We are home and very happy to be getting back to our "normal" life. Gavin's IV antibiotics and anti fungals end today -- a huge bummer. Gavin is now on his own to fight infection, which we all know by now that his bugs tend to win. Gavin is doing ok but has been struggling to recover from this last admission. He has been extremely bradicardic, low heart rate, which is scary for Adam and I when his heart monitor just doesn't stop alarming.
The plan of action right now is basically to continue to avoid infection, which really we have no control over. We are also trying to see a Dr. at St. Chris's in Philadelphia who specializes in Mitochondrial Disorders. The wait for Gavin's wheelchair is growing long so we are hoping is comes in the near future. Our Docs are also still working on getting us out to Pittsburgh for transplant evaluation, though we still are up in the air about that whole situation. Please pray we can stay home for at least a week or so -- I'm just not ready to go back yet!