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Send emails to 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, December 30, 2005
We are so thankful for your prayers today as we worked through
insurance issues. The Lord heard your prayers!
Carissa was not required to sign up for a Medicare Advantage
Plan (HMO), so Carissa's transplant can be performed without
further approval. Medicaid is available as a secondary
insurance and we were able to enroll in a "prescription only"
policy (PDP).
We are so thankful for key people that helped us today: Sandy and several others from the transplant office, Baret from the York County Assistance office, Dawn from Critical Care, and those who worked overtime to accommodate the influx of calls to the insurance company. They were gifts from God. Thursday, December 29, 2005 Please pray for us! Changes that are being made with the Medicare prescription plans are affecting insurance coverage that has been available to Carissa through Medicare & Medicaid. The details are too confusing to list here, but your urgent prayer is needed. Carissa will no longer be eligible for a transplant in one scenario or will loose 20% of the coverage of all medical bills, including the transplant, in another scenario. Please pray that contact can be made with a person in Medicare/Medicaid that has the authority and knowledge to assist us. Wednesday, December 28, 2005 Carissa regained two of three pounds lost last week. We believe her loss and gain were due to fluids. She continues to be given two liters of IV saline (9.0) daily plus two liters of TPN (IV nutrition). Dr. Kareem increased Carissa's dose of Vancomycin to twice a day with instructions to go to 7 West on Friday morning to check the Vancomycin level in her bloodstream. Carissa was in the hospital last week when a photographer from the
Pittsburgh Post-Gazette arrived to take her picture. The article
with updates about patients featured in it's "Health" section in 2005
was scheduled to be published on We were surprised when we first saw the article today. The picture of Carissa and her dad is large and she is the first patient featured. We appreciate the Post-Gazette's effort to make Carissa's needs known. Here's a link to that article: http://www.post-gazette.com/pg/05362/628502.stm Saturday evening, December 24, 2005 As hoped for, Carissa was dismissed from the hospital early this afternoon. She was able to enjoy most of our family Christmas party at the Hampton Inn. We had a wonderful time! Even though the circumstances were not what we would have hoped for, it really felt like "Christmas" for us. Everyone has gone home, except for Wayne. He will be around for a few more days. Saturday morning, December 24, 2005 Wayne arrived Wednesday evening; Faith, Ben and the kids came in Thursday night; John and Celeste got here just in time for supper last night. Carissa is still in the hospital, but hopefully will be released by noon or so today. We've appealed to the nurses to try to make that happen. She was feeling pretty good yesterday and the fever was under control. John and Celeste rented a room at the nearby Hampton Inn, where we hope to meet later today in order to have our family Christmas time together. We're getting ready right now to eat our traditional Tennessee Christmas breakfast--country ham with biscuits & gravy! Thursday, December 22, 2005 About 9 a.m. this morning we received a call saying that Carissa's bloodwork revealed another infection. She woke up with a fever which rose during the day. After several hours in Seven West, she was admitted to the hospital. The infection is being treated with Vancomycin, so it is a bacteria. A transplant can be performed with a bacteria, but not with a fungus. If no fungus appears in her bloodwork, she could still have a transplant by Christmas. Carissa had looked forward to Christmas with the family. We will still be together for Christmas, but are disappointed that she isn't feeling well and that it will most likely be in a hospital room. Wednesday, December 21, 2005 Carissa had several symptoms this week that caused her to not feel well (cramping, nausea, heart racing, etc.). She lost three pounds. Dr. Kareem says they are all symptoms of being dehydrated. She is at 7W (transplant ER) receiving two bottles of Albumen by IV and she will be receiving two liters of IV saline daily at home. We hope it renews her energy quickly. Faith, Ben, and kids will be coming tomorrow and Celeste and John will be joining us on Friday. We are so thankful that the family will be together for Christmas! Greg and Trish (worship leader & his wife from Grace Fellowship) came to visit us yesterday afternoon. What a blessing they are! Wednesday, December 14, 2005 No more fever and no infection! Carissa's fever on Sunday night may have been stimulated by the anxiety of the moment. It has not returned. Carissa didn't even have to go to the transplant clinic today (a weekly appointment) because blood was drawn on Monday morning. If the cultures were showing the growth of an infection, antibiotics would have been started today. But there was no need! Praise the Lord! Monday, December 12, 2005 About midnight last night the phone rang and a transplant coordinator instructed us to go to the emergency room to admit Carissa. Organs might be coming from Texas. We scampered to the hospital, but experience has taught us that it would be hours before we would know whether the organs were a match. Carissa answered an onslaught of questions, as usual, and nurses drew eighteen vials of blood plus two bottles for cultures. About three thirty a.m., the room was finally quiet and we managed to doze off for a couple of hours. At six a.m. Carissa was wheeled to the surgical holding area where they would finish getting her ready for surgery. The anesthesiologists reviewed her records and asked their own set of questions. About eight o'clock, Dr. Bond informed us that the organs weren't a match. It was another huge roller coaster ride, but it is encouraging. The fact that Carissa was called indicates that Dr. Kareem thinks it is time to transplant Carissa. Carissa has been out of the hospital for two months without a new infection. She was on three IV antibiotics (or antifungals) most of that time, but they have been discontinued. This morning she had a fever of 100 degrees, the first temperature in two months. We pray that the cause isn't an infection. The blood cultures should show growth by Wednesday when we go to clinic, if there is an infection. We are surrounded by your prayers and rest in Our Father's hands. Friday, December 9, 2005 It's beginning to look a lot like Christmas in Pittsburgh! Four to five inches of snow fell last night, and we are thankful to be snug in our room at the Family House. The Family House Board members served a Christmas dinner last night: chicken, new potatoes, peas, salad, rolls, fruit and ice cream. Carissa made an effort to eat with everyone else, but paid for it later with severe cramping in her abdomen and back. It confirmed that she still needs to eat in her room where she can lay on her side and encourage her stomach to empty more effectively. A fund for Carissa has been established with the National Transplant Assistance Fund (NTAF). I will let Carissa explain to you the reason for that fund: http://www.transplantfund.org/Restricted/patient-detail.cfm?pat_id=1398&CFID=3168360&CFTOKEN=20711325 Wednesday, December 7, 2005 Carissa's creatinine, BUN (kidney function), and several liver counts were up today in spite of having increased her fluid intake last week in an effort to lower them. Dr. Kareem discontinued the two antifungal medications (Ambisome & Voriconozole) that Carissa has been taking to see if they are causing the counts to be high. We won't know until blood is drawn next week. Dr. Kareem had planned to have Carissa on the antifungal medications until her transplant to prevent new infections. We pray that she will continue to be infection free. A transplant cannot be performed when she has a fungal infection. A transplant fund is being established for Carissa through a national transplant organization. More information will be available within the next couple of days. Monday, December 5, 2005 A year ago today, Carissa and Sharon arrived at the Family House McKee in Pittsburgh, PA, to begin the transplant process. Little did we know about the challenges and blessings of the coming year. The first time Dr. Kareem (head transplant surgeon) saw Carissa, he looked at her with pain in his eyes and asked Sharon, "How did you let her get into this condition?" The months of battles that followed have answered that question. He (and his team) have fought a good fight. Carissa knows that she wouldn't be alive today if it weren't for Dr. Kareem's (and his team's) diligent effort. Our lives have been enriched by those who have crossed our path. Debbie and Karis, Lin and Gary, Michael and Karen, Caroline and Eimy, Linda and Jessica, Barb and Jenna, Bev and Natalee, Thomas, Ben and Susan, Leah and Pam, Kay, Pam W., Ginny and Dan, Glenda and Lance, Valerie, Nikki and Carlotta, Fred and Frank, and so many others from the Family House that aren't transplant patients or caregivers. They are gifts in the midst of seemingly insurmountable challenges. Debbie and Karis came to visit this afternoon just in time to help us bake cookies and celebrate our one year anniversary with friends at the Family House McKee. Because the choice was to celebrate or cry, we chose to celebrate!
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Life on a Feeding Tube |
