Day 6 midday update

So little man has been weaned off the oxygen and is doing ok. His X-ray from 4 am - yes, 4 am EVERYDAY- looked a little wetter so they added another dose of his diuretic lasix. They have been trying to put him on oxy codone for pain - citing his irritability for increased pain management. But they don't know our little man - he's pissy because he doesn't like them, is not impressed with their hospitality, and he wants to go home. He settles down when they go away and leave him alone. We have also been trying to get him out of the room more - we had to hook him up to an oxygen tank and a portable heart monitor but he loved it. It also tired him out so he can sleep a little deeper.
We requested Genetics to find out exactly what his tests said and found out in the process that although they did test for CHARGE and he was negative they never actually tested for NOONANS. Ugh. So they are putting it through and hopefully we won't have to wait the 10 weeks for these results. The director of the CHOP Genetics program doesn't think he has it but he does have that fat behind his neck. So, where we thought everything was done it wasn't. Crazy. These people screw things up like everyone else does. So now we wait to see if he has any syndromes associated with his heart defect. Sigh. Thought we were past this.
He is eating pretty well and is currently snoozing in my arms.