Friday, September 18, 2015

PTSD . . . Yep, it's Ugly

I HATE PTSD.  It's awful.  It changes my brain, doesn't let me focus, sleep, function.  It can come out of nowhere.

And it's back.
Thursday evening
Tuesday afternoon

Aaron has been back on his vent trials.  The past few days have been amazing.  Off almost the entire day.

Plus, our medical equipment company no longer provides the filter with O2 connector we've been using, so we had to switch to a different kind.

Down side is I no longer have a "door" I can open and suction through.  Up side is the oxygen is firmly connected, and with the addition of a small rubber band, I can make it so he can't take it apart.  Something he regularly did with the one I had been using.

But yesterday, his regular school nurse was out of town and we didn't have any other.  So he stayed home.  And the vent trial didn't go so well.  By 2:00, I gave up and put him back on his ventilator.  By 3:30, he was still on a lot of oxygen.  And by 5:30, I knew things were up.

He was tired, almost lethargic.  His heart rate was up, much higher oxygen needs, starting to pull gunk out of his trach.  His brothers got pretty grossed out.

And BOOM, there I was again.  Right back at Christmas time when we lifeflighted.  He'd been sick for a couple days, but we weathered it at home.  Got better, but then started acting "off," more tired, more junky, and then spiked a fever.   I took him into the local hospital to see if maybe he was developing a bacterial infection.  Nope, but while there, he decompensated (went downhill) really fast.  The chopper was called in and we spent the next several days fighting to keep him alive.

It was scary, it was ugly.  And last night I was right back there again.

He did develop a low grade fever, and we pulled lots of nasties out of him.  But we've also really ramped up his breathing treatments, and his wonderful primary nurse was here.

William asked me what I thought our chances of going in were as we went to bed.  I told him that at the beginning of the night, I'd have put them at about 95%.  But since he'd settled down and his fever didn't progress, I was going to say closer to 75%.

Well, we're still here at home this morning.  But the hospital bag is all packed.  He's still higher on his oxygen and his heart rate and breaths are faster than normal.  But he's still well within what we can support at home.  We'll just have to see what happens once he wakes up.

But if I'm short-tempered, easily distracted, and can't focus, you know why.  I guess the thing to be grateful for is that I'm still being thrown into this.  I can't even begin to wrap my head around what happens when it's all taken away.

And really, can't he just leave these rhinos alone and catch an elephant instead?

A new wound makes all the old ones ache again. ~Mignon McLaughlin

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