Ian's update 4/2 PM

In general it was an okay day for Ian. They've been weaning him off of Oxygen and his numbers have stayed at a good level. As of last night before we went to bed they were at 50% and his 8pm blood gas was good - Oxygen 141, Carbon 28.

They had to move the line from his belly button into his arm. They put in a PICC line so they wouldn't have to change it again. Mike headed in right while they were finishing it and he seemed to do well. Of course they had give him a bolus of Morphine before they did it to make him more comfortable.

Dr. D took a look at my eyes and approved me to come in and see him. I arrived earlier in the day (a friend gave me a ride because she had an appointment there anyway) but I was so afraid to get turned down again that I thought I'd wait until I had another round of drops to make sure I was okay. I'm glad I did because I really wanted to see him.

He looked good, except for the eye thing again (they occasionally roll to the back of his head while he has them open) . That's driving me crazy! I wish they could give an answer for it but there doesn't seem to be one. He doesn't always do it but enough to cause us concern.

The head of the Mattel Children's Hospital (the division of UCLA that Ian is being taken care of), Dr. McCabe, came down to look at him while we were there.  He said Dr. D had another theory for a possible Syndrome that Ian has so he wanted to check him out to see what he thought. He was quite friendly, explained what he was doing there to Mike while I was changing Ian's diaper and taking his temperature. Then he performed a short exam of him.

I'm not even going to type out what he was looking for because Mike looked it up on Wiki after he left and it's not a good thing. We're really hoping the tests come back negative. He said they send his blood to a research lab and I believe he said it would take a couple of weeks. If that comes back negative, he said he'll do another test and send it to the Johns Hopkins lab. He said it's just better to do these tests now instead of thinking about it in a year regretting not knowing before hand.

They were going to let me hold Ian today, but the fellow on thought it best to wait until tomorrow (4-3) because he'd had such a big day with the PICC line. That's okay by me. I'm willing to wait until he's ready. I don't want to push him. I'm going to be nervous enough so I want us both to be as comfortable as possible.