They See Him

I'm afraid I'm losing track of everything that's going on, but at least we're moving in the right direction now.  

He did end up on nitric oxide Sunday but weaned off his sedatives pretty quickly.  He couldn't continue getting his heart med every two hours (and he started demanding it every hour!) so nitric it was.  He also needed that second dose of TXA Sunday afternoon, but the bleeding wasn't quite as bad, maybe because we had the med bedside instead of having to request it from pharmacy.  

On the plus side of things, we did another bronchoscopy today and it looked really good! It was back to pink and not swollen, and when he coughed there was a little mucus but no blood, and no color to the mucus (TMI?).  He's also been playing today.

All really good things. 

His fever curve has gone up (and up and up). At one point he was 40.2 (104.4) but we're trying to keep him comfortable with Tylenol, Motrin, and ice packs. (I don't think I would be "comfortable" with ice packs. Makes me cold just thinking about it.)

Anyway, the thought had been that perhaps the fevers were antibiotic induced so we stopped those on Monday. He only had one more dose due anyway. (Remember, my plan was to take him home on Monday after finishing the antibiotics.) But that little three letter word: had...  

Moving rooms. This kid doesn't travel light.

Yeah. Infectious disease is now involved because we just haven't been able to figure things out, and they want a bunch of other tests. Most are very unlikely: mumps, Epstein-Barr virus (both negative), and some others. They also wanted an abdominal ultrasound. Basically, trying to rule out everything. I mean, their job is to look for the weird, uncommon issues that most people don't think of.  

And that abdominal ultrasound? 

1. Multiple echogenic foci within the spleen can be seen with developing microabscesses given concern for occult infection.

Yep, sick spleen. Several pockets of infection. But they're small, and it's better to try to heal the spleen if possible than to do without a spleen. And much better for Aaron to not have to have surgery. 

So the long and short of things (as they stand tonight) is that we're going to be here for a while longer. He's going to need more IV antibiotics and I don't know for how long. We don't even really know how long this has been going on. It's possible this is why he's struggled so much lately. They're also going to do another specialized blood test where they send it to a lab (in California?) that will remove all human DNA and see what's left, just to make sure he doesn't have a micro infection in his blood that might be a factor. 

It is what it is.  I'm grateful for a team that takes such good care of him, that keeps digging, that sees him, not his diagnosis or handicaps. 

And now, I'm going to bed, because I still have to go to work tomorrow. Just like I count on people here, I have people counting on me. It's good to be needed. 

“I’m not a superhero because I parent a child with special needs...

I’m the sidekick to my superhero.” 

– A. Krause Studio