Dear Friends;
After last night I really don't know what to say. It has been awful. Finally around 1 am the pain medication kicked in and she is more comfortable. This morning Dr. Maldini scoped Amanda and the look on both our faces was nothing less than total disappointment. Amanda's scope in less then 24 hours looked so bad. The rejection was now in the severe stage and with this news we are limited. The doctors decided to start the OKT3 one more time. The doctors explained that less the 30% ever receive OKT3 once, and very few ever get two rounds. As we know this is a very harsh medication with lots of side effects. It leaves Amanda's immune system severely depressed and this is dangerous to her. Amanda's history of rejection is not good. Although they expect some rejection in all bowel transplants, not as severe, or as soon and as often as Amanda has been. This is the last time for OKT3, they will up all her steroids and immune suppression medication and keep her at higher levels.
Today has been a very emotional and devastating day for me. For the first time I'm having doubts of this transplant working, the constant suffering and rejection is just too much. Now again we wait day by day and after we are done with the OKT3 we hold our breath again. Amanda received her first dose of OKT3 at 4:40pm 10 minutes later she had a reactions, her lungs filled with fluid, she couldn't breathe and her sats went under 90. Luckily the doctors were here and ordered additional medication to help her breathe. She also is on O2. Truly the poor girl has been through so much, feeling bad so often. It is just too much. The last two days has been the worst of them all. All I can do is cry. Thanks for all the support.
Love
The Buddemeyer Family