Today I was able to rescheduled Gavin's appointment at St. Christopher's in Philadelphia at the metabolic clinic. He is penciled in for the 7th of August and I am prying that He can be home so we can go. Adam and I are feeling more desperate for this appointment than ever. We need some direction as to his condition in order to make a more informed decision on going to Pittsburgh. The transplant evaluation in an invasive 5 day inpatient stay and I don't want to put Gavin through that if we feel transplant is not in Gavin's best interest.
Gavin started with a fever today of 101, which really isn't very high but still is raising my stress level. His gastric output is high and very smelly, which just screams infection. We just need some time here at home. I don't think any of us have actually adjusted to being home yet and it has been 4 days!
Thanks for your continued support and prayers!