Friday, 3/25

Today was a good day with Dinky. Neither one of us held him today because it really takes a lot out of him and we wanted to give him a little rest. Soon! Thank you all for your sweet, sweet comments. It truly was an incredible experience.

He was doing well today. He did have a few episodes but they seemed to be a direct relation to needing to be suctioned, or being upset when they are doing something with him, and he recovered very well once that stopped. Other than that nothing has really changed. He continues to be at "full feeds" and is stable on the ventilator. They tried switching him to a different ventilator yesterday and he tolerated it for a while but then they had to go back. It was still a conventional ventilator but the settings were much lower. Today he is pretty much back where he was before that change. I really just don't know if he's going to be able to come off the ventilator until his diaphragm is fixed.

The main issue right now is his PDA. This is the open duct in his heart. We've known it was open for a while now but it seems to be more of a problem than in the past. It has gotten a lot bigger. They will try one dose of Indocin on Monday (one of three...he's already had 2 complete rounds of this without success) and then do an ECHO to see if it is working. If it's not working they just won't try the other 2 doses because there's a small chance of it working. It becomes less likely when you are doing it for the 3rd time and also he's getting a little older which also makes it less likely to work. Unfortunately if it doesn't work they will have to do surgery. The catch here is that right now they don't do this surgery at the hospital where he is and he may have to go to Columbia in NYC. They are starting a program where the doctors from Columbia come here but we don't know if it will be up and running by then.

On a lighter note...if you have ever changed a boy's diaper you know the "risk" you run if you get distracted. Well, Veronica, Dinky's favorite nurse, got caught up gazing at his face while changing his diaper and got quite a shower. She said she even had to change her scrubs! She got such a kick out of this. She's a gem.