Saturday, March 3, 2012
Yesterday was a busy day. I met with the pharmacist, Dr Law and Keli the transplant coordinator. We got a rundown on Kamryn's medications. Dr Law talked with us about a study be Roche the pharmaceutical company that produces a drug to fight CMV. Not all of you know the whole CMV story.
Cytomegalovirus is a common virus that infects 50 to 80 percent of people at some time during their lives but rarely causes obvious illness. It is mainly a problem for certain high-risk groups, including: unborn babies whose mothers become infected with CMV during the pregnancy, children or adults whose immune systems have been weakened by disease or drug treatment, such as organ transplant recipients and the HIV community.
I could give Kamryn CMV through breast milk. It was decided to have her tested and then to have me tested. She was negative, I was positive for having had it not for having it now. If she had an active case of it at the time a heart became available then she couldn't have the heart transplant. So I stopped breast feeding her. Everything I had ever know about how good breast feeding is for the baby got thrown out the window. While my brain knew this was the logical answer my heart didn't like it. Dr.Law knew I had a big inward battle over that. He approached the subject with me gently. When he came back to talk with both Mike and I, I was ready to wage a battle against CMV. The heart Kamryn received was positive for CMV.
The study is to determine how much medication to give an infant to suppress CMV. It is unknown at this time what dosage is correct for a child her size and age. She is about 7 lbs now. This study is world wide and 16 children will be tested. She is number 9. Some data has come out on the first 3 but we are not aware of the results other than no adverse effects were seen in those children. The testing runs for 2 days and blood work is taken over a course of 5 days. The medication will be administered and blood work done while we are in the hospital.
After signing the papers to be a part of the study Keli came in. We talked about signs of rejection, medications and visitor policies at home. There doesn't seem to be anyone who knows when we will be going HOME. I hope soon.