Yesterday evening was wonderful for Gavin -- early this morning has not been so good. It seems like he took a huge step backwards as far as his pain. He is still running a fever which is still a cause for concern. Gavin's underlying issues make this so difficult because children with Mito just do things differently, their bodies extreme reposes to the most simplest changes. This may be the case with Gavin but we just can't rule out infection considering his history. It looks to me like his liver and spleen are becoming more enlarged, which could be the be the cause of the increased pain plus the j-junostomy is putting out a fair amount of blood.
Sunday, March 1, 2009
Well not really -- maybe I should say home sweet home away from home. Anyway, we are out of the ICU and back on the regular pediatric floor. This is a great step towards getting home, not to mention we are so happy to see out 3E family again. You all mean so much to us and have helped us through so many hard times -- we are glad to be back.
We are going to tweak a few things to try to figure out the cause of pain and also the cause of fever. We need to be fever free to get a new central line so let pray we can figure this all out soon!