We visited our little man today and were greeted to the nurse hand ventilating him. He apparently had a "moment" when she was turning him onto his other side and he decided that a heart rate and proper breathing technique were not for him. This wasn't an abnormal thing, though, as it happens often enough with children in his condition. Then, he evened out, we changed him and just hung out for a bit. He was doing very well all of a sudden and he had more energy then we've seen him with lately. He was back on PSV ventilation and was doing the best he's done on it so far. He needs less pressure to get as much oxygen into him, which is always a good thing.
Brienne then began kangaroo holding him and he took well to it until the 20 minute mark where he decided he was going to have an "episode" again. All of this is normal-ish, but a bit frustrating. It seems that the whole "two steps forward, one step back" idea is happening in smaller increments of time than before and every day is a bit more of a "Yay...Boo...Yay" type of day. Still, the positive thing to take out of it is that, when he does control his breathing, he controls it far better than he has in the past.
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