Saturday, July 15th

That's an imaginative title, isn't it.  Sorry, the creative brain cells appear to be AWOL at the moment.  But here's what's been going on up here.  We've had a wonderfully boring day, over all.  Aaron did pull a couple of big desats a few hours ago, but once we got him suctioned out well, and got all the junk out, he's done fine since then.  His PICU attending is a friend from a previous visit.  She came in briefly, said "Hi", admired how big he is and asked about the other kids.  When the attending spend more time in social visiting than hands on, you're in pretty good shape.  Which was fine with me.  From a few general comments made by some of the PICU staff, I gather that it's been a rough couple of days in there.  I know it's hard on them, too, when a child is really suffering.  Anyway, here are my notes for the past day or so:

Resting quietly.  Notice the "no-nos" on his arm (the white covering
with blue & red decorations).  He's been quite active and trying to
rub his mouth and nose.  We really don't want to cause any more
trouble for the site, so he has to be hands off it for a few days.

7 am. He had a quiet night last night.  He’s still not on his feedings, so they’re still using morphine and Ativan for pain management.  There doesn’t look like there’s any issue with his blood.  At least his numbers came back in the normal range and none of the other trisomy moms have run into clotting issues.  I’m sure if there were some associated with this, someone would know.  I also went through the T18/T13 medical text chapter by Dr. Carey.  In it, he goes through all the systems with evaluation and treatments for conditions found.  He even covers social aspects.  But he doesn’t mention any blood disorders.  So who knows??

8:30 a.m.  Aaron is much more active this morning.  I don’t know that we’ll be going home today.  We haven’t even started feedings and he’s looking pretty out of it.  Blood gas yesterday came back really good, but he was still heavily sedated.  We’ll need to get another one before we go to make sure his new vent settings are appropriate for him. 

6:30 p.m.  We’re now on the floor.  Aaron started on his formula again early this afternoon, but we didn’t want to overwhelm his stomach, so we started slow and are working up to his full amount.  We’ll probably get there sometime around the middle of the night.  Then, if everything still looks good, we should be on our way tomorrow. 

There may be one glitch.  Earlier this week I heard a sound in his heart that I hadn’t heard before.  Dr. Kalm, his attending on the floor, also heard it before transfer.  It’s an extra S1 sound.  He couldn’t remember right off the significance, or if there was significance associated with it, so he’s going to check with cardiology.  If nothing else, the fact that it’s new warrants a note. 

But for now, he’s resting peacefully, with two antennae in his head.