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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, June 30 - 10:00 p.m. Carissa continues to improve. Though she still sensed a little fogginess, it wasn't apparent to others. The only symptom that was really bothersome was her fever. She spiked up to 102.8° this afternoon, so she wasn't released today after all. Dr. Costa decided to give her IV Zyvox today and plans to release her tomorrow. Please pray for the family of Veronica Pennington, the Vice President of G-PACT, the non-profit organization established for gastroparesis awareness by Carissa and other gastroparesis patients. Veronica passed away suddenly this morning. Veronica was a dear friend of Carissa's as well as a fellow visionary in the formation and promotion of G-PACT. She will be sorely missed. Pray for Matt, her husband, and their two children, Aaron & Nick. Thursday, June 29 - 10:45 p.m. Carissa was much better today. She felt little to no symptoms until about five this evening. It may be a while (month or more) before she is symptom free, but it is a big improvement. She may be dismissed from the hospital tomorrow. Wednesday, June 28 - 9:00 p.m. Carissa was better today. Her fever and heart rate were under control, her emotions are becoming more stable, and her mental clarity is improving. She slept about nine hours last night. Praise the Lord! An infection was positive in Carissa's lab work today. We are praying the infection will be conquered and that the fevers will come to an end soon. Other symptoms Carissa has been dealing with are typical for post-transplant patients (100% experience them to varying degrees) because of the many powerful drugs (including steroids) that they have to take. As their organs begin to absorb more effectively, the drugs have to be adjusted to keep them properly balanced. Carissa had felt that IV meds were the cause, but now we know that her oral medicines have contributed equally. Thank you for praying! By God's grace, another battle is being won. Tuesday, June 27 - 10:30 p.m. Though it appeared that Carissa had made a turn for the better, she is still having major problems. Her fever spiked to 103° this afternoon, her heart rate was close to 200 at one point, her head continues to be foggy, and her emotions are constantly on a roller coaster ride. Please pray! Tuesday, June 27 - 12:30 a.m. Carissa has made a turn for the better. We are so thankful! She needs sleep, so that is our main prayer request. It has been an exhausting two weeks. Sunday, June 25 - 9:15 a.m. (Wayne) Sharon was able to come back to the apartment at 1:00 a.m. and we both got a pretty good night of sleep. Carissa called about an hour ago to tell us that she slept most of the night and is trying to go back to sleep. Things seem to be improving. Saturday, June 24 - 11:15 a.m. (Wayne) Sharon got a good long nap here at the Residence Inn late this morning and early this afternoon and then returned to the hospital at about 5:30 p.m. She will be staying with Carissa tonight while I try to sleep here at the Residence Inn. When Carissa was moved out of ICU, she was placed in a room (on 12-S, for those of you familiar with Montefiore) with no electronic monitoring systems. I urged the doctor to move her to 12-N so that her vital signs could be electronically monitored, which the doctor did do. We feel much better about her current room situation. It was a long day. Carissa's vital signs have generally been good, but she's had episodes throughout the day, some of which have been quite intense. During these episodes Sharon and I have to help her focus on good thoughts; it's an exhausting process and we are both mentally and physically drained. Carissa hasn't slept in days! We have no idea how she keeps going, but she tells us she's not sleepy or tired. Saturday, June 24 - 8:15 a.m. (Wayne) Sharon just called. Carissa had a rough night. She didn't have any major episodes but was fighting them back most of the night. I'm going to the hospital to relieve Sharon.
Friday, June 23 - Midnight (Wayne) I just arrived from Harrisburg and stopped at the hospital for about an hour, so I don't know much about the details of what happened today. Sharon called me late this afternoon to tell me that they were going to release Carissa, but she spiked a fever of 104.2 as they were prepping her to leave. Instead of releasing her, she was moved out of ICU to a room on 12N. When I left the hospital just a few minutes ago, her fever was down to 99.2. She wanted Sharon to stay with her tonight, since she's on a regular floor where she isn't watched as carefully as she was in ICU. Thursday, June 22 - 11:00 p.m. Carissa slept for the first time since Saturday night when her reactions first began. She slept from 9 p.m. last night to 8 a.m. this morning. She felt so much better. Today Carissa requested that IV medicines be stopped until the doctors find a way to prevent her reactions. She doesn't want to be difficult, but the reactions aren't bearable. Slowing the rate down significantly helps, but it isn't sufficient for several of the drugs. The doctors are afraid to discontinue IV antifungal drugs because she could have an undetected fungus infection. Considering her history, we understand the possibility. The doctors are uncomfortable about giving her the antifungal medicines by mouth because she might not absorb enough to fight a fungus effectively. Although her organs are absorbing nutrients, she is being given larger than normal doses of magnesium, potassium, etc., right now. It would risky to give larger than normal doses of antifungal medicines. They don't have a way of determining how much to give. Pray for the doctors as they try to figure this out. Please pray for Carissa, as well. This isn't an easy experience. Wednesday, June 21 - 11:00 p.m. (Sharon) Carissa was much better for most of the afternoon and evening. She was able to sleep for a few minutes two different times, and was asleep tonight by 9:30 p.m. Carissa firmly believes that the "episodes" are related to drug interactions. She refused to take IV Benadryl today because of the effects that quickly followed doses yesterday. The doctors cut back on as many IV medicines as possible today, and we believe it made a difference. Those that she had to take were administered extremely slowly which diminished the effects significantly. She was also given Ativan twice today as a pre-med instead of Benadryl, and her blood pressure and pulse dropped lower that it has been in days and the symptoms disappeared, so she was able to sleep. Lin (Gary's mom) offered to stay with Carissa so Sharon could sleep a while this morning. Lin was fabulous with Carissa. She understands what we are dealing with and was a super coach. She was the one that recommended that Adavan be used as a pre-medication instead of Benadryl. The doctors agreed to try it and it worked. Thank you, Lin! I (Sharon) am back at the Residence Inn with hopes of a good night's rest. The nurse has my cell phone number and Carissa's cell phone is right next to her if I'm needed, and I'm only five minutes away. Wayne prepared to return to Pittsburgh today, if needed, but we hope Carissa continues to improve so that he can tend to his many work-related responsibilities at this time of the year. Tuesday, June 20 - 11:00 p.m. (Wayne) Carissa did very well during the night, last night. All three of us (Sharon, Wayne, & Celeste) were able to go back to Residence Inn for a good night of sleep. Her "episodes" (that's what I'll call them, since the doctors don't exactly know what to call them) started up again this morning and continued throughout the day, but they were lighter than what she experienced Sunday and Monday. Celeste and I needed to go home to Harrisburg and Carissa encouraged us to do so, saying that she was not too concerned about them. However, while we were en route home, Carissa had a fairly major episode, though not as bad as the one on Sunday night in which she totally passed out. All of the neurological tests taken on Monday produced good results. That's encouraging. However, the cause is still unknown. Celeste and I are both at home (Harrisburg). If things continue the way they were going earlier this evening, I'll drive back to Pittsburgh tonight or early tomorrow.Monday, June 19 - 10:00 p.m. (Celeste) Praise the Lord... Carissa seems to have achieved some level of stability! We have no doubt that the changes we have seen today are a result of the fervent prayers that so many have offered today. Shortly after I arrived this morning, Carissa told us that she thought that she was going to try to get some sleep (she hadn't slept in over 48 hours). Literally, within seconds of that statement, she was sound asleep. Carissa's high blood pressure and high temperature had begun to subside allowing her some much needed rest. She slept through a very persistent Ophthalmologist who had to pry her eyes open to check for infection and through several attempts from her nurse to get Carissa to wake enough so that she could just take her temperature! At 2:00 p.m., Carissa was taken for a MRV (an MRI of the venous system) and we were told to expect her to return in about an hour. When Daddy and I returned a little after 3:00 p.m., Carissa was a completely different person. She was wide awake, her blood pressure, heart rate and temperature were completely normal and she was able to talk with us as clearly as if nothing had happened in the last two days! The severe headache and pain that had plagued the left side of her body for hours had substantially subsided. We were amazed! We almost didn't know how to respond, so we just enjoyed the few moments we had with her like that. Within a half hour or so, the Neurologist who has been assisting with Carissa's case since yesterday came in to inform us that the MRV did not show enough conclusive evidence as to what has caused the nearly unbearable "episodes" that plagued Carissa for the last two days. A lumbar puncture (spinal tap) was the next recommended step. They proceeded with that almost immediately and again Daddy and I were asked to leave her room. When we returned less than an hour later, she was in a deep sleep again. She slept the rest of the evening. We enjoyed seeing her resting peacefully after so many hours of her body jerking uncontrollably and her desperate fight to stay conscious. We do not yet know the results of the spinal tap as we were instructed that the initial results would take several hours and the cultures from the spinal fluid would take several days. The initial results we not ready when we decided that it was time to return "home" to try to get some rest for the night. Carissa's nurse has instructions that she is to call us immediately if anything changes or if Carissa asks for us. Carissa was still in a deep sleep when we left. She tried to open her eyes to look at us, but the need for sleep seemed to win out. Much to our surprise, less than 15 minutes after we left the hospital, Carissa called Mama's cell phone! She was wide awake and had a good long conversation on the phone with Mama and then Daddy. She doesn't remember most of what happened today, which is understandable since she managed to sleep through most of it. Mama filled her in on the events of the day. Carissa seemed somewhat chipper and laughed with Mama about some of the things she couldn't remember from the day, such as some of her sleepy answers to many doctors' questions! She was comfortable with us being "home" for the evening since she knew that the nurses understood we are to be called if Carissa needs us. We're just praying that she'll get a good night's sleep and that she'll remain stable tomorrow. Our main requests for prayer are: 1. That Carissa remains stable. 2. That the doctors will figure out what has caused the terrible "episodes" of disorientation, pain, fever and body tremors. 3. That once the cause is known, that the doctors will design an appropriate treatment plan to address whatever the issue may be (even though symptoms seem to be subsiding) so that it doesn't happen again. 4. For continued rest for Carissa, Mom and Dad. They are completely wiped out after a very physically and emotionally draining couple of days. 5. And as always, for our donor family. It's only been a little over three months since Carissa's transplant. While SO much has happened in that time for us, we know that their loss is still very fresh. We continue to pray that if they do not know the Lord, that He will draw them to himself. I don't think I can begin to express the deep gratitude we hold as a family for the thousands of prayers that we know are being offered on our behalf on a daily basis. Even yesterday, as very few people knew the details of the severity of the episodes Carissa was experiencing, I know that many people were praying for Carissa and our family as they do on a regular basis. We are so blessed to be able to regularly experience the strength that those prayers provide. We can't thank you enough. Monday, June 19 - 11:00 a.m. (Sharon) Carissa's need for prayer is urgent. She is spiking fevers, her blood pressure and pulse have been very high, she has spells that cause her to jerk all over and almost black out, and she has difficulty articulating her thoughts. Numerous "spells" culminated in what appeared to be a grand mal seizure. Carissa is in the TICU and being given Dilantin. Symptoms aren't as forceful, but they continue to occur. Though her "spells" appeared to be seizures, her fevers and back pain indicate that something else is going on, possibly an infection in her central nervous system. Several tests are being performed today. Wayne and Sharon spent the night at the hospital with Carissa. Celeste arrived a few hours ago. We plan to take shifts and will send updates as possible. Please pray for us. Sunday, June 18 - 11:00 a.m. (Wayne) Carissa is still in the hospital and was doing much better up until yesterday afternoon, when she suddenly became disoriented. There was a concern that she had had a ministroke, but a CT scan did not reveal any indication of a stroke. The doctors thought that she might be absorbing too much medicine, now that her body is functioning better, so the plan was to reduce the dosages of her medications, one at a time. At 1:00 a.m. this morning she was feeling much better. However, she just called (10:30 a.m.) to tell us that her head is severely hurting, her body is jerking, etc. Someone is now monitoring and recording all of her reactions. They have scheduled her for an MRI of the brain this morning. Sharon and I are rushing to get over to the hospital. Carissa is frightened. Thursday, June 16, 2006 9:30 p.m. Every day is an opportunity to learn in the transplant world. Today we learned that there are three "conductors" in the circulatory system: arteries, veins, and lymphatic vessels. Lymphatic vessels carry fatty fluids to the lymph nodes. During a transplant, all three have to be cut. Arteries and veins are reattached, but lymphatic vessels are so teeny (thickness of a hair) that there is no way to reconnect them. So, post-transplant, fatty fluid that isn't absorbed by the intestines is pulled into the lymphatic vessels and the vessels empty into the tissue (like a bunch of hoses with the water turned on) and create a pocket of "chylous" (fatty fluid). The tissue may absorb it, but if not, it has to be drained through a pigtail. It is a temporary problem. The lymphatic vessels eventually close themselves off and grow new paths to the lymph nodes. We now understand why the fluid that drained looked like j-tube formula. It was fatty fluid primarily from the j-tube formula. That's why the j-tube feedings were stopped. Once all of the fluid drains, they will restart the feedings and, hopefully, her system will absorb the fluid rather than create a new pocket. That explains why Carissa became increasing distended, her pain increased, and her appetite diminished gradually. It didn't happen overnight. The fluid has been building ever since her transplant. We wonder whether it may also explain the ongoing sporadic fevers. The praise is that all of Carissa's cultures, including blood and chylous, have shown no infection. They are continuing the IV antibiotics to be safe, but Carissa's fever broke after she spike to 103.5° yesterday afternoon. She had no fever today and she is feeling relief now that a lot of the fluid has drained. The Lord is good! Thank you for praying. Wednesday, June 15, 2006 9:30 p.m. Carissa's fever had spiked to 103.5° when I returned to the hospital after picking up a few things for her from "home." They got it down with Roxicet, but set up a cooling blanket in case it is needed overnight. The pigtail has almost stopped draining fluid from her lower abdomen, but there is still a lot of fluid that isn't draining from her side. They may have to place another pigtail. Dr. Kareem thinks j-tube feedings may be contributing to the fluid buildup/infection, so tube feedings have been stopped. Carissa may be able to eat better without the tube feedings, but she is aware of the importance of meeting nutritional needs and it is a little scary not to have that "crutch." She will probably be in the hospital for several days, so it is a safe place for her to make a test run. Please pray that her new organs will successfully handle the challenge of more "real" food. Wednesday, June 15, 2006 5:30 p.m. Carissa was admitted to the hospital this afternoon. A pigtail was placed and within a very few minutes, she had drained a liter of milky substance from her side, and it continues to drain. No wonder she was distended and battling fevers! She will probably begin to feel better quickly. Dr. Kareem decreased Cortef to 50 mg three times a day. He prescribed IV Voriconazole, Vancomycin, and Zosyn. She is having a PICC line placed as I write. With limited veins to access, it may be a challenge. We would appreciate prayer for Natalee, a kidney and pancreas transplant patient, and her daughter, McKenna (ten years old). Natalee's former husband (McKenna's dad) committed suicide on Monday. Thankfully, Natalee and McKenna know Jesus Christ as their personal Savior, and have the hope of seeing him again someday. Wednesday, June 14, 2006 9:30 p.m. We contacted Carissa's transplant coordinator this morning and she plans to take blood cultures again tomorrow. Cultures taken while Carissa was in the hospital were negative. The rash came back with a fever this afternoon, but went away again. However, the fluid buildup Dr. Kareem mentioned prior to releasing her on Monday seems to be getting worse. Carissa wasn't aware of the fluid until Dr. Kareem mentioned it. This afternoon, a large red area has appeared on her side and the redness doesn't diminish like the rash. She also has pain that runs up her rib cage. Carissa will have clinic tomorrow morning at 8:00 a.m. We expect her to be sent to 7W to drain the fluid or to be admitted. At this point, it looks like there is infection, not just fluid. She doesn't look forward to a pigtail (drain). Thomas' family was called in today to make a decision regarding life support. His liver and kidneys are failing, and the doctors are giving no hope. Jessica came through the surgery well, but is in a lot of pain. We pray it is the last surgery she will need for a long time (five within a little over a week). Wednesday, June 14, 2006 8:30 a.m. Carissa's fever broke and rash went away before she went to sleep last night. It didn't return. Her temperature is 99.2° this morning. Tuesday, June 13, 2006 10:30 p.m. Three months ago today Carissa received her transplant. We're still amazed at how well her body responded. We truly believe it's a miracle. Unfortunately, Cortef didn't totally do the trick. Carissa had a fever up to 102° last night and it is going up again tonight. She is also breaking out in a rash, but isn't having difficulty breathing. Because so many tests have been run the past few days, Carissa wants to wait until tomorrow morning before calling her transplant coordinator. She knows her body and its reactions, so I trust her decision. If things get worse, we won't play around. Monday, June 12, 2006 10:30 p.m. Cortef did the trick! Carissa's fever went up overnight in the hospital, but it stayed around 99° all day. The CT scan of her abdomen and pelvis was fine, and so was her biopsy. There is a small amount of fluid buildup that Dr. Kareem considered draining through a pigtail, but he finally concluded, "Costa is going to give you phosphorous (Carissa was receiving IV phosphorous at the time), Ashook is going to give you potassium, get out of here before we make you sick!" We gladly left as quickly as possible. Carissa was happy to get back to her own room. Sunday, June 11, 2006 10:30 p.m. Carissa was admitted to Montefiore Hospital this afternoon for observation. Her fever spiked to 102.8° this morning and to 102.3° this afternoon in spite of Tylenol every six hours and a few doses of Roxicet, on top of it. She has some pain in her back and abdomen, and she has little appetite. Her color is still good. Dr. Kareem increased Carissa's dose of Cortef (steroid) to 50 milligrams three times a day and ordered a CT scan of her abdomen and pelvis. Tomorrow morning they will take another biopsy. He still thinks the fever may be caused by her being immune suppressed, but is making sure that nothing is being missed. Jessica, another multivisceral transplant patient (in her 20's) and friend that lives at the McKee Family House, is in the room next to Carissa's in the hospital. She underwent a thirteen hour long surgery a week ago to remove adhesions that had built up within her new organs. She has had to be opened again twice since then, and faces surgery again tomorrow. She's amazingly resilient, but we would appreciate prayer for her. Saturday, June 10, 2006 8:00 p.m. Yesterday began wonderfully. We went to 7W for lab work and were allowed to leave by 9:00 a.m. It was a beautiful day, and we were already up and out, so Carissa wanted to go Monroeville to shop for a few clothes since pre-transplant jeans, etc., are snug around her waist now that she has organs. The shop of choice was Goodwill since we don't know how long she will be able to wear the size that fits now. We took our time searching through the racks. Carissa went into the dressing room with a stack of clothes on top of her walker that was almost as tall as she was. She checked out a while later with jeans, jogging pants, shorts, and tee shirts (two or three of each) that looked almost new and paid a whopping $25 for them all. She was all smiles. As we were on our way home, Carissa felt like her fever was going up. Because the fever persisted and Carissa had more difficulty breathing after she ate, we went back to 7W for a CT scan of her chest. It was clear, so we were allowed to leave. Because her fever continued to go up in spite of Tylenol, we were instructed to go to 7W again this morning for blood cultures and a CT scan of her sinuses. The CT scan of her sinuses was clear, so she was told to continue to taking Tylenol and to return on Monday morning for another biopsy before the regular clinic visit. Carissa has felt continually worse today. Her fever is persisting, she feels achy, and her appetite is down. Her belly is extremely distended which makes it difficult for her to eat and she feels a little dehydrated although she is doing her best to consume fluids. We're thankful that you are lifting Carissa's name before the Lord. Thursday, June 8, 2006 8:30 p.m. Carissa is having problems breathing after eating and it is caused by gastric reflux. She is allergic to Reglan which is the most effective drug. She is taking Prevacid, but it isn't as effective as it needs to be. We plan to reemphasize it tomorrow when we go to 7W for lab work. Carissa sleeps in a hospital bed because her head needs to be elevated when she sleeps. Gastric reflux can cause aspiration pneumonia if food is refluxed into the lungs. Carissa is following all of the recommended preventive measures. Wednesday, June 7, 2006 8:00 p.m. Carissa had a biopsy and lab work this morning at 7 West followed by physical therapy, but she also had clinic today. There were twenty-seven post transplant patients scheduled for clinic tomorrow, so they rescheduled a few of us. We're happy to avoid the long clinic day! Carissa has taken Voriconazole (VFend) since her transplant to prevent virus infections. Dr. Kareem discontinued it today. VFend prevents the elimination of Prograf, so a higher level of Prograf (although a low dose) is maintained in a patient's system as long as Voriconazole is being taken. Carissa will increase her dose of Prograf tomorrow (since VFend was discontinued) and return for lab work on Friday morning for a Prograf level to determine the dose she needs to take. There is a good possibility we will need to return to 7W again this weekend to check the level again. Prograf (FK506) is a steroid that is used for antirejection and is essential for transplant patients. Significantly more transplants are successful today because of this drug. However, it is crucial that the level be monitored closely. We would appreciate your continuing to pray for our friend Thomas. He underwent surgery today to clean out the portion of his transplanted heart that is not working in hopes of repairing it. We have not had an update this evening. His liver has been getting worse (needs a liver transplant, as well) and his kidneys have begun to fail. Although his eyes are open, we don't know what he understands. Monday, June 5, 2006 10:30 p.m. Carissa was in clinic by 8:00 a.m., in physical therapy by 9:30 a.m., and we were able to leave the hospital by noon. The only change in her meds was a slight increase in Prograf. That's a good day! In just a few days it will have been three months since Carissa's transplant. The thought is sinking in and making Carissa excited. She mentioned today that some people have their ostomy reversed after six months. That's a little early, but it could happen. The light at the end of the tunnel is looking brighter! That's not to say that everything is working perfectly yet. We were assured today that it is still normal for chunks of chicken or beef or other food to come out undigested. It takes more time than we imagine for the gut to learn to function again. Carissa played with her Game Cube for a few minutes today. She has laid limply for so long and it so encouraging to see her having interest in doing something. Thank you, Lord! Saturday, June 3, 2006 9:00 p.m. The sky was so blue and beautiful this morning! It was so inviting that Carissa wanted to get out for a while. It's encouraging to see her energy level increasing little by little. Today our family is all together in Chattanooga, Tennessee for the marriage of a nephew, Nathaniel. His parents, Ron and Renee, moved to Chattanooga before their children were born, and Carissa was about two years old. Our families enjoyed being together often, including attending the same church and school, so many memories have been stirred today. We're so proud of and happy for Nathaniel and his bride, Gabrielle. Carissa and I would have loved to be there, but it is too far away for it to be safe right now. Friday, June 2, 2006 9:00 p.m. "Blue Lightning" Jeep, "Blue Lightning, Jr." walker, and now..."Blue Lightning" hair color. Carissa has talked about dyeing her hair blue for the fun of it for several years but, today, our dear friend, Karen, made it a reality. Of course, Karen is a forerunner in that she dyed her hair pink a week before transplant, and it wasn't the first time. It has something to do with the artist in them, they say, and friends smiles make it fun. Carissa just has blue highlights and it looks pretty cool. Tonight small bowel transplant patients attended a dinner in their honor during a UPMC small bowel symposium at the Sheraton Inn at Station Square. Children's Hospital planned the dinner, and children as well as adult transplant patients attended. We were happy to see Karis and her aunt, Jan, who is keeping Karis company while her mom is in Brazil for a month. Karis looks wonderful and the benefits of physical therapy are apparent. We're so happy for her. Thursday, June 1, 2006 5:00 p.m. It was a long day in clinic, but all of the news was good. Nothing is growing in Carissa's blood cultures, which makes sense, considering the inconsistencies of her fevers. We can cut the two doses of potassium a day in half. Whoopee! That means she will only have two of those huge pills a day to swallow. The only project for the week, other than physical therapy, is Carissa's protein level (more creative egg recipes being researched...). Wednesday, May 31, 2006 8:00 p.m. We got away from 7 West this morning (following bloodwork and a biopsy) soon enough to eat breakfast at the Coffee Shop before physical therapy. Carissa enjoyed her pancake! Then on to physical therapy... Carissa began to use lightweight weights today. Progress is slow, but she is working at it. We left the hospital before noon! We were celebrating when Carissa checked her temperature and discovered that her fever was up to 101.4°. Back to 7 West for blood cultures... Thankfully, Carissa's fever will go down on its own, at times, without Tylenol. She doesn't "feel" like she has an infection, so it is probably still a reaction to CamPath. We enjoyed seeing some of our friends from the Family House at the hospital today. Fred and Frank, one of the first twins to undergo a kidney transplant forty-three years ago (Fred—donor, Frank—recipient), were sitting outside of the hospital and we enjoyed visiting with them for a while. Frank underwent a liver transplant about three months ago and is looking great. Now he is waiting for his second kidney transplant. We would appreciate prayer for Thomas, who arrived at the Family House in January 2005 and finally received a heart transplant last week. Unfortunately, his new heart sprang leaks and he is now on life support, waiting for another heart. Thomas was a "gift" during our stay at the McKee House. His gracious spirit was enjoyed by all, as well as his cooking! I (Sharon) enjoyed discovering that my Spanish roots weren't forgotten. Our hearts are broken for him and his family. Tuesday, May 30, 2006 10:00 p.m. A wonderful weekend! It was great to be home with our family. Carissa enjoyed visiting Faith and her family, and seeing their new home and neighborhood. Kyrie, Davis, and Katrina were excited to show us their new rooms and the outdoor playhouse they built with their daddy, and showing us their bike riding skills. We're so happy they have such a perfect place to play. Celeste and John came to visit us several times and Carissa enjoyed chatting with her younger sister. John introduced us to a new game, "Toss the Pigs" (I think that's the name). We learned what a "trotter," a "snouter," a "razerback," a "jawler," a "sider" and, worst of all, a "pig out" is. It brought a lot of laughs! Our family was together for a Memorial Day cookout last evening. Carissa joined us at the table for the first time in years. She enjoyed the potato salad, some chips and dip, and strawberries, and is looking forward to eating a home grilled hamburger before long. We loved having her with us talking and laughing like old times. Carissa spiked a fever of 102.7° this morning so we (Sharon and Carissa) hightailed it back to Pittsburgh. She only took Tylenol once and her fever stayed down to around 99° until tonight. It went back up to 100.3°. It's possible that it is just a reaction to CamPath, but we know they will order blood cultures tomorrow morning (6:30 a.m.) when Carissa has her biopsy. Thursday, May 25, 2006 2:00 p.m. All cultures are negative and all blood work results are good! Carissa is free to go home for the weekend. We need to return on Tuesday for her biopsy on Wednesday. If you don't hear from us in the meantime, we're having a good time! (Watch out for a Blue Lightening Jeep...) Wednesday, May 24, 2006 10:00 p.m. Carissa has new wheels and they're blue! Not lapis blue, but royal blue. They're cool! It's a walker, but has four wheels, brakes, a basket, and a seat. She feels so much steadier when she walks and it helps so much to have a way to carry her Game Boy, drink, blanket, or whatever else she wants at the moment. She hasn't said whether she is going to name her wheels yet, but her dad and mom think "Blue Lightning, Junior" might be appropriate. Physical therapy and the early mornings wipe Carissa out. The schedule is better this week because she was able to schedule PT the same mornings as clinic and her biopsy, which helps, but she has to push herself to keep going. Her blood pressure is finally dropping, as well, so her body wants to catch up on lost sleep. We plan to leave for Harrisburg after clinic and PT tomorrow, Lord willing. Carissa hasn't had any more fevers over 100°, so we are hopeful. Tuesday, May 23, 2006 9:30 p.m. Carissa will have a biopsy and blood work tomorrow morning at 6:30 a.m. We hope the results are good or can be corrected by Thursday morning so we can head east! Spunky has brightened Carissa's days. She takes him out of his cage for a while every day. Sometimes he will snuggle, but tonight he lived up to his name. He makes Carissa laugh. By the way, Spunky will travel back to Harrisburg with us for the weekend. Carissa was afraid something might happen that would force us to stay in Pittsburgh and she couldn't stand to wait any longer to see her buddy. Monday, May 22, 2006 10:30 p.m. We saw a picture of Carissa's old liver today! Dr. Soltice, transplant surgeon from Children's Hospital, saw Carissa in clinic this morning. They have just started putting a digital image of each post-transplant patient's liver in their database (most records are computer based now). He opened the image of Carissa's liver so we could see it. It was twice as big as a normal liver and it was easy to see the fatty tissue damage caused by TPN. Carissa's blood work was perfect today. There were no changes to her medications. Unfortunately, Carissa spiked a fever this morning. It was 101.3°, the highest we have seen since she got out of the hospital. They took more blood cultures (those from this weekend are negative). They are also testing for C-Diff, which is at the top of the list of infections the doctors watch for. She hasn't had a fever since this morning, so we are hoping it is still just a reaction to Cam Path. Carissa will have a biopsy on Wednesday morning, and clinic and physical therapy on Thursday morning. If all goes well, we plan to leave for Harrisburg Thursday afternoon for a long weekend. It will be the first time for Carissa to be home in a year. We were home for Memorial Day in 2005. We can't count our chickens before they hatch, but Lord willing... Sunday, May 21, 2006 9:15 p.m. (Wayne) It's wonderful to see Carissa walking much better and eating more than when I was here two weeks ago. Spunky (Carissa's guinea pig) is becoming comfortable with his new home. He seems to be enjoying all of the attention that he's getting. Poor little fellow has been lonely for a year and a half. Tomorrow is a clinic day and physical therapy day for Carissa. I'll be leaving tomorrow morning for a ministry trip to Indiana. Hopefully, when I come back through Pittsburgh, Thursday or Friday, Sharon and Carissa will already be home--our real HOME in the Harrisburg area. Although it will only be for a few days, we look forward to being a family together again at home. "Thanks!" to all of our ABWE home office family who raised more than $700 through a bake sale last week for Carissa's expenses. Saturday, May 20, 2006 10:00 p.m. Wayne came to visit this afternoon and brought Carissa's guinea pig, Spunky, with him. When Spunky was put into Carissa's arms, he snuggled and didn't move a muscle for 30 minutes or more. He knew who was holding him. Carissa's delighted to have her buddy nearby. The 8:00 a.m. 7W visit lasted till two or after this afternoon. Dr. Costa made several adjustments to Carissa's meds and she spiked the first fever she has had in several days, so he took blood cultures to be safe. We'll return to clinic on Monday for more blood work. We counted Carissa's meds tonight and she is taking twenty eight different drugs. She is taking four of one four times a day, two of another three times a day, etc., so the number of tablets add up. It will be wonderful when they can begin to eliminate some, but these docs know what they are doing. Friday, May 19, 2006 10:00 p.m. "Beep, beep, beep...swallow, swallow, swallow..." Carissa says that her full time job is to take pills. She has a watch that can be set for up to twelve alarms (thanks to Dan & Ginny). She has set it for the six times a day she needs to take meds. The watch seems to go off far too often, but she dutifully takes the next doses of medicine from her pillbox tower that is organized by the six dosing periods. Carissa is enjoying being at the Residence Inn. She is enjoying having a couch to sit on when she feels like it rather than always being in bed. She also loves having a refrigerator and microwave across the room for frequent snacking. Tomorrow morning we will go to 7W by 8:00 a.m. for blood work and will stay until Dr. Costa sees the results. He wants to stay on top of Carissa's potassium level, and it will be good for him to check her heart rate and pulse now that she has started taking Lopressor. She had a had time sleeping last night because of her heart racing, so we hope she will sleep better tonight. Thursday, May 18, 2006 9:00 p.m. Dr. Costa was pleased with Carissa's blood work results today. Her liver counts are coming down and her blood cell count is going up. Her electrolytes were in the normal range. Yeah!!! Carissa's blood pressure has almost doubled since transplant. It was typically between 70-90 / 50-70. She was admitted two days before her transplant because her blood pressure was 70/40. Now, she is having the opposite problem. It has been running around 150+ / 110+, so she will begin taking Lopressor tomorrow. It is a common posttransplant issue that corrects itself in time, according to what we have heard. Dr. Kareem told Gretchen's mom that as they were performing Carissa's transplant, they watched the blood spread throughout her body and her complexion change. What an amazing experience it must be to build a totally new circulatory system, which they did, and watch life return to a dying body. Our hearts are filled with gratitude to the doctors for their passion to succeed and skill in handiwork, to the donor family for their willingness to give life in the midst of great loss, and to the Lord, who oversaw it all. Wednesday, May 17, 2006 7:00 p.m. Yes, Carissa's organs are are absorbing potassium!! Today her level was 5.1 and going up, so she was given a dose of Florinef to lower her potassium. It will take some time to learn to balance the level, but it's great to have this problem. The nurses on 7W enjoyed watching Carissa eat a bagel egg sandwich this morning. They cheered her on. She didn't finish the bagel, but ate most of the egg. Carissa had physical therapy today. It's wonderful to be working with therapists that have experience with transplant patients. Although Carissa doesn't feel that she is doing well, they understand what a multivisceral patient (with abdominal muscles that have not been closed) can and cannot do. The therapist said that Carissa will need therapy for as long as we are in Pittsburgh and they expect her to need a minimum of two months. We left with a prescription for a walker with wheels. The therapist feels that Carissa is too unstable to walk safely (even in the room), and it will enable her to walk more often and independently. Tuesday, May 16, 2006 10:30 p.m. Tomorrow morning we will arrive at 7 West by 6:30 a.m. for a biopsy of Carissa's small intestine. Biopsies are taken weekly for several weeks to check for rejection. So far, Carissa's biopsies have shown no rejection. Praise the Lord! Patients are called from the 7W waiting room into patient rooms with beds (Strykers) or recliners for four patients. Blood work is taken, a copy of the updated medicine list is made, and the patient is rolled into to a room with the necessary equipment for a biopsy. Biopsies of the small intestine are easy to take through the stoma until the ileostomy is reversed (9-12 months after transplant). In order for results to be available the same day, biopsies are taken before 9 a.m. After biopsies have been taken, patients wait in the patient's room for blood work results (takes 2 to 3 hours). Someone from the transplant team reviews the blood work and determines whether any special instructions are necessary. If there are no special instructions, the patient can leave. However, it is common for patients to need something intravenously: fluids, potassium, phosphorous, magnesium, antibiotics, etc. IVs run slowly, so a 7W visit can last several hours. Since patients can't eat before biopsies and the day can be long, caretakers typically make trips to the Coffee Shop or cafeteria for carryout breakfasts or lunches. Tomorrow Carissa will be having physical therapy at 10:30 a.m., so we will leave 7W and may need to return later. Monday, May 15, 2006 10:30 p.m. Once again, blood work indicates that Carissa's new organs are absorbing nutrients properly. There were clear indications last week and, today, it was reconfirmed. That one simple fact has massive implications. Carissa's digestive track hasn't processed potassium properly in many years. Although she was given double and triple doses of potassium through her j-tube, her potassium level would inevitably drop dangerously low, placing her at high risk for cardiac arrest. Tenormin protected Carissa's heart as we raced repeatedly (approximately every two months) to the Hershey Medical Center Emergency Room. The only way her body would absorb potassium was through IV pushes. But now, if her potassium drops too low, she is able to take potassium tablets and know that it will be absorbed. Emergency room visits last a minimum of five hours, if all goes well. Perhaps that gives you an idea of how this single benefit will improve Carissa's quality of life. Today was the first of those days. Her potassium dropped to 2.9 for reasons that we understand. Rather than going to 7W, Carissa was sent home to take 80 mgl of potassium. They are huge pills, but they are nothing compared to sitting in an emergency room! Thank you, Lord! Sunday, May 14, 2006 10:00 p.m. Mondays and Thursdays are clinic days. Here's a summary of what happens: All patients arrive at the clinic by 8:00 a.m. Blood is drawn for testing soon after they arrive. Once blood is drawn, the transplant coordinator takes each patient's vital, reviews medicine being taken, and makes note of any questions or issues to be addressed by the doctor. The patient may also need to meet with Laura, the dietician, who oversees nutrition, including TPN. The patient returns to the waiting room and waits for Dr. Kareem, Dr. Costa, or Dr. Bond to arrive. Blood work results are needed before meeting with the doctors. Patients are allowed to leave long enough to eat breakfast because it may be a two hour wait. Patients are seen on a first-come first-serve basis or at the doctor's discretion. Sometimes the patient needs to see someone else on the transplant team (social worker, psychiatrist--oversees medications and their interactions, gastroenterologist, etc.) in the afternoon. Factor into the schedule the possibility of emergency surgery or even a transplant. Because we are in the waiting room for several hours each clinic day, patients get to know each other quite well. Maria's mother mentioned this past week that she enjoys clinic days because we share and encourage each other. We catch up on how each other is doing and pray for each other throughout the transplant process. We become a "transplant family" for life. Saturday, May 13, 2006 10:00 p.m. This afternoon Carissa felt like getting out of "Hotel Transplant" for a while. We started with no plans, but ended up driving to the mall in Monroeville for a little while. We had forgotten that it was Mother's Day weekend, but the traffic soon reminded us! On the way home, we stopped at Taco Bell. It was the first time Carissa has eaten at Taco Bell since she got sick twelve years ago. She ordered a "Meximelt" and ate it all, but over a three hour time span. She enjoyed it! After a soak in the whirlpool, we're ready for bed. It's been a good day. Friday, May 12, 2006 10:00 p.m. Carissa signed up for physical therapy yesterday. She will be having therapy three times a week, so it will be busier. We are glad that she had this week to rest and adjust to being out of the hospital before the next step begins. Decisions, decisions, decisions... Carissa's new organs are still waking up, so she is on tube feedings overnight until she is able to eat enough "real food" during the day. It sounds simple, but it is a balancing act. Tube feedings can be too filling. Eventually tube feedings will be discontinued so that she will have a better appetite during the day. Eating is what she wants and enjoys. Having adequate nutrition in the meantime is important. Thursday, May 11, 2006 10:00 p.m. Dr. Costa was beaming today as he looked over Carissa's blood work results for the first time in two or three weeks. "It's perfect! You are going to have a very good life." We wish we understood all that he does. The results don't appear to be perfect to us, but he knows what is normal at this stage in the transplant process. The good blood work results indicate that Carissa's new organs are absorbing the nutrients her body needs. Her potassium level was up to 4.5 today, up from 3.5 on Monday, and the extra was absorbed by her digestive track, not through an IV infusion. The fears that lingered in our minds when Dr. Kareem removed the last central line, the access for the many infusions and transfusions she received daily prior to discharge, may be unfounded. We know it is still early, but...we dare to hope and praise the Lord. Wednesday, May 10, 2006 10:00 p.m. Another good report! Carissa's blood work was perfect today. Georgetta (Posttransplant Coordinator) decided that Carissa must have needed to go home. Of course, there is tomorrow... We are scheduled to be at the clinic by 8:00 a.m. Carissa is building courage to try more things to eat. Today she ate a sausage and biscuit from McDonalds, and a half of a small (5" or so...) personal pan pizza. They were eaten in small portions and spread out through the day, but were tolerated fairly well by her tummy and thoroughly enjoyed. Tuesday, May 9, 2006 10:00 p.m. Carissa has rested in our room today. Tomorrow we will need to be at 7W by 6:30 a.m., so it was wise. We enjoyed a visit from Lin and Gary this evening. They may be able to go home on Thursday to stay for a few months. They were home for five weeks at Christmas, but have been here as long as we have otherwise. We're happy for them, but will miss them at "Hotel Transplant." Monday, May 8, 2006 10:00 p.m. It was a wonderful day! We were at the post-transplant clinic by eight this morning and it felt like old times. We were finally in clinic with several of our 2005 pre-transplant friends. It was a wonderful day for more than one reason. Once Carissa's blood was drawn and her transplant coordinator (Georgetta) had completed a basic assessment, Carissa was allowed to leave and return three hours later. Carissa was able to rest in our room for a while rather than having to sit in the clinic. Thanks, Georgetta! Dr. Kareem adjusted three of Carissa's medicines, but we didn't have to go to 7 West for any IVs. And...we have tomorrow off! We don't have to return until 6:30 on Wednesday morning. Maybe the eight long weeks in the hospital are paying off. Carissa walked so much today. She was still unsteady, but persistent. On top of walking from our room to the car and back twice, Carissa decided to go into CVS on our way home to find something different to eat. Then tonight, she decided she wanted to dangle her feet in the whirlpool. It was a huge day of exercise compared to her days in the hospital, but was so good for her. We had such a wonderful day, but we heard news that broke our hearts, as well. Pam, one of the first post-transplant patients that we became good friends with at the Family House died suddenly on Saturday. She had been released to return home to Texas, so her death was totally unexpected. Please pray for her family. Sunday, May 7, 2006 10:00 p.m. A shower after over seventeen months! With no IV line to get infected, Carissa relished the experience. She is also relishing our beautiful new "home" and the convenience of the kitchen with "real food." The nurses on 12 North were wonderful in preparing us for this great venture. We left the hospital with a huge box of medicine (twenty-three containers), all clearly labeled, and a schedule to guide us. We haven't counted the number of pills yet, but just swallowing them all keeps Carissa busy. I sit here in wonder. Carissa is "home" with rosy cheeks nibbling on whatever appeals to her. Her complexion is so clear and healthy looking. The only tube she is connected to is a j-tube. And I'm so thankful to see her in our new "home." It boosted her spirits the moment she arrived. The next couple of weeks will be rigorous. We will be in clinic by eight a.m. on Mondays and Thursdays, and at 7 West by 6:30 a.m. most of the other mornings. Days will be long and nights short. We enjoyed a visit from Randy and Bonita Yinger this afternoon. It was great to see them. We also enjoyed the cards and notes from friends in Harrisburg that they brought with them. We are so blessed! Sunday, May 7, 2006 3:15 p.m. (Wayne) Carissa's "home" - at the Residence Inn, about a mile from the hospital. She's thrilled to finally be out of the hospital, after more than eight weeks. Sharon will provide more details later this evening. Saturday, May 6, 2006 10:00 p.m. Carissa's release from the hospital was postponed until tomorrow. Carissa spiked a fever this morning and she needed a blood transfusion. Dr. Kareem agreed to let Carissa leave today under the condition that she go to 7 West tomorrow morning for the transfusion. She opted to stay in the hospital one more day. Because of Carissa's history of line infections, Dr. Kareem choose to remove her new central line after the blood transfusion today. The tip was sent for testing. Carissa continues to be weak and exhausted. We hope that coming "home" will help her rest more soundly at night and feel more energetic during the day. Please pray with us that the fevers will be controllable, and that they will go away soon. Friday, May 5, 2006 10:00 p.m. Cards, games, clothing, personal items, and food have almost all been moved to the Residence Inn. Carissa’s hospital room has two beautiful silk flower arrangements decorating it, but that’s all. A change of clothes hangs ready for Carissa’s trip “home.” Our friend Gary dropped by Carissa’s room this afternoon and mentioned that he had ongoing fevers that would spike, just like Carissa’s, for a few months. Carissa and Gary were transplanted uniquely. They are the only two multivisceral transplants so far that have their spleens. Gary is doing great now, a year after his transplant. There is hope! Today is Karis's birthday, a birthday that she would not have lived to see if it weren't for her transplant. We praise the Lord for His healing hand, and thank the donor family for their gift of life. Thursday, May 4, 2006 11:00 p.m. Dr. Bond has ordered a test tomorrow to determine whether reactions to Voriconazole is causing Carissa's fever. It spiked up to 103.5° last night. Naturally, we are a little uneasy about bringing her to the Residence Inn with the potential of that type of a fever. However the "nurse" to patient ratio will be one to one, so she will be given Tylenol much more quickly than in the hospital. We will make an all out effort to stay on top of it, but she is not allowed to take Tylenol until her fever reaches 100.3°. Tylenol is extremely hard on the liver and Advil is even worse. Dr. Kareem came by this evening and is anxious to get her out of the hospital. He is recommending that the IV line placed on Monday be removed because of Carissa's history of line infections. It's a big decision because the IJ vein will not be usable for another central line and Carissa has no other access other than in her femur. We'll appreciate your prayers regarding the decision. Plans to discharge Carissa are being postponed until Saturday. Wednesday, May 3, 2006 11:00 p.m. Tomorrow will be a day of training. We don't expect a lot of new information since Carissa was on most of the medicines before transplant, and we have handled IVs as well as j-tube feedings at home. But there are new issues to manage that will require focused learning. For example, we need to be aware of how much potassium, magnesium, phosphorous, etc. are in specific foods so that we can attempt to balance Carissa's electrolytes. Blood work will be taken several times a week (possibly daily at first) to keep us on track. Tuesday, May 2, 2006 10:00 p.m. Carissa can hardly believe that it is May. She spent the whole month of April in the hospital, so she hasn't experienced the warm weather or seen flowers in full bloom. She's looking forward to a Jeep ride before long. It continues to sound like Carissa will be released or she may be sent to inpatient rehab for a few days first. Pancreatitis and the recent fevers have left her weak. She manages to go to the bathroom alone, but depends on steady support if she walks further. Wayne is still with us! He's attempting to win the war against jet lag (twelve hour time difference in the Philippines), but it isn't easy. We are enjoying his company. Monday, May 1, 2006 10:00 p.m. (Sharon) Cards are arriving almost daily to the Residence Inn. Thank you for making note of our new address. Here it is again, in case you missed it: Residence Inn Room # 712 I started to take the cards down in Carissa's hospital room today since plans being made to release her later this week, if all goes well. I mentioned it to Carissa and she quickly let me know that she didn't want me to take them down. If you have ever wondered whether your cards are appreciated, now you know. Monday, May 1, 2006 12:00 Noon (Sharon) Opps! Wayne came back from the Philippines on Saturday and came to visit us last evening, so I forgot to write an update yesterday. Carissa reacts to many IV antibiotics and minerals, but especially magnesium. She is given IV Benadryl as a pre-medication, but half way through the dose, she spikes a fever and gets a rash, so they have to give her Benadryl again. Once her new organs learn to function normally, she won't need IV minerals and her fevers should diminish significantly. When she isn't reacting to IVs, her temperature is staying under one hundred degrees. Carissa is encouraged. Doctors are now saying that Carissa will be released from the hospital later this week. The coordinator is making outpatient arrangements for Carissa, including physical therapy. Physical therapy is required, but Carissa feels the need for it, so she will be motivated. We are thankful that it will be provided.
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Life on a Feeding Tube |
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