Saturday, January 28, 2012
t. It takes about 2 weeks for all of the tests and a meeting with the cardio panel. At that time she will be put on the list if she meets the criteria. the criteria are: no potential rejection due to viruses she may carry, no genetic issues, her quality of life is compromised by having a non functioning heart. She is unable to function outside the hospital. The current medication she is on would put her on the list for people needing a heart right away. The surgery is very straight forward. The medications and restrictions she will be on after the transplant are not. Right after the surgery she will be on a slue of medications at high doses to prevent rejection. The medications have side effects. After a year the rejections rate drops. If she gets a heart as an infant the rejection rate is less because of the fewer antibodies in her body. Right now she is on a blood protocol to prevent unwanted antibodies. This is difficult, to think of someone lossing a child to help ours. This is what we will do for another family if Kamryn doesn't make it through all of this. It is hard for me to think about, and difficult to write. But God is in control and we are committed to His path. Knowing you are praying for our family gets me through the day. There are many more days to come. We don't know when a heart will be available or if she will be able to maintain it when she gets one. My prayers are with the Drs who make the decisions and fight for the children here in the CICU. There job is so difficult. God is in control and we are committed to His path.