Update

Dear Son woke up early this morning and was alert and smiling with the nurse when I came back from my shower. She said she was glad to finally get to "meet" Dear Son. She said he had the most beautiful blue eyes and a great smile.

I spoke with Dear Son and played the music on one of the toys that he likes. He smiled and even laughed until he choked on the ventilator tubing. The rest of the day was pretty rough for him.

The Rounds went fine today. Overall, I have been really pleased with they way they have taken care of Dear Son. I can't believe it's been a week since we arrived at the Big Academic Medical Center and I couldn't help but remember how close he was to dying last weekend. I was thankful we made it to today. Today's chest x-ray finally looked a little better. They removed his catheter, one of his two central lines out and they stopped the sedative, insulin and the morphine. The morphine for pain is now as needed. I thanked them at the end of the rounds today for helping get my son back. The fact that he was alert and smiling this morning meant the world to me. I was worried that even if he recovered, he may not be very responsive. They also brought down the vent settings so if he does well today they make extubate him tomorrow. That's the good news.

Overall though, he had an extremely rough day. He cried a lot and kept choking on the tubing today any time we moved him. We had to move him a lot to change the bed, for a chest x ray and to hook up the extended EEG monitoring. There was one scary moment when he choked on the tubing and started to throw up while we were trying turn him on his side. It's a difficult move with the ventilator tubing, IV's, central line, g tube and catheter hooked up. I am hoping he didn't aspirate any of it-there's just no good way to tell since it happened so fast. He was scheduled for the extended monitoring prior to this hospitalization however now it appears that he may be having some seizures. He was exhausted from the slightest movement today.

Dear Son's Dad is staying with him tonight so I can do some laundry and get some rest. I will return to the hospital tomorrow night.

Thank you for your support through this difficult time. It means a lot to me and to Dear Son.