|6/14/04 Terrible day. Toby was screaming all day with no breaks. Seemed like he was
in pain from his digestive system trying to get used to having food in it again. Poor
guy. He'll probably sleep all day tomorrow out of exhaustion.
|6/13/04 Toby had a pretty good day today. He is still a little sore but much more like his
ole self. He even played with his toys for about an hour. They restarted his feeds and
he was almost up to full feeds when I left. Go Toby!
|6/12/04 Apparently Toby didn't do so good with the morphine last night. It sedated him
too well and he stopped breathing. Yikes. They had to give him something to reverse
the morphine's effect and switch to Tylenol. I am sure glad we weren't there to see
that! Now he's doing well. The tylenol is killing the pain for him and he's resting
quietly. He's still a little pale but looking more like himself.
|6/11/04 Toby made it through the surgery well. He did not need help breathing
afterwards, which is a great sign. He was in a fair bit of pain when we left him but he
was getting some morphine. He has five new incisions to go with the previous two.
Someday he will be able to make up fine stories about his scars.
|6/10/04 Toby was better today. His work of breathing was less than yesterday, and he
didn't desat as much today. He slept quite a bit, but he also played with his toys for a
whole hour in the morning and a half hour in the afternoon. He has also perfected the
arts of head butting me, kicking me and hitting me. Sheesh - what did I do?
He was still being fed when I left him tonight. Surgery will go ahead as planned. Whew!
|6/9/04 -Not as good a day today. Toby seems to be deteriorating a little. He is desating
for no apparent reason. His work of breathing is noticeably harder as well. There is a
little bit more spittle than usual around his mouth, so maybe he is refluxing and
aspirating. They may have to take him off tube feeds and go to i.v. until surgery. He
was also much quieter than usual today - no awake times all day. That is strange.
Hope he stays stable enough for the surgery on Friday.
|6/8/04 - Today Toby had some awake times where he looked at his toys and
entertained himself, and some fussy times, and some sleepy times. Seems like he is
learning to be a real baby!