Tuesday, October 6, 2020

Pixie Dust


It’s happening, it’s really happening! 

We’re getting sprung this morning (or afternoon).

See that dark red vial of “stuff”?  It’s packed red blood cells, and I’m convinced, a bit of pixie dust.  

Aaron is doing sooooo much better.  In fact, if I hadn’t had to work last night, we probably would have just gone home. But by the time we made it through the 24 hours post-transfusion, there wasn’t time to get us home before I was working.  So he stayed the night one more time, but this time on the floor.  

I called the hospital at break and he was awake and playing on ten liters.  He was still on ten when I got back about 3 am, but asleep, so I asked if we could turn him down.  He ended up on 4, FOUR liters!!  And there he stayed until he was getting breathing treatments this morning when he came all the way up to FIVE!!!  


So we’re outa here.  He’ll be at home for at least the next few days and then after that, we’ll see.  He’s continued having afternoon fevers and those may stick around for the next few weeks.  In a normal year (what’s that anyway?) it’s not cool to send a kid to school with any kind of fever.  And this year?  Yeah, just not happening.  

But that’s okay.  We’ll be at home where we can see family again, I won’t have a commute, and I can fall into bed just after signing off work.  A real bed, you know, not the chair that folds down that has been masquarading as a bed for the past 2+ weeks.  It’s good, it’s very good.

“All you need is faith, trust, and a little bit of pixie dust.”

Sunday, October 4, 2020

Inching Forward

He’s doing a little better, or at least his labs look that way.  They’re all coming back absolutely pristine, including inflammation markers.  Those go up if the body is stressed at all, and they’re currently at 0.  White blood count has come way down, well into the normal range now.

He’s still mounting a fever in the afternoons, and the oxygen needs go up in concert with the fever.  The only thing that anyone can come up with now is that it may be an antibiotic induced fever.  Frankly, I kinda like that answer. 

His hematocrit is a bit on the low side, especially for a cardio kiddo, so that very dark line in the picture is a unit of blood that’s currently draining into him.  (So now he’s a vampire??  I guess he’s not drinking it so maybe not.)

Anyway, without anything else that can really be done for him, we’re probably heading home soon, probably Tuesday morning, possibly tomorrow.  We’ll see.  Each time he gets sick like this, it’s harder for him to fight it off, fight back.  But it looks like he’s done it again this time.  

And this weekend was General Conference.  I love the talks, the comfort, the inspiration.  And we’ve been here before for several.  But I think we’ve at least watched more at home than we have here.  With everything going on, I wasn’t able to listen as well I would like.  So grateful for the technology that let’s me go back and listen again, over and over.  It strengthens me, inspires me, and helps me to move forward.

I assure each one of you that the Lord knows you, 
that He is aware of your concern and anguish, 
and that He loves you — 
intimately, deeply, personally, and forever.
M. Russell Ballard

Friday, October 2, 2020

Shooting in the Dark


Just a quick update, and a plea for ideas if you’ve got them (especially trach or Trisomy moms).

We’re here, still, for who knows how long.

He’s completed his bactrim antibiotics (high powered, broad spectrum, should get anything antibiotics), labs look good, and have continually trended in the right direction. White blood count is pretty darn normal at this time.  We’ve repeated labs ad nauseum, x-rays, repeat viral panels, just sent (another) protected trach brush.  Cleaned out and looked at his ear drums. Looked at urine, too, and his BMs.  Everything looks good.

But not only has our progress stalled, we’re moving backwards.  Oxygen is back up.  Fevers are returning, 100-101 for the past few days, but 102 today, pretty much afternoon into nighttime.  Last night he acted like he hurt, he was crying.  The team did a complete head to toe exam and couldn’t find anything.  He’s played a little today, but not much.  We’ve looked at everything we can think of.  

And yet, here we are.  It’s been two weeks since he started having fevers (almost to the hour).  Sigh...

Our minds have the need to know. When we don’t know, we make assumptions —
they make us feel safer than not knowing.  And we are pretty much
always making assumptions. 
Miguel Angel Ruiz