Rough Day

Playing with music therapy on Monday

Aaron is having a rough time this go around.  

Yesterday it seemed like things would be pretty straightforward.  Kinda a “lather, rinse, repeat” thing.  Been there, done that, bought the t-shirt.  You know, same old same old.  

Today, not so much.  He’s been tired, sleeping quite a bit, and when he’s not sleeping, he’s not satting well.  As in, we’re back on 100% oxygen and spent most of the day hanging in the mid-70’s.  A couple times we dipped into the 50’s and 60’s.  Yeah, not so great.  

He seems to be moving good air in his lungs.  He’s not wheezy, although albuterol does seem to help, briefly.  They repeated the x-ray with the same results, a good thing, it opens up the possibility of using steroids on him.  

For now, we’re increasing his support on his ventilator.  If that doesn’t work, we’ll change to a bigger vent.  

But it’s kinda hard.  He’s happy, don’t get me wrong.  We’ve still got smiles and all his hijinks, pulling off leads, teasing, etc.  But still...

So what did I do?  I escaped briefly and had dinner with two other moms.  Two moms who are facing the same long-term outcome.  And we talked and laughed, and tried not to cry.  Gotta love people who just “get it” ‘cause sometimes, that’s the only way to keep from losing your mind.  (Okay, maybe too late for that, but you know what I mean.). 

Anyway, we’ve had the “talk” again.  And I “talked” as well.  There is no mistaking that we are still a full code, that if he doesn’t respond to the vent settings or the bigger vent, we’ll escalate from there.  There will be no giving up.  This kid still has way too much life and joy and goofiness going on.  We’re not giving up, no one is.  

But sometimes, sometimes it’s hard.  

"If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward."

—Martin Luther King, Jr