Sebastian has had his hip surgery, the metal was removed and off to ICU he was sent. He did very well, that day and night were good for him, but it went very much downhill after that. He is in a lot of pain and having a tough time, thankfully we had a nurse we really like who knows him well and knew how bad he felt.
His j-tube has again migrated into his stomach (for the 4th time since feb. 12th 2008) and he is now awaiting a surgery date to have a permanant one placed. We had really not wanted to go to this step and neither had our pediatrician, but it is no longer a choice. Now even his medications into his stomach have him wretching, gagging and throwing up. Though we prefer to think it is the pain causing his stomach to not work, reality is that it is a progression of his mitochondrial disorder.
Right now he is listening to his i-pod in his special gel bed.