One of the hardest part about raising a child with a progressive illness is looking back at old photos and videos. Adam and I don't always see the small ways that Gavin is getting sicker, which I'm sure is a good thing and just another way we cope. Today I was looking through some old photos on the computer and I found these photos from only a few months ago. I really miss this kid. For sanity's sake I probably should not be looking to the past, but these are the memories I want to keep close to my heart.
Yesterday was a day I never want to repeat. Gavin was tired to the point of psychosis and nothing was helping. The morphine finally gave him the relief he needed and he slept most of the night. This morning he is still dealing with intense agitation but thankfully seems to be sleeping better, as he has been asleep for the past hour or so. We have some plans and far as making him comfortable but the docs just need to make sure nothing is going to make his other issues worse.
He continues to look more yellow today with out any answers why. I haven't heard of his bili levels today. As I kinda figured we will not be going to the OR today. Maybe tomorrow. They are trying to coordinate his bone marrow biopsy to be done the same time as then line.