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August 31, 2005 8:30 p.m. Carissa's fever spiked again this afternoon, but they were able to get it down with Tylenol and Motrin. She was on a cooling blanket throughout the day, including when her fever spiked. Carissa's blood cultures have been clear so far, so they don't know for sure what they are fighting. Cardiology performed an echocardiogram this afternoon. The resident who performed the test saw no signs of a fungus. Tomorrow they plan to run a scope through her heart to be sure there is no fungus. An Infectious Diseases doctor plans to run a variety of tests until the source of the fungus is found. Please pray that it will be found soon. Last Sunday morning, my Pittsburgh pastor's sermon was from Matthew 20:29-34. The pastor emphasized that the blind men were shouting, "Lord, Son of David, have mercy on us!" When the crowd around them (including disciples) told them to be quiet, they just shouted louder, "Lord, Son of David, have mercy on us!" Jesus heard them and answered their prayer. Based on that passage, I continue to plea for the Lord to have mercy on Carissa and have no reservations about asking you to pray likewise. If the Lord chooses to take her home to be with Him, I believe it will be to spare her of more suffering and I will thank Him. But until then... 1:30 p.m. Carissa slept most of the time I (Sharon) was in her ICU room this morning, but is doing well. She was awake most of the night because of medical personnel working with her. Dr. Costa told me that Carissa's new white blood cell count jumped 90% yesterday, but has dropped to normal today. (In other words, her body was fighting an infection fiercely yesterday, but it is no longer needing to fight.) Cipro is working! Dr. Costa told Carissa that better days are coming. We are thankful for his continual encouragement! Jessica, a 26 year old patient with Carissa's same diagnosis (gastroparesis, intestinal dysmotility, pseudo obstruction), received a transplant last night. We are thrilled for her and her family. 9:30 a.m. Carissa's fever is down to 98.6 degrees and her blood pressure has stabilized. Praise the Lord! August 30, 2005 11:30 p.m. Carissa spiked a fever of 105.6 degrees this evening and was transferred to the ICU about 10:30 p.m. They were able to get her fever down to around 100 degrees this afternoon, but it took Tylenol, Motrin, ice packs and a cooling blanket to bring it down after it spiked the second time. Cipro was added to her regimen of antibiotics. The ICU doctor that examined Carissa said that some of her blood work results were atypical for her, so the move to ICU was precautionary. August, 30, 2005 Carissa woke up with a fever of 101.5 degrees around 3:30 this morning. By the time she was admitted to the hospital and they gave her Tylenol, it had spiked to 104.7 degrees. Dr. Kareem asked me how they could transplant her if she continues to get these infections. However, he promised to do everything possible because she is young. August 29, 2005 Carissa has an appointment with an ophthalmologist tomorrow at 9:45 a.m. to examine her eyes for evidence of the fungus. She has been scheduled for an echocardiogram on Thursday at 4:00 p.m. We pray that testing results will be accurate and that the Lord will give wisdom as doctors determine the next step in Carissa's care. We're thankful that when our prayers seem small that we are surrounded by a chorus of fellow Christians around the world pleading before the Lord. August 26, 2005 Carissa was released from the hospital yesterday. She underwent an MRI before release and, since we didn't hear any bad news today, we hope it showed no evidence of a fungus infection. Dr. Kareem plans to keep her on IV Amphoterisin-B (antifungal drug) until transplant. That's encouraging! Wayne, Carissa's dad, came to visit us yesterday. He tries to come every two weeks or so, but surprised us by an early visit this time. Mom appreciates the encouragement and Carissa appreciates having Photoshop loaded onto her newly rebuilt computer. Dad's gathering needed documentation so that Carissa's Jeep can be inspected and her registration completed, as well. She'll be happy to have her pride and joy ready to roll. August 24, 2005 Nothing new was learned today regarding the fungus. Carissa is still in the hospital and is waiting for the MRI. Carissa was teary today after reading an email regarding the fact that a donor has to die in order to donate organs. She wishes families could understand the amazing gift that organ donation is. It is the gift of life. She mentioned how deeply thankful she will be if she becomes a recipient. She hopes to one day be able to meet the family and thank them personally. August 23, 2005 Carissa was awake all day today and her fever has broken. They removed her Hohn (IV feeding line) and placed a new one this morning. There was a steady flow of medical personnel in and out of the room the rest of the day, so it felt busy. Dr. Kareem told us today that he cannot do the transplant as long as she has a fungus infection, so they need to identify the source. They plan to do an MRI of her liver and spleen to see whether the fungus has infected one of them. If no infection is found, they will look for the fungus in her heart (through a scope). Carissa was in good spirits today. She spent some time working on her computer and plans to watch a number of DVDs on it. Unfortunately, she can't connect to email while in the hospital. The Lord continues to sustain us and keep us through His grace. August 22, 2005 Carissa is still sleeping most of the time (due to weakness, but also meds) and her fever was up to 101.5 again tonight. The infectious diseases doctor said that they will be keeping her in the hospital until they are sure the fungal infection is gone. We wouldn't have it any other way. Karis was released from Children's Hospital today and felt well enough to walk all the way to Montifiore Hospital to visit us before leaving. It is always a treat for us to see her. Debbie (Karis's mom) found out today that Carissa and Karis are on different transplant lists even though they have the same blood type and need the same organs. Karis is able to receive organs from an adult donor. Carissa is so small that she needs children's organs. Sometimes I have felt guilty about praying for organs because of the reality that someone has to die for organs to be available. After months of observation I understand that my prayer isn't for someone to die. My prayer is for the family of someone who will die; that they will have the courage to donate organs in the midst of their sorrow. August 21, 2005 Carissa has a fungus line infection again! Her small bowel was removed to prevent fungus infections, so it isn't news we wanted to hear. Dr. Kareem said it is a mystery where the infection came from and that they will have to figure it out. Fungus' are exceptionally life threatening after a transplant, so we expect that this new infection will delay the transplant. It is discouraging news. Pray for us! August 20, 2000 Carissa was admitted to Montifiore Hospital yesterday with a fever of 103°. Doctor Costa put her on a second antibiotic (had been taking Vancomycin once a day) and added an antifungal drug today. By tomorrow, blood cultures should begin to reveal the type of infection causing sepsis this time. Carissa has slept most of the time since being admitted. Sepsis always exhausts her and it is discouraging to be fighting it again. Dad came to visit this weekend, which helps! We hope that Carissa will feel well enough to visit with him sometime today. Karen may be dismissed from the hospital this coming Tuesday, and Gary and Lin (Gary's mom) are in Ohio for two weeks. Amazing how much hope this news gives! August 17, 2005 Carissa lost two more pounds. The doctors decided to add lipids (fat) to her TPN (formula for IV feedings) daily knowing that it will cause her liver counts to go up. It's a difficult to balance the prevention of weight loss with the protection of her liver. Dr. Kareem remembers one other patient who battled with unexplained weight loss. He wonders whether the cause was (and is in Carissa's case) a high metabolism. Carissa ate more than her dad before she became ill and never weighed over 110 pounds, so it is likely. We know that Carissa is a major topic of discussion in the transplant team's meetings on Friday mornings. We pray that the Lord will give the doctors wisdom and guidance regarding her case. Updates on transplant friends: Eimy is out of intensive care and is doing well with her recovery from a transplant, but she is still struggling with severe pain. It was expected due to the many polyps that were removed. Her sister, Caroline, is at home (not Pittsburgh home) and loving it. Gary is back at "Hotel Transplant" (as they call the Residence Inn) and is doing much better. They are still trying to figure out what is happening with his liver, but are making progress. Karis's mom is in Brazil with her sisters for a couple of weeks. Her dad has learned how to care for Karis as well as all of the household chores. A friend and nurse will be coming soon to spend a few days with Karis while mom and dad (and sisters) meet for a couple of days in Brazil. We're disappointed that Michael and Karen decided to move from the McKee Family House to the Residence Inn, but we understand the benefits for them. Karen had some scary moments post-transplant, but is doing well now. Thank you for all of your prayer support. In the transplant world we live from moment to moment, taking none for granted. August 12, 2005 Karis and her dad visited us yesterday afternoon. Karis had just left the clinic where she had been told that they will need to transplant her liver. So her status changed from a modified multivisceral to a multivisceral, the same as Carissa's, one day later. Karis and her family are a precious reminder of God's grace through trial. It takes immense courage for Karis to undergo a transplant again (first one failed a year ago and she faced incredible complications). But the sweetness of her spirit gives no room to bitterness. August 11, 2005 Dr. Kareem decided yesterday to transplant Carissa's liver. Her liver counts continue to be high and there is no clear explanation why (TPN is being tweaked to prevent high levels, she isn't dehydrated, etc.). Dr. Kareem concluded that Carissa's liver isn't metabolizing properly and fears that her liver will fail during or after transplant. Carissa's transplant coordinator, June, got approval from the insurance company and placed her on the list for a multivisceral transplant (5 organs--stomach, pancreas, duodenum, small bowel, liver) rather than a modified multivisceral (4 organs--without liver). June doesn't think the new status will delay the transplant. The greatest delay is caused by the high demand (world wide) for a pancreas. The decision wasn't a total surprise to us. It isn't the news that we wanted, but we understand the need. It increases the extensiveness of the surgery, but it may be best in the long run. We, again, appreciate your prayers! Jena, the energetic transplant patient that bops the halls of Montifiore, turns twenty-one on Sunday. She has invited us to her party, so Carissa wanted to look for a gift yesterday, as well as pick up a few other items. We were out for three or four hours and Carissa did well. She's still asleep today (almost 2 p.m.). Making up for lost time! Eimy was transplanted last Monday. We are so happy for her and her family. The surgeons removed numerous polyps, but they don't think they were cancerous (are being tested). Dr. Kareem said that Eimy is a very lucky girl. August 5, 2005 Carissa was released from UPMC Presby about 11:00 a.m. The procedure only took about 30 minutes. No stones were found in her ducts, so the high liver counts are caused by TPN (IV formula used to feed her). Carissa's liver has done well until recently. Dr. Kareem checked it when he removed her small bowel and said that it looked good. If she receives a transplant soon, her liver counts will adjust after transplant. As we waited in the Medical Procedure holding area, it dawned on me that people around us were nervous about similar procedures they were undergoing. We felt no fear. Our perspective has changed significantly over the years and the Lord is with us. Thank you for praying. August 4, 2005 Tomorrow morning Carissa will undergo a procedure to remove stones from a bile duct in her liver. Dr. Kareem believes it is the cause of Carissa's elevated liver counts. She will arrive at UPMC Presbyterian at 7:00 a.m. and the procedure is scheduled for 9:00 a.m. It should take about an hour. Thank you for praying! August 3, 2005 Carissa was dismissed from the transplant clinic by 9:00 this morning for the very first time. Her blood work results were good, and since she has had no fevers and her blood cultures have been clear the past two weeks, she didn't have to stay to see Dr. Kareem. She didn't gain any weight, but that was no surprise. We walked out of the clinic this morning in a mild state of shock. What should we do? We never get away from the clinic before noon. It was too early to visit friends in the hospital. But it didn't take Carissa long to decide what she wanted to do--finish the shopping trip we began last week. She had a coupon for $10 off at Kohls that had to be used before transplant! Once again Carissa's drive amazed me. She was as limp as a wet cloth yesterday, but today she didn't want to stop. And it was worth it. She came back to the Family House with a few treasures for redecorating her bedroom and some new foods to nibble on. Transplant friends are on our hearts. Gary fought a severe battle last week that almost took his life. He's doing better, but isn't out of the woods yet. Karen faced serious rejection and underwent surgery again yesterday. She was on the verge of loosing her new small bowel. Their dedicated caregivers ride an emotional tide that only God can calm. Thankfully, He is a refuge in the time of storm.
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Life on a Feeding Tube |
