11/03-04/10

Things appear to be going okay. They started his feedings and he is doing fine with it so far. 

It's odd the way they do it. They feed him a little bit, a while later, suck it out of his stomach in a tube to see if he's digesting it okay. Then, they put it back in and let him finish. It makes sense, he's worked really hard to digest it, let him finish instead of starting all over again. But it seems a little gross.

He had another transfusion yesterday. What can we say; the kid loves new blood.

His breathing is still an issue. He has been on two different types of ventilation, and he was doing okay with it for a while, but his lungs have started to develop problems.
When they ventilate him, his lungs expand to a certain pressure, then he gets a certain number of breaths per minute. Not all of his air sacks in the lungs have been fully open the whole time.
The problem is that they don't want to over-ventilate him and cause further damage. So they have backed down the pressure and increased the oxygen saturation level. Where he was as low at times as 30-40%, he's now at 60-70%.
Too much oxygen can also cause damage. Vision issues and brain damage are the two most common issues if he stays that high for too long.
There was also some water around his lungs that was preventing proper oxygenation from happening. They gave him a diuretic (water pill), and the water seems to be going away.


In the next couple of days, if it doesn't get better, we have to talk about putting him on steroids to get his lungs to develop at a quicker pace. 
Nobody wants to do this unless they have to. There are risks for developmental problems if he's put on steroids. I guess there is a certain kind of steroid that is relatively new, and has minimal side-effects they are thinking of using. I think we have some reading ahead of us.

While I was spending time with Omi yesterday, the Nurse Manager came in to talk to me. She told me they had just won a quality excellence award, and asked if it was okay for them to film a short clip of one his doctors with him. It will just take a minute. They are going to show it at a ceremony for fund raisers and political people, explaining what they do. Sure, why not.
The camera guy said he will send me a link to the clip when it's finished, and I'll post it here.