Will is growing a lot, and is probably crossing the 5-pound mark as I write this. He’s slated for an extubation on Thursday, and we’re enjoying dressing him in real clothes, holding him, and interacting with him. He seems well-rested and is frequently alert as we listen to music, talk to him, and play with his hands and feet.
Today we got a partial answer to the question of why he hasn’t been better able to breathe on his own. A fluoroscopy yesterday revealed a partial paralysis of the left side of his diaphragm; an occasional complication related to cardiac surgery. Which doesn’t change his plan of care, but does present another hurdle to cross, and a delay as we ask him to compensate for yet another physical challenge.
I’m not disappointed with him for these setbacks, but I do feel frustrated for him. I accept these physical challenges in and of themselves—I don’t even see his cleft lip and palate anymore, and can’t imagine him with a different kind of heart—but I grieve the effects of them. His breathing is inefficient because of his cleft, and his facial structures make it impossible to give him conventional CPAP to wean him off of the vent (not to mention the feeding issues we’ll likely face later). And now, thinking about the additional inefficiency of trying to work around a malfunctioning diaphragm leaves me sad and short of breath. Even as I accept the larger issues, when I consider their effects, I say “can we get a break?” Yet I’m constantly reminded of his remarkable strength, and unexpected success thus far.