Monday, November 16, 2015


Today's been a better day in some aspects, and not quite as good in others.  That's okay, the better part outweighs the worse by a long shot.

Yesterday and through the night, Aaron wasn't using much oxygen.  We all thought he was probably ready to make the jump to his home ventilator.  But what worried me was his demeanor.  And while there are a lot of new staff members here, there are still enough older ones to know what he's usually like, and they didn't like it much either.

See, Aaron truly enjoys the hospital, and especially the PICU.  He laughs and plays and there's always someone new to see.  He thinks it's totally a party place.  Last time we were here, he didn't even sleep for more than an hour or two at a time until we'd been here three or four days.  Not this time.

Saturday night, all day yesterday, and last night he slept.  And if he wasn't sleeping, he was lethargic.  Not interested in playing, not interested in smiling.  And not happy.

So while he wasn't needing much oxygen which was good, he wasn't himself, which was bad.

This morning at rounds, he was only using 35% oxygen, way, way below what he had to be to go back to his home vent, so they wrote up the orders to change.  He was also just waking up.  Um, before the doc moved away from the room, he'd been cranked up to 60%.  Oops.

And he's been between 40 and 65% all day, usually right around 50%.  BUT he's been happy and playing.  Making cute sounds, playing hide and seek in the sheets.  Music therapy came in and my non-verbal kiddo convinced them to leave the jingle bells behind.  You could hear him through the whole unit for a few hours shaking them.  It almost sounded like the Salvation Army guys at Christmas time.  And he brought a smile to many faces the same way they do, too.

So if I get to choose, I'll choose happy boy using too much oxygen.  'Cause we can always work the oxygen down.  His labs have come back and he's growing a new bacteria this time, strep pneumonia, sibling to the strep throat that so many get.  And as far as bacteria go, that's an okay one.  We can use a fairly light-weight antibiotic to treat it, so he's now off his big-gun IV antibiotic.  It's just going to take some time to get back to where he needs to be.  But that's okay.  He'll get there.

This morning I woke up to the news that one of our Trisomy sweethearts went home.  My heart is aching.  Two years older than Aaron, she has been such an inspiration to me.  Her mother calls herself blessed for having had that time, but I know she's brokenhearted, too.  We treasure these times, these moments we're given.  It always ends too soon.

I'm holding a teardrop for a friend
Until his heartache and misery end.
~Terri Guillemets

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