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Send emails to Carissa in care of Sharon at Sharon1992@aol.com. October 31, 2005 - 11:30 a.m. June Stamos (transplant coordinator) called to say that Carissa's last blood culture is growing an infection. We will begin giving Vancomycin by IV twice a day as soon as it is delivered by our supplier. She is already taking Voriconazole twice a day and Ambisome once a day by IV. October 30, 2005
Carissa & Karis We had an awesome weekend celebration of Carissa's birthday. A friend from Karis and Debbie Kornfield's church has a beautiful second home in the woods near Bedford, Pennsylvania. He has a tender heart for transplant patients because his wife had three kidney transplants, and they built the home as a place to retreat. The Kornfield's invited us to go with them to this home sometime, and it was a perfect get-away for Carissa's birthday. Wayne, Faith (Carissa's sister), Ben, and their four kids were all able to be with us. Carissa and Karis enjoyed sitting on the couch in the warmth of a cozy fireplace watching all of the action around them. We put two large puzzles together, played games, watched the kids play on the deck, ate often, and enjoyed walking around the lake. We also watched the video "The God's Must Be Crazy," which Debbie and Karis loved because of their MK experience. It was so refreshing and encouraging to be surrounded by the beauty of God's creation. Autumn leaves were at their peak in color and the landscape reminded us of the hills of Tennessee. We absorbed the beauty of the changing of the seasons and in the hearts of those who share the pains and joys of the transplant experience. Thank you for the many cards. Our mailbox was full when we returned, although we were only gone from Thursday noon to Saturday afternoon. Carissa was also cheered by a huge balloon bouquet. She continues to be encouraged by your expressions of love and prayers. October 22, 2005 Carissa continues to plug along at the Family House McKee. She hasn't had a fever, praise the Lord! The area around her g-tube site continues to be sore, but there is no abscess. We enjoyed a visit from Loren Andersen on Thursday afternoon. He taught us how to play "Upwords" and it was a lot of fun. Karis and Debbie Kornfield also came to visit, so Loren was able to meet them, and was exposed a little more to the "pre-transplant world." We appreciated his encouragement. Carissa continues to long for a transplant by her birthday. We (family and others) understand that it may not happen and are making plans that will, hopefully, make her birthday happy even if she has no new organs. October 18, 2005 Carissa was wiped out after our Friday outing, but that is typical for pre-transplant patients. But she continued to sit up and work on projects of interest, at times, this past week and made her first two trips udownstairs to the kitchen in months. That's encouraging! Carissa's g-tube site continues to be irritated and painful in spite of our efforts to keep it dry by changing the dressing daily and using a medicated powder and spray. We will be going to the transplant clinic tomorrow, so we'll see what the doctors say. Carissa frequently says, "Phone, ring!" She longs to have new organs by her birthday which is October 28th. She can think of no better gift. Comcast is having problems with their cable internet access in Pittsburgh. The update below failed to publish because of the problem, in spite of efforts made by repairmen on Wednesday afternoon to correct it. Let me assure you that if Carissa is called for a transplant or there is a major change in her condition, an update will be posted someway. We had a visit from Ginny and Dan (transplant patient) this afternoon. Ginny will brighten any room with her warmth and cheer. It was good to see them. October 14, 2005 Blood cultures were drawn this morning, but they didn't need to culture the abscess around her g-tube site. We decided last night to use a powder and spray that was prescribed for Carissa's ostomy, and her g-tube site was amazingly better today. We are thankful for a minor infection! We left 7 West a little after noon. Carissa had napped a little while there and wasn't quite ready to go home. We visited Jessica (25 year old four-organ transplant patient) on 12 North and then went to the Waterfront (shopping center) for a little while. It's wonderful for her to feel like doing anything other than the necessary hospital trips. October 13, 2005 Carissa appears to have an abscess around her g-tube site. We are scheduled to be at 7 West tomorrow morning at 9 a.m. Thankfully, she isn't running a fever yet. Doctors were treating an abscess in the same location while she was in the hospital, but they discontinued Vancomycin when she was released from the hospital. October 12, 2005 Carissa is doing well. We were only at the transplant clinic for blood work and a visit with the nurse this morning. There was no apparent reason for her to see Dr. Kareem. That's a good thing! Carissa hasn't gained weight, but she wasn't dehydrated this time, so we'll see what happens by next week. Maybe a transplant? Carissa finished one of the puzzles Eimy gave her, and is ready to tear it apart and start the next one. She's also working on crossword and number puzzles, and Invisible Ink Quiz and Game books. She hasn't wanted to get out of the Family House much with the changing of the weather, but she is much steadier on her feet and is able to handle the weight of her medical bags (TPN, g-tube, ostomy). A patient from the McKee Family House had a small bowel transplant last night/this morning. Glenda was here waiting with her son and granddaughter, and was very concerned for her husband who was home alone. We're happy for her. I saw Michael briefly this morning in the parking garage and Karen is doing well. It was awesome to cross their path. Natalie is doing well and may go home on Friday. To us, it is incredible that she is doing so well having undergone a kidney transplant followed by a pancreas transplant a few months later. October 8, 2005 Celeste, Carissa's sister, came to visit today. She's like a breath of fresh air to us. We've enjoyed chatting and playing the game "Life." Carissa's been her old self—animated, laughing, and able to be the banker. It's great! October 7, 2005 Carissa's blood work results were good today, so we won't have to go back to Montifiore until clinic on Wednesday. Eimy is getting ready to go home, within a week or so, for three weeks. We are excited for her, though we will miss her. She gave us some puzzles that she has enjoyed during her Pittsburgh stay and Carissa began putting one of them together today. We were honored by a visit from a transplant couple today. Ginny gave her husband, Dan, a kidney this past May. They were at the Family House McKee for two months or longer, so it was a real treat to see them. (We have a special connection through Brian and Crystal Salsman.) They brought us a number of yummy homemade goodies (from Ginny's kitchen), as well as puzzle books for Carissa, A Purpose Driven Life by Rick Warren for me, and a card from their Sunday School class that is praying for us. We are so blessed! October 6, 2005 Carissa was tired today after a full day at the pre-transplant clinic and 7 West yesterday, and she has to go back to 7 West tomorrow morning. They are keeping close tabs on her blood work because she was a little dehydrated and her potassium was low. There is a balancing act that a patient with a g-tube (drains stomach) and/or ostomy (drains small bowel) has to play. For every cup of liquid or solid food taken in by mouth, a cup and a half is output. So eating and drinking actually causes dehydration. The patient has the choice of not eating or drinking, or taking additional fluids intravenously. October 5, 2005 Today was the first day for us to go to the pre-transplant clinic in six or more weeks because Carissa has been in the hospital on Wednesdays. It's always interesting to see who is or is not there, and find out whether the ones missing got transplants. It might sound like a gossip circle, but it is really a family atmosphere. Carissa and Jenna consoled each other, being the ones who are still waiting after many months. We found out today that Carissa is taking Hydrocortisone (a steroid) to control her fever as well as to help her gain weight. Carissa's beginning to feel the hunger a steroid causes, and so is mom, as she runs up and down two floors for almost every bite Carissa wants to eat. A steroid would also explain Carissa's sudden energy boost (relatively speaking). Dr. Kareem is convinced Carissa will gain weight now. He said, "You just watch and see." It worked for Jenna... October 4, 2005 Carissa seems a little stronger than she has been in several weeks. She wanted to go with me this afternoon to the Italian store that is two blocks away. She isn't up to walking that far, so I pushed her in a wheel chair. The weather was beautiful and we thoroughly enjoyed our short outing. Debbie and Karis found a book at the library with some stories about guinea pigs and checked it out for Carissa. I had read the first story and knew that it was hilarious, but was waiting for Carissa to ask me to read it to her. Ask she did, and she managed to focus enough for us to have several good laughs together. We're so thankful for improvement! October 3, 2005 Carissa is out of the hospital! Wayne picked her up at the hospital in her "Blue Lightning Jeep" that is freshly washed and hand waxed. It's a head turner and, though cautious about having it in Pittsburgh, she is excited. Dr. Costa told us today that Carissa's blood cultures were clear throughout this hospital stay. That is wonderful news! Then why the fever? They believe it was caused by injections of Gamma Interferon that were prescribed to stimulate her immune system. Dr. Costa said that the negative blood cultures indicate she is ready for a transplant. We echoed, "We're ready!" He begged for a night of sleep first, but said that tomorrow he will be ready. Of course, we have been through this before and know that the availability of organs has nothing to do with the readiness of the doctors. So we continue to pray. October 1, 2005 The changing of seasons have been difficult for us this year. The amount of time spent away from home is accentuated. But the weather is beautiful right now in Pittsburgh and for that we are thankful. We (Dad & Mom) had hoped to get permission to take Carissa out of the hospital for an hour or so on a pass. Children's Hospital allows patients who are able (such as Karis) to leave for an hour or two at a time. Our friend Gary was also able to leave Montifiore on a pass several times, but we didn't succeed in getting permission. We were told it is against hospital policy. Carissa had a fever until about 2:00 a.m. She slept most of the day, but woke up a little more this evening. Carissa's dad asked for her input regarding the layout of a template for a newsletter he is creating. She seemed to enjoy drawing from her graphics training at Messiah College. Please pray for Karis. She is back in the hospital with a line infection. The infectious diseases doctors feel that her line needs to be removed, but her veins are all occluded and unsuitable for the placement of a new line. A number of doctors plan to meet on Monday to discuss what to do.
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Life on a Feeding Tube |
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