This is a lot harder than we thought it would be. Last Wednesday Jack had a lot of pain with the turn that night, and every night since. We thought this would be a breeze with how easy those first few turns were. And I thought 30 days would just fly by. But we've discovered that jaw distraction time is like NICU time - it goes very slooowwwly. Every day seems like a week and we both dread the evening when we have to give Jack a bath and clean his sites and then turn his pins. He screams through it all and it's awful. I know the end results will be so worth it - and he's already breathing so much better at night - but it's hard to see the big picture right now. Seems very far away.
He's not eating very well anymore, either. Those first few days he was eating so well it seemed like a dream. But since Wednesday his eating has dropped off dramatically. He vomited about an hour after the turn that night and has only eaten sparingly since then. His stomach really seems off, so we're hoping it may be a reaction to the Tylenol with Codeine they gave us when we left the hospital. We took him off that yesterday and tried Motrin instead. So far that seems to be working much better - he ate a little breakfast this morning and slept really well last night. Since we started the turning he's been really restless at night - waking up and sitting straight up in bed 6 or 7 times a night, but last night he slept straight through. So hopefully we're on to something.
I know this is a good thing for him, and something we had no choice about doing. His surgeon told us his airway was at a zero. It should be 56 squared, or something like that - I guess he's measuring volume? And his was zero. He had no space back there at all. I have no idea how he was breathing or eating. He is a real trooper, this kiddo. I'll be so glad when this is behind us.
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