Tuesday, July 29, 2014

Post Surgery Day 1

It's almost 24 hours exactly since they started the incision to do surgery.  (Getting his body prepped and all the lines in takes a long time)  He has a line going in his neck that gives him all of his medicines, and an arterial line in his groin that monitors blood pressure. And it works well for doing blood draws, which they do every few hours. He has two tubes coming out of his abdomen to get fluid out of his chest, the ventilator still on, and he has a few small pacemaker wires that are in him Those are hooked to a "pacer" which essentially is like an external pace maker that helps his heart keep pace and rhythm. It's mostly on back up mode, but they like to use it so his heart doesn't have to work too hard on it's own. 

There's a meeting today when they do PICU rounds, he'll be first up. They'll discuss his plan for the day.  Our best guess is that before they take the ventilator out, they have to start weening him from other things to see how he tolerates everything.  They need to have an extended amount of time where he isn't so sedated and on certain meds so they can see how he does. After he proves (while awake..eek!) that he is ready, they'll take it out.  That will be the toughest part. He'll be awake, looking around, but will have that tightly taped to his face. His lips are puckered like a fish because it keeps the tubes in securely and the tubes don't bounch around inside or outisde of him.  (That hurts.)  Another guess, is that he'll be off the machine tomorrow if possible.

He's on lots of pain meds and hasn't grimmaced too much.  He actually is probably on more than typical babies his age because statistically, kids with DS require more pain meds as their body usually seems to flush through it quicker. 

Ryan went to work this morning. I told him he should work while Miles is mostly sedated. No sense two of us sitting here. Plus, Miles will have lots of appointments and/or be sick the rest of the year, and I'll need him to be home, especially in September.  When he gets moved to the regular floor, we won't have as much nursing care, so we'll be doing alot more of the work. (feeding, entertaining, etc.)

I'm off soon to an Infant CPR/first aid course.  Lovely, huh?  I was certified awhile ago, but they want cardiac parents completely refreshed and ready to use it if needed at home.  Guessing that's mostly for the few weeks following surgery.  I'll be with other parents as well.

I ran quick to Starbucks this morning across the street. Hadn't seen or felt the sunlight since Sunday afternoon.  Figured I should go while he was still mildly sedated.

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