Sunday, March 13, 2022

We're BaAAack

Wheelchair tune-up on Tues.
Yeah, kinda says it all.

Aaron's feet are kinda wonky right now.  When he was born, he had a vertical talus, also known as rocker bottom feet.  They were the opposite of club feet, angling up and out.  Sometime over the past month or so, probably when he was sooooo sick, they started curving in and down.  He started wearing his DAFOs (braces) to help them straighten back out but that may have caused pain.  Who really knows?  They didn't create pressure markings on his legs or feet, but it was challenging to get his feet in.  

Anyway, by Thursday, he acted really pained anytime his feet were touched, especially his left foot.  I wondered if there was some sort of injury.  We quit using the DAFOs and let him rest.

Saturday I decided maybe he ought to be seen, but mid-day (when I thought I'd take him) he was starting to look better, so maybe not?  (There's a LOT of second guessing going on here.)  Got some stuff done that morning and even got a nap in (YAY!).  Woke up from my nap and thought, we need to go in.

It was kinda weird.  I woke up and thought, "going to make the pizza I've been planning to make since Monday and then take Aaron in."  There wasn't any urgency or anything.  It was almost like, "gonna have dinner and then we have a soccer game, or a kid's concert, or whatever."  Just a matter of fact thing.  

Took him to our local ER, American Fork, because I figured it was feet and they could at least tell me what was going on, and maybe even fix it.  They may have.  I mean, once we got x-rays, he started moving them.  You know, like when you take the sick kid to the doctor and he starts acting fine just before the doctor comes into the room.

But they also did other x-rays and ran a bunch of labs.  In part I think because here's this incredibly complex kid, let's make sure we don't miss anything, and in part because we were going to do labs anyway on Monday.  Two days early isn't a big deal.

Yeah, about those labs...

Kinda wonky.  Kinda really wonky.  White blood count of 18.9 (normal 4.5-13.5), platelets of 263, which is normal but not really for him, and a jump from 55 the week before.  He usually hangs out about 130, normal is 150-400 and his highest ever was 188.  There were other markers as well.  

Now, it's possible that these are all related to pain and storming.  But it can also be indicative of a bad infection.  Guess where he is now?!?

Yep, in the PICU.  He also decided that he really liked the oxygen more.  He's hanging out on an ICU version of our vent using a bit (not a lot) more oxygen than we can deliver with our home vent.  He's also not sleeping, like at all.  I told him that he has to sleep before I'll hang up his toys.  

I told him when I first started working on prerequisites for my master's program that he had to behave.  I couldn't do school and hospital, and he listened at first!  I mean, really!  He took a trip a week after I finished those initial courses.  And last semester he did really well!!  This semester?  Well, it's almost starting to feel like that really rough first year.  Except that year I only slept in the PICU.  I never slept at home, I was too afraid.  I've told him I really like sleeping in my own bed now.  What a monkey. 

This kid ... 

I can't even.  

But hey, he's here.  He's still with us.  And that's so much more than so many other parents have.  We'll just keep keeping on. 

Do what you can, with what you have, where you are. 
— Theodore Roosevelt

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