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Send emails to Carissa in care of Sharon at Sharon1992@aol.com. September 30, 2005 Carissa wasn't released from the hospital after all! She spiked a fever again this afternoon. Dr. Costa's reaction was, "I know how to care for you...give you a transplant! That's what you need." Pray that Carissa will be encouraged. Lying in a hospital bed for weeks with no definite improvement is extremely discouraging. She misses her guinea pig, Spunky, and her blue lightning Jeep, not to mention friends and family. September 29, 2005 Carissa may be dismissed from the hospital tomorrow. She has been taking Vancomycin, since she was admitted, for an abscess around her g-tube site. She didn't have a fever today, so we assume this bout with sepsis was caused by a bacteria. They gave her a blood transfusion this evening, which Carissa hopes will help her feel more energetic. She dozed most of the day again. Dr. Costa mentioned today that they will transplant Carissa even if she has an infection. Dr. Kareem said the same thing several weeks ago. So we continue to pray that they will be able to keep the infections under control so that she is eligible for a transplant when one becomes available. Karis and her mom, Debbie, plan to attend a church retreat this weekend. They were called into the hospital today because of blood work results and the doctors wanted to keep Karis. They finally allowed her to go home. Please pray that Karis will be able to attend the retreat without complications. September 28, 2005 Carissa had little to no fever yesterday, but today it is back. It is staying around 101 degrees or below, and we are thankful that it isn't spiking to 105 degrees again. Dr. Costa told us today that they will remove her new feeding line if the fever continues tomorrow. In his usual encouraging manner, Dr. Costa told Carissa that things are going to get better, that she will live a normal life some day. He has told Carissa repeatedly that a strong faith in God is essential as she goes through the transplant process. A Brazilian by birth, his faith is evident as he tends to his patients in a gentle, thoughtful manner. September 27, 2005 2:50 p.m. Carissa feels better today than I anticipated. She had not been feeling bad before she got the fever other than increased nausea. So the fever began early in the infection which is wonderful. She isn't as sick. Dr. Costa is back from three weeks of vacation and we are thrilled. He saw Carissa this morning and said, "You know what is going to happen one of these times you are in the hospital? You are going to get your transplant and are going to do very well." 1:45 a.m. Carissa was admitted to Montifiore Hospital with a fever of 102.8 degrees about 12:10 Tuesday morning. She hadn't been feeling badly, but about 11:30 Monday night, she checked her temperature because she felt warm. It was 101.8 degrees. I'm thankful for the few days she had out of the hospital. Her spirits improved daily. She needed those days for the next round. Your prayers are appreciated. September 26, 2005 Carissa is getting a little stronger though she still has a long ways to go. She is more steady on her feet and she seems encouraged. She has enjoyed sampling fresh juicy peaches and grapes, and wild berry popsicles made with real berries. The fruits empty through her g-tube and/or ostomy well enough for her to enjoy them in small quantities. It was a little too cool for a Rita's Ice today as we returned from 7 West. Maybe Wednesday... September 24, 2005 Here is an email that I received this week and thought you might enjoy reading.
September 23, 2005 We (Sharon & Carissa) were at Seven West (transplant emergency/service wing of the hospital) by 7 a.m. this morning. Carissa's blood work was okay and the last blood cultures drawn were still negative for infection. They drew blood cultures again before we left to double check. We asked about the results of Carissa's full body CT scan, but Dr. Bond hadn't seen the report yet. Unless the results cause concern, it is likely that we won't know anything until next Wednesday, our usual transplant clinic day. No news is good news! One Rita's Ice calls for another... Now that Carissa is out of the hospital and hungry for Rita's Ice, our car may make a habit of driving towards Squirrel Hill following hospital appointments. We said bye to Karen (small bowel transplant) and Michael today as they headed back to Chambersburg. They will be back once a week for clinic, so we'll look forward to seeing them sometimes. Caroline has been back at the Family House the past two weeks. She came back for a check up and found out today that she has some rejection, so she'll have to stay another week or so. Eimy is happy to have the company of her sister in Pittsburgh! Eimy is still recovering from her transplant and is doing well. Karis is back in the hospital with an infection. Thankfully she isn't feeling bad, but she didn't want to return until she had a transplant. Who knows... She might get her transplant call while she's there! September 22, 2005 Carissa underwent the full body CT scan this morning, but we won't know the results until tomorrow. On the way back from the hospital, Carissa wanted a Rita's Ice. After a month in the hospital with little desire to nibble on food, it was a request that was welcomed. I had to park about a half of a block away, but she wanted to pick the flavor, so she steadied herself on my arm and walked with me. It's great to have her out of the hospital. September 21, 2005 Carissa is being dismissed from the hospital today. Hurray!! We will return tomorrow for a test and on Friday for blood work, but at least she will be able to be at the Family House to sleep. Carissa is undergoing a new test. Blood was drawn earlier this week and sent to a specialized lab in Texas. The lab separated the white cells from the red cells, and added radioactive material to the white blood cells. The white cells were injected today through Carissa's Hohn. Tomorrow she will have a CT scan to locate the radioactive white blood cells. If they have congregated in one location, the doctors will know where the fungus is located. If the white blood cells haven't congregated in any one place, they will know that the fungus has been killed. We pray this test will give the doctors a conclusive answer. If there is a source that hasn't been identified through all of the other tests, we pray that it will be found. September 20, 2005 Carissa's fever is gone. Praise the Lord! The only explanation is that her body reacted to the placement of her new Hohn. If she has no fever tonight, she will be released to the Family House tomorrow. Carissa was admitted to Montifiore Hospital with a fever on August 20th and may be dismissed on September 21st. She was out of the hospital for four days between those dates. We pray that she won't have to return until her transplant. Gary and his mom, Lin, went home to Ohio today. There is still a possibility that he will have to have his spleen removed, but maybe Ohio will do him so much good that he won't need surgery again after all. Relish it, Gary! September 19, 2005 A new Hohn (IV feeding line) was placed this morning. Carissa's vein is so damaged that a line cannot be placed there again, and there are few other options. It was a painful process, in spite of the fact that the doctor is from Children's Hospital and small veins are his specialty. Carissa didn't feel well all day. Finally at 5:30 p.m., she asked me to check her temperature. It was 101.3 degrees. Needless to say, it is a huge disappointment. We don't know what the future holds, but we know who holds the future. We wait on the Lord. September 18, 2005 Carissa is getting notably better. She walked on her own a little today and her appetite is returning (nibbles on candy, sips on sodas). She is discussing topics of interest again, so much like her old self. Carissa asked Dr. Kareem how long she is going to have to wait for a transplant. His response was, "Tomorrow." We know it wasn't a promise, but hope it means that she is eligible, if a transplant becomes available. "I had fainted, unless I had believed to see the goodness of the LORD in the land of the living." Psalms 27:13 September 17, 2005 How wonderful to talk to Dr Kareem! And how wonderful to hear him say, "I think we are definitely winning." Carissa didn't have a fever today. She is still very weak, but is getting a little stronger each day. Thank you, Lord! Tom (Uncle Donut) and Linda (Sharon's sister) surprised us with a visit today. They are in the US for two months (live in Brazil) and were able to arrange their schedule to allow a quick trip to Pittsburgh. In keeping with their memories of Carissa's childhood, they gave her a frog with a Band Aid on it's tummy. September 16, 2005 Today a temporary IV line was placed in Carissa's arm, and her Hohn feeding line was removed and sent to the lab for testing. Carissa's TPN (formula) and antifungal medications will be given through the temporary IV line in her arm for two or three days, after which a more permanent IV line (probably Hohn) will be placed again. The goal is to kill the fungus in her veins before placing a new more permanent line. The veins in Carissa's arms blow (IV line comes out of the vein) easily. It is likely that she will have three or more IV lines placed within the next two or three days. It can be frustrating and painful, but will be worth it if they succeed in killing the fungus. It is vital that the fungus be killed. Thank you for praying. Please pray for Karis Kornfield (MK from Brazil), as well. She is feeling better, but her liver counts continue to go up. In a scale between three (mild) and forty (severe) indicating the urgency for a liver transplant, Karis is thirty-two. September 15, 2005 Dr. Bond removed Carissa's oxygen line this morning and she is breathing well on her own. Dr. Daily removed the pigtail (drain) from her stomach. That's progress! Carissa's blood cultures were coming back positive for a fungus within twenty-four hours. The culture taken on the thirteenth was negative until today. Today it came back positive. Carissa is still running a fever. It got up to 101.4 degrees last night. The doctors are struggling with what to do next. Four ladies from home blessed us with a visit today. We enjoyed catching up on news from Harrisburg, as well as the lightheartedness (and a little silliness) of these dear ladies. We aren't alone in our physical battles and pray for dear friends at home, as well as in Pittsburgh, who fight for their health. September 14, 2005 A relief to be on the *transplant floor of the hospital? Believe it or not, yes! To be out of the ICU and in a private room is wonderful. Carissa is enjoying being able to sleep in a quieter room. Carissa is still very weak and she continues to run a low grade fever. The infectious disease doctors have sent her blood samples to a high tech lab in Texas to determine whether the drugs being prescribed are effective against the specific infections in her system. Dr. Bond said that they hoped they would be able to send Carissa home in a day or two. Her condition will need to improve dramatically for Carissa to be ready to come home (Family House). Thank you for continuing to pray for us. We feel your loving arms around us. *The transplant floor is for patients prior to and following a transplant. Being on the floor doesn't expedite a transplant, unfortunately. September 13, 2005 Carissa is being moved to a room on the transplant floor as I write. She's excited about it! Doctors found an infection in Carissa's bladder that may explain the last few days of fever. They put her on an antibiotic last night that is already relieving symptoms. September 12, 2005 Carissa wasn't moved from the ICU today after all. A low grade fever returned and she had quite a bit of pain. They didn't attempt to get her up and help her walk. An infectious disease specialist believes Carissa still has the fungus although blood cultures from Saturday have been negative so far. Tomorrow, he plans to ask Nuclear Medicine whether they can take images of Carissa's Hohn and blood vessels in her chest to look for evidence of a fungus. The transplant team performed a transplant today, so they weren't available for rounds. We hope to learn more tomorrow. 12:00 Carissa had no fever this morning. They plan to get her out of bed and help her walk today, and to move her to the transplant floor, if possible. We're excited about that possibility! September 11, 2005 Carissa was able to get rid of the oxygen mask this evening! The doctor removed the drain from the lining of her lung and, within hours, her oxygen saturation level rose. She is still receiving oxygen through her nose. Carissa's fever continues, but has stayed below 101 degrees. They are considering moving her to the transplant floor. She will be glad to get out of the ICU, but the nurses will need to keep a close eye on her temperature. It was great to see Lin, Gary's mom, after two weeks in Ohio. Gary is doing well except for problems with his liver. We pray they will be quickly resolved. Caroline is here for a check up after two months at home, but is doing well. Eimy spent a couple of days in the hospital this week, but is out now. It takes weeks or months post-transplant to recover and for medicines to be adjusted. September 10, 2005 Carissa's fever continued today but didn't reach the high peaks it did last week. Her blood cultures were positive again today. If they are positive tomorrow, the transplant and infectious disease doctors plan to meet and discuss what to do. Celeste came to visit which cheered Carissa up. She felt more like chatting with her sister and could hear a little better than she would have yesterday. (Oxygen is causing her ears to stop up.) September 9, 2005 8:30 p.m. Dr. Kareem changed all of Carissa's antifungal medications in case the fungus is becoming resistant to the drugs she had been taking. She was given a unit of blood today and doctors are attempting to stimulate her immune system through IVs drugs, as well. They didn't remove Carissa's Hohn (IV feeding line) and we understand why. Antibiotic and antifungal medicines are hard on veins and Carissa's veins blow out easily. IV lines are short, only a little longer than a needle, so there is little protection of the vein, whereas a Hohn is long (goes into her neck) and reaches into the superior vena cava of her heart, so the vein isn't exposed to abrasive drugs. Carissa's veins handle drugs through the Hohn, but not through typical IV lines. 1:30 p.m. Carissa's fever is normal this morning and she is asking for Jell-O and a drink. That's awesome! They drained a liter of fluid from the lining of her stomach yesterday and her oxygen saturation level has improved a lot, so she is breathing better. Both contribute to her desire for food. We expect them to remove her feeding line today, though no one has confirmed it. It was recommended this morning to the transplant team. The biggest challenge is to find a vein in her arms for an IV so that she can be given fluids (saline) for a couple of days. September 8, 2003 8:30 p.m. Carissa's fever spiked again this afternoon. She had two blood cultures that were negative for the fungus, but the culture results received today were positive again (takes 3-5 days for a fungus to grow). They sent today's cultures for further testing to compare it with the one she had two weeks ago. The infectious diseases doctor emphasized again that the fungus Carissa is fighting is really "a wimp." The difficulty lies in not knowing where the fungus is growing. The doctors placed a pigtail to drain fluid from her stomach this afternoon. 2:30 p.m. Carissa hasn't had a fever in two days! We are so thankful. She also looks much better because she is rehydrated. She is still using an oxygen mask, but they are cutting back on the amount of oxygen she is getting in hopes of weaning her from it. The CT scan last night revealed a pocket of water in her abdomen. They are hoping that it will dissipate on it's own. If it doesn't, they will have to insert a drain. Thankfully, the barium given for the CT scan drained through Carissa's ostomy and didn't cause the severe vomiting that she has experienced so many times. Carissa is having a bone scan today because the fungus hasn't been found anywhere but in the blood stream. It seems that the battle against the fungus has been so intense that they believe it has to be somewhere else. We pray that they will find it, if so. Please pray for Karis Kornfield (MK from Brazil) whose liver functions are out of control. Her condition has changed dramatically in the three or four weeks since she was told that her liver will have to be transplanted. I crossed paths with Michael and Karen today. Karen (small bowel transplant patient) looks awesome and is doing so well just six weeks post-transplant. We heard that Gary (multivisceral transplant) & Lin were looking for us, as well. Gary just got back from two weeks in Ohio. He still has some issues with his liver, but the doctors are giving special attention to his case because of new transplant methods used. September 7, 2005 8:30 p.m. Carissa is scheduled to undergo a CT scan of her abdomen as I write. Her blood cultures continue to be positive, so we think they are looking for the infection in her stomach. Pray for her tonight. The barium will probably make her vomit repeatedly, in spite of their having cut the dose in half. 2:00 p.m. Carissa didn't have a fever this morning! Maybe the antifungal medication is gaining ground at last. Carissa is still very weak and tired. They haven't attempted to get her out of bed because she would have difficulty breathing and would probably pass out. She still needs a oxygen mask. If she pulls the oxygen mask to one side long enough to sip a little juice, her saturation level drops quickly. Here's a summary of what has happened, as I understand it:
Dr. Bond told Carissa this morning that they will keep her in the hospital until they are able to balance her medications. It seems that the transplant team is attempting to build her up for a transplant as well as defeat the infection during this hospital stay. She is making one step forward and two backward from the perspective of an uneducated mom, but we are confident the doctors know what they are doing and are thankful for the effort they are making. September 6, 2005 Carissa's fever continues to spike once or twice daily. The good news is that the infection is not one that is resistant to available antibiotics. One of the infectious diseases doctors explained to us this morning that they believe the infection is only in her blood stream, but because of where it is located (possibly on a blood clot somewhere in her system or to the plastic IV feeding line), it is difficult to find and kill. They may have to remove her new Hohn (IV feeding line) and not replace it for two to three days, which would mean that Carissa would have no nutrition for that length of time. It is a drastic measure and one they prefer not to do, but it would allow them to fight the infection more effectively. There would be no plastic to which the infection could adhere. We are thankful that, so far, the infection isn't embedded in an organ. If it were in her heart it would require open heart surgery. We have much for which to be thankful. September 5, 2005 9:00 a.m. This is Wayne writing. I arrived Friday evening and Celeste, Faith & Ben & the kids arrived Saturday afternoon. Fluids were building up around Carissa's lungs, so the doctors opened a hole in her side (Saturday afternoon) to drain the fluid. It was a very painful experience, so she was in intense pain Saturday evening. She felt some better on Sunday. Her nephews and nieces (Kyrie, Davis, Katrina, & baby Truett) went into ICU to visit Carissa, along with Faith and Ben. She was very happy to see them. Celeste spent several hours with Carissa on Sunday afternoon and evening. Sometime last night (Sunday) Carissa was taken out of ICU and placed in a regular room. However, just a few minutes ago (Monday, 8:30 a.m.) we received a call telling us that her fever had spiked to 104.6, so she will be returned to ICU as soon as a room is available there. This is very discouraging news, especially since she has been in the ICU for almost a week and they haven't been able to overpower the fungus with multiple antibiotics. 9:00 p.m. Carissa slept most of the day once her fever and oxygen level were under control. Three of the transplant doctors saw her this morning, but we weren't informed of any changes in her treatment. September 2, 2005 Good news! No signs of a fungus was found in Carissa's heart. So far, all tests have come back negative. Tomorrow they will be doing a bone scan and they still need to check her eyes but, so far, the only sign of a fungus is in her blood work. The infectious diseases doctor is beginning to think that the fungus is simply attaching to Carissa's feeding line and thus gaining access to her blood stream. This is a theory that was discussed almost two and a half years ago when Carissa was in the hospital in Orlando, Florida for twelve days. The question is, how can it be prevented? That is the hot topic of discussion! We are looking forward to having most of our family with us in Pittsburgh this weekend. Wayne (Dad) arrived today and Celeste and Faith, Ben, and kids will be coming tomorrow. We will miss John (Celeste's husband) who has to work. We hope that Carissa will be out of intensive care part of the weekend so that she will be able to enjoy being with the family in a more relaxed setting. Thank you for all of your prayer support! We wish we could thank each of you personally, but we realize that we don't even know you all. From our hearts, please accept our thanks. September 1, 2005 9:45 a.m. Carissa had a CT scan of her sinuses, chest, and abdomen this morning, and they plan to remove the IV feeding line (Hohn) that was placed last week and place a new one today. 2:45 p.m. Carissa is doing better today. She is more alert (sleep helped!) and is talking more. She ate a few bites and got cleaned up this afternoon. Her fever is under control. They increased Carissa's dose of Amphoterisin, and added Caspofungen and another antibiotic (which I can't remember at the moment). They performed a test of her thyroid, but we don't know yet whether they will scope her heart. They found a fungus growing in her Hohn, which is why they will remove it. The MRI of Carissa's spleen and liver was negative. We don't know the results of any other tests 9:15 p.m. X-rays and CT scans were clear; no evidence of infection was found. That's good news!
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