Surgeon follow up 12-15-10

No more oxygen!!! Well at least not all the time.
I know this is the goal we wanted. That is all good, fine and dandy, BUT I am freaking out. I woke up this morning to his alarms going off because he was Sating 68 %, his O2 was blowing in his eyes. I don't know how a few hours drive can make him ok to not need it anymore. The Cardio was the same that saw him after the last surgery too, and wanted him off O2 then. We all know how that went. Thom wants him to be "normal" but he is not normal. His sats drop when he cries. And he gets really blue/purple. They said he can have O2 at night or whenever I SEE he is more blue then usual. I'm so afraid I am going to miss a warning sign. It is just going to take me some time to get comfortable. I still have the pulse/ox so I can do spot checks on him. Yesterday was a turning point for the kid. He cried only when he was hungry-don't we all. He didn't act like he was in pain. His appetite is back. He gained 4 oz in a week. He now weighs 13.6, he lost over a pound after surgery. He doesn't want to nurse at all. I think it is ok because he probably needs the extra calories. I'll keep trying and maybe that will come back too. It just makes for exhausting night time feedings. He doesn't like to wait for the bottle to warm but he doesn't like it cold either. I tell him the solution is to nurse, its quick and warm but he just doesn't get it. Silly boy.

Hanging out for the echo. He watched the screen like he knew it was his heart he was looking at. His heart is not functioning at 100% but it did improve since the last echo. He will stay on blood pressure medication. Not lovin the EKG. Those stickers really stick! He is still dealing with the Post Traumatic Stress of the hospital stay.
Hanging out with Dad waiting for Bonnie and the Cardio. Look at that "nutrition" as Dr. Kaza calls it