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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 Tuesday, August 29 - 11:00 a.m. We're headed home! They increased Carissa's dose of Cytovene, started her on Flagel, and took sixteen vials of blood today. No MRI was ordered so we were released to go home. Yeah! Monday, August 28 - 8:00 p.m. (Sharon here) Carissa is back in Pittsburgh for clinic today. She had no more fevers and felt well most of last week., but her liver counts were elevated today. She had an ultrasound this afternoon and could possibly be sent for an MRI tomorrow. She will have a biopsy tomorrow morning followed by more blood work. We'll see what happens then. Hopefully we will be able to go home... Carissa has called me (Sharon) at work this past week and offered to help with supper. It's amazing to walk through the door and find supper underway. She's worked on several projects in her living area at home, as well, and has enjoyed going to church the past several weeks. It's thrilling to watch her grow stronger—physically, mentally, emotionally, and spiritually! Friday, August 18 - 9:00 p.m. Carissa woke up with a high fever this morning, but we are thankful to say that it broke early this afternoon. We spent the day in 7W (transplant service center), but were able to leave after Carissa received a unit of blood, an injection of Aeronesp (to stimulate her immune system), and an infusion of Hydrocortizone. Dr. Kareem's conclusion is that the fever was caused by her immune system rather than an infection, though numerous tests were taken to be sure. Lord willing, we will go back to Harrisburg tomorrow. Wayne continues to do well, though his body gets tired and reminds him that he is still recovering from surgery. He's getting plenty of sleep and is limiting his work as much as possible. Thursday, August 17 - 9:00 p.m. Wayne is making great progress in his recovery. He went to work for several hours on Wednesday (14th day) and said that he felt great most of the time. He is recovering much better at home where he can work on projects that are enjoyable, but not demanding. Carissa had been having some dizzy spells, but nothing major until yesterday. The dizzy spells lasted longer and she felt like she might pass out. When we contacted Kareem regarding Carissa's symptoms, he asked to see her. So, here we (Carissa and Sharon) are in Pittsburgh once again. Today Carissa is running a fever. Dr. Kareem ordered blood cultures, a biopsy, and raised her level of Cortef to 50 milligrams three times a day. Carissa has an ulcer just below her stoma that has continued to enlarge. Dr. Bond is confident the cultures from the ulcer will be positive, but we don't know whether that may be the source of the fever. We hope to go home tomorrow, but have been told not to leave until the doctors are confident they have all of the information they need. We'll have to wait and see... We will continue to make trips back to Pittsburgh, but hopefully the trips will become less frequent. Thank you again for making it possible for us to stay at the Residence Inn. Monday, August 14 - 8:30 p.m. Wayne here. We're home and it feels great! John & Celeste, Ben & Faith, and the grandkids came over to help Sharon unload the car and to re-situate us here at home. Once we got on the turnpike I was able to drive the remainder of the way home. It was a lot easier than watching four hours of television. Sunday, August 13 - 10:00 p.m. Wayne here. I was able to attend church this morning. That was a milestone in my recovery, as well as a blessing. We plan to go home tomorrow. Sharon is trying to pack 20 months of things that have accumulated here. She's been sending some things home for the past few weeks, but there is plenty more. Some of it will have to be stored here temporarily until Carissa returns next week for a biopsy. Karis, her mom, and her sister came by tonight to say, "Goodbye." After an extended transplant-related hiatus from student life at Notre Dame, Karis will be a college student there once again this fall. Friday, August 11 - 9:30 p.m. Wayne is staple free! His incision is healing well, but he was advised to limit his activities for the next six to eight weeks. He needs to avoid exerting himself physically, including bending over to pick something up or lifting a heavy object. Overexertion could cause fluid to leak in his brain and result in serious complications. The doctor's perspective regarding Wayne's surgery was so positive that our expectations have been unrealistic. Wayne commented tonight that his body doesn't have a speed slow enough for this rate, so it is huge adjustment for him. "Mentally" it is time to move on to the next project, but he is having difficulty focusing for very long. His brain and body need more rest. Rest is boring... Thursday, August 10 - 8:30 p.m. Wayne continues to do well as he recovers from surgery. He still needs a lot of rest, but is gaining strength physically as he walks daily. His vision is perfect except for peripheral vision from his left eye due to swelling around his left temple. That is where a quarter size hole was drilled to remove the tumor, so it will take a little longer to heal. Wayne is finding that he is easily drained mentally, so his ability to respond to email is limited. Thank you for continuing to pray. Carissa continues to enjoy being home. We're so happy for her. Tuesday, August 8 - 8:30 p.m. (Sharon) Wayne and I were surprised to see an empty waiting room when we arrived at clinic this morning. Typically it is overflowing with people. We enjoyed the promptness of the assessment and the relaxed visit with Dr. Kassam. The staples weren't removed from Wayne's incision after all. The incision is healing nicely, but they typically leave the staples in for 10-14 days. Dr. Kassam told Wayne to schedule an appointment to have them removed on Friday. We had a good day! The doctor's appointment was Wayne's first outing and we were pleased to discover that his sense of stability is much improved now that his eye is opening almost normally. We enjoyed the beautiful weather (high of 78°) this evening while sitting in Schenley Park eating hot dogs and watching college students relaxing in the park—reading, chatting, playing ball, or throwing freebies. Wayne was in his element with the Carnegie Library on his left and the Hilman Library on his right, and college students all around. We've talked to Carissa daily and it is so good to hear that she is doing well on her own. She is handling her many doses of medicine without a problem and her sisters have helped her out when needed. It's so encouraging! Monday, August 7 - 8:15 p.m. Wayne here: My left eye is opening much better. I was able to do my Bible reading today! Tomorrow is clinic day and the staples will be removed. Sunday, August 6 - 8:30 p.m. Wayne here. My recovery continues to progress well, but slowly. My left eye is beginning to open enough for me to see out of both eyes, with some difficulty. The good news is that I have no double vision; my vision is crisp and clear when I do open the left eye all of the way. The "double vision" issue was one of the main concerns, due to the location of the tumor. I'm still unsteady on my feet and quite weak. Most of all, I'm BORED. I've discovered that I'm no couch potato! I'm trying to walk enough every day to build up the strength that I need. Sharon's doing a great job as a nurse! Carissa is at home in Harrisburg by herself. She's doing very well. Her sisters are near her in case she needs something. Friday, August 4 - 3:30 p.m. Wayne here, typing again.
I am now back at the Residence
Inn. My left eye is swollen shut...just what Dr. Kassam
predicted. Otherwise, I am feeling pretty good. I'm walking
around, carefully, on my own. I have virtually no pain and have
had very little the whole time. I've probably taken only about
6 or 8 Tylenols and none of those was really necessary.
Dr. Kassam came to my hospital room
last night to tell me that the surgery was very successful and
that the tumor was benign. He said that the post-op MRI looked
very good. I passed my physical therapy tests today...so here I
am under the care of Nurse Sharon.
I've got to be very careful for the
next few weeks and take numerous medications to fight strokes,
infections, and seizures...which they do not expect to happen.
These are just typical precautions.
Thanks for praying!
Wayne
Thursday, August 3 - 10:30 p.m. (Celeste) Dad had a pretty good day today. He's tired, as is to be expected, and it will take some time for him to regain his strength, but he looks good. The double vision he was experiencing last night seems to have diminished significantly. So that's is a significant praise! He was able to watch a little television and read a little bit of the newspaper today. His eye is still quite swollen and sore, so it's tiring for him to do too much of those things at one time. Dad and I greatly enjoyed a visit today from Bill McGhee. Bill is a friend of Dad's from many years ago when we were in Chattanooga. On Monday evening, Dad had received a call from Bill. Little did we know all of this time that Bill lives in the area and works at Children's Hospital of Pittsburgh (where Karis Kornfield has been treated and received her transplant). He works in the pharmaceutical area and is very knowledgeable of the medication challenges faced by post-transplant patients. In fact, he has been involved in Karis' case since before her first transplant in August of 2004. What an interesting and unexpected connection! He was a real blessing and encouragement to Dad and me (Mom and Carissa had come back to the Residence Inn for a nap). We enjoyed talking with him and sharing a time of prayer with him before he left. Carissa and I went to clinic today and the doctors were very pleased with her progress. They said that everything looked "beautiful!" She has been released to return home to Harrisburg for another two weeks! So, Carissa and I will drive home tomorrow afternoon. Since Faith and I live so nearby, we'll be around to help her, if needed. Dad's progress really looks good and there likely won't me too much that is significant enough to report until he's released from the hospital (which will probably be a couple more days). If there is anything significant to pass on, Mom will post an update. Otherwise, please assume that no news is good news! However... we continue to appreciate and ask for your prayers. One of the most significant things that you can pray for now is that Dad will be able to rest soundly. Thanks again for your love and prayers. Wednesday, August 2 - 11:00 p.m. (Celeste) We finally got to see Dad around 7:00 tonight after they had completed the MRI. One of the neurosurgeons stopped by to report that everything looked "beautiful" on the MRI and that as far as he could see, there does not appear to be any residual tumor left on the brain. However, Dr. Kassam (whom we have not spoken with yet as he was still in surgery with other patients when we last heard) will need to evaluate the MRI to finalize that wonderful news! Other wonderful news is that it seems that God has protected Dad from some of the terrifying side effects that were possible as the result of the surgery. Since the tumor was behind his left eye, there was risk of damage to the optic nerve as well as to the left side of his brain. However, he has full movement and control of the right side of his body, he can see out of his left eye, he can open and close his eyes normally, and he was very lucid following the surgery. He is currently experiencing a little bit of double vision, however the doctors do not seem overly concerned about that. Our assumption is that is likely due to the swelling around his eye from the surgery today. Please continue to keep us in your prayers. We just praise the Lord for what appears to be a very successful outcome to this very long day. We want to thank you for your wonderful prayer support. Your prayers today were definitely felt during the long time of waiting and wondering. Wednesday, August 2 - 5:00 p.m. (Celeste) Dad is out of surgery and the initial report sounds good. We don't know a lot of details yet, but we should be able to visit him soon. Currently they are performing an MRI to check to make certain that everything looks as it should. We are told that his vital signs are good at that everything seemed to go well during the surgery. The surgery took considerably longer than we expected as we did not hear until 3:00 that Dad was in recovery. It appears he may have been out of surgery as early as 2:00, but the doctors were consumed with dealing with another patient. As far as we understand, the issue with another patient is what caused Dad's surgery to take so much longer than we expected. While we have not spoken directly with Dr. Kassam yet, two of his assistants have stated that everything went just as planned with no complications. I'll post more later tonight after we've had a chance to see Dad and hopefully talk with Dr. Kassam. We appreciate your continued prayers. Tuesday, August 1 - 9:45 p.m. (Sharon) Pre-op testing took twelve hours today at Presbyterian Hospital. Wayne experienced the "hurry up and wait" syndrome so typical of the hospital setting and is glad to be finished with the first round. Wayne's surgery is scheduled for 8:00 a.m. and they expect it to take approximately two hours. Dr. Kassam plans to drill a hole about the size of a quarter in Wayne's left temple, through which the surgeons will remove the tumor. The hole in his skull will be filled with titanium. We would appreciate your prayers that there will be no damage to Wayne's optic nerve or the blood vessels that are so close to the tumor. A stroke is one of the possible complications. The Lord has brought Carissa through so much and we choose to trust Him to take care of Wayne, as well. By the way, Carissa is doing much better. She chose to stay at home alone last night and ride to Pittsburgh with her sister, Celeste, tonight. She has improved so much in the last ten days that we felt comfortable leaving her at home. Praise the Lord!
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Life on a Feeding Tube |
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