittsburgh. We're all anxious to have him join us and I know he must be anxious to see Carissa and have a better understanding of what's going on. While we've tried to keep in contact with him during his travels, it's tricky with the long flights. He's been delayed in Chicago, so we're waiting to see what time he'll be arriving tonight... but he'll get here. He's managed to sleep a lot on his flights here so far, so even though it'll take him awhile to adjust to this time zone again, he's rested well to this point. As some of you have followed Karis's website through her journey after her transplant, we've learned that sometimes it's helpful to pick out the most important prayer requests and list them so that people understand what to pray for specifically. I'll try to use that format at the end of each day's update. Primary Prayer Requests: 1. That Carissa's lungs will stay clear of fluid build up and that she'll be able to be successfully removed from the ventilator tomorrow. 2. That Carissa's pain will be manageable during this time. 3. That Carissa will be able to rest peacefully so that her body can recuperate. And that the family can also get good rest so that we can keep up our health during this time as well. 4. For the donor family. We know they have experienced a great loss and grieve deeply with them during this time. We don't know anything about the donor at this time. Tuesday, March 14, 2006 3:45 p.m. Faith: First of all, Sorry on the delay of posting an update. There was some confusion on my part as to who was to post today. Celeste was the first to see Carissa in the Transplant ICU this morning when visiting hours began. Right away Celeste noticed that Carissa was "quite active". She seems to be trying to get comfortable moving around in her bed...she's even able to brace her feet against the the bed and lift her hips off the bed to move a bit trying to get comfortable. Celeste said that Carissa will open her eyes and look straight at you if you call her name. She's also nodding her head to respond "yes". If her reply is no, however, she'll just not respond. Carissa is still on a ventilator, but they are hoping to remove that sometime today. Dad flies into Pittsburgh about 11:30pm tonight. Celeste will pick him up at the airport. We appreciate your thoughts and prayers and Mom knows you are thinking of Carissa. She's receiving lots of calls, but isn't going to be able to respond to them due to lack of time. I'll post on this site as soon as I hear something from them. Sorry again for the delay...I feel bad about that.Thank you again for your prayers. We feel a peace that can only come from God during this time. Carissa does seem to be in a lot of pain, but is otherwise doing quite well. Yeah God! Tuesday, March 14, 2006 1:00 a.m. Faith: It's over! An exhausted Dr. Costa just declared Carissa "very stable" just before she was wheeled past the waiting room on her way to the Transplant ICU! A new segment of the journey has finally....FINALLY begun! Monday, March 13, 2006 11:30pm Faith: Dr. Kareem just came in and gave the good news that Dr. Costa is now closing! It's done and from what they understand there were no real complications. Dr. Kareem said that the organs were a bit big for Carissa, but that they would work. Mom knows from others that having new "big" organs is not uncommon at all. Carissa may look a bit pregnant for awhile, but her body should adjust. Since her new organs are a bit big they will not be able to close her muscular tissue, but only skin tissue. Also, not entirely uncommon apparently. They will close her muscular tissue later after she recovers quite a bit. Dr. Kareem also expressed that he was very glad that they decided to include the liver in this transplant. So, Carissa has an all new stomach, small intestine, liver, and duodenum, but she has two pancreases. :-) We can tease her about that later perhaps! Don't worry...that's just how they do that transplant. Carissa's blood pressure did well throughout the surgery despite her recent troubles. She did have a blood transfusion, but Dr. Kareem said that she was did well after the transfusion. Mom had talked to Dad recently during his layover in Bangkok. He'll be arriving in Shanghai in about four hours or so and he'll get this information then. Mom, Granny, and Celeste are still at the hospital waiting to hear that Dr. Costa is done closing and then will go into see Carissa before heading to bed for some rest. My heart is singing praises to God, our Creator, Provider, and Healer. Our family thanks each and every one of you for your prayers today and during the previous part of this journey. Today Carissa and our family began a new segment of this journey. We know that the next few weeks will be hard, scary, and painful. But, we have a Rock to hold to during the hardest parts of this next journey. God, our Father, has proven to be all that we need and will continue in that manner no matter what the future holds.Monday, March 13 2006 9:00pm Faith: Mom called again and Carissa is doing well. The doctors said a couple of more hours, and that if she had not heard from them by midnight to give them a call! Monday, March 13, 2006 7:30 pm Faith: Mom just called and said that she was recently updated. Carissa is doing well in surgery and it will be many more hours before the surgery is over. That's all the information they gave her at that time. Debbie Kornfield (Karis' mom) is with her along with a few men from the Kornfield's church. Mom, Debbie, and Granny have done a puzzle to pass the time. It'll be a long night, but I think we all feel God's peace as we wait. I'll keep you updated as I hear. Monday, March 13, 2006 3:00 p.m. Carissa called from the Montifiore Hospital at 3:49 a.m. to tell us that organs might be available and that they were taking her to the holding area at 4:30 a.m. Carissa was calm and quiet while she waited. Experience had taught us to not get our hopes up. At 8:25 a.m. she was taken from the holding area to the operating room. Dr. Kareem gave us an update about 1:30 p.m. Everything is ready for the organs when they arrive. Carissa is sedated and and, we believe, surgically open. She is very stable. The team of doctors will be transplanting Carissa's liver as well as the pancreas, duodenum, stomach, and small bowel. A biopsy confirmed that her liver isn't good. The surgery is expected to take 12-15 hours, so it will probably be midnight or after before we will be able to see her. We praise the Lord for so many things: organs when we were becoming so weary of the wait, a liver with this transplant, the stability of her condition, the skillful hands and brilliant minds of the surgeons, the fact that God is in control, precious friends and faithful prayer warriors, Wayne's mom being with Sharon in Pittsburgh, and so much more. Wayne, Carissa's dad is in Thailand. With the help of Celeste (Carissa's sister) and Patti Haller (ABWE), it looks like he may be in Pittsburgh by 11:15 tomorrow night. Sunday, March 12, 2006 Carissa's back in the hospital. She was scheduled to have blood work this morning, but her blood pressure dropped to around 60/40 while she was there. Carissa was given three bottles of albumen plus fluids, but her blood pressure still didn't go up. She is on a heart monitor so they can keep a close eye on her. Friday, March 10, 2006 Carissa's CT scan revealed that her sinus infection is worse rather than better. We were surprised because her symptoms have improved. Unfortunately, Cipro doesn't kill the wide spectrum of bacteria that is needed to fight the infection. Carissa reacted to drugs in the Penicillin family, so she isn't able to take them, and they are the most effective. The doctor will change her antibiotic and she will have another CT scan next Friday. Celeste (Carissa's sister) is coming to visit tomorrow! We are looking forward to being with her, and Granny is especially excited. Faith and Ben will be moving to their new house tomorrow. Sharon was able to see it last week when she was in Harrisburg. We're so happy for the extra space in their new home and for the great yard, playground nearby, and a great place to ride bikes. Thursday, March 9, 2006 Carissa's blood work was still not what the doctor's want to see. Dr. Kareem added another liter of fluids to her TPN (three liters--she should be developing some muscles as she carries her bag around!) and she is taking another two liters of fluids a day by IV. She is scheduled to have more blood work on Sunday morning to determine whether we need to adjust the amount. Carissa has fought a sinus and line infection (bacterial) for the past week. She is doing better, but has an appointment tomorrow morning for a CT scan of her sinuses to be sure it is clearing up. We are enjoying having Granny with us in Pittsburgh and she is enjoying being with Carissa and seeing what she is able to do first hand. Carissa went with us to the grocery store tonight and she enjoyed picking out foods to nibble at. Wayne (Carissa's dad) is in Thailand for two weeks. He has planned ahead for someone to take his place teaching just in case he gets a call saying that Carissa is undergoing a transplant. It could happen... Wednesday, March 1, 2006 Carissa's electrolytes were out of balance today. She went to 7 West (transplant service center) for albumen and a liter of IV fluids, to be followed up with more IV fluids at the Family House. She will go to 7 West again tomorrow to be sure her electrolytes are back to normal. Carissa's "Granny Haston" is staying with her in Pittsburgh this week to give Sharon a break. Granny is enjoying being able to help with Carissa's care and is getting to know friends at the Family House. Incredibly enough, one of the transplant patients at the Family House McKee (Harold) lives about an hour from Sparta, Tennessee where Granny Haston lives. Harold bought a car from Ed Roger's Chevrolet in Sparta a few months ago. Small world! We're thankful for friends at the Family House who are available to help in any way needed. Sharon normally drives Carissa to the hospital for the transplant clinic on Wednesday. In Sharon's absence, Carissa could have ridden the shuttle, but our friend Lance pampered her with a ride to and from clinic. Thanks, Lance!
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Life on a Feeding Tube |
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