Look, Ma, no tube!


This hat is from Matt and Annie Healey - it is large enough that Aidan keeps accidentally pulling it over his eyes. I believe it's Matt's plan to cause some early annoyance to make up for what Aidan will do to him in the future.

Sleepy boy. Hat is on more securely now.

Hi there.


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Day 24 - Little News

Since Shannon is out of the country and probably limited in his ability to remind us that we haven't updated the site recently, here's the current news. Things are happening slowly right now - as the nurse practitioner said yesterday, "it's at the point of hurry up and wait."

The one bit of news is that Aidan decided to remove his own NG tube on Saturday night and they've left it out. He's now taking all his food by mouth. The problem is that he is still really young and he's not experienced enough with the suck-swallow-breathe reflex so when he eats and begins to fall asleep, his blood oxygen level crashes and if gets too low for too long it affects his heart rate. Neither of these things is good. We now have to watch and wait for his muscle memory to catch up so even unconscious, he remembers to breathe.

On the good side, they say this is the last hurdle to clear before he can come home. The nurse-practitioner cautiously guessed 7 to 10 days, although she didn't like to say it aloud in case he heard and decided to throw a wrench in the works. The bad part is being the parents watching their child struggle. I have a new-found respect for parents who feel the pain of their child. I always thought I was quite empathetic, but this is much harder than I ever expected. I can't wait to get through this worry so I can move on to other reasons to worry about him.


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