Update on Aaron

Faithful pal Scout wears
Aaron's socks so they
don't get lost.

I know, lovely title.  But hey, it tells you what it is, right? So update...

He's not seizing, but his brain patterns are very disorganized. (My own brain feels disorganized...) His neurostorming, or neuro irritability have increased, and that's what we're dealing with (we think).  They actually look a lot like a pain response which is of course not fun, but he also drops his sats, often into the lower 60's.  Not cool.  But hey, at least they're not seizures!

We added on another med to help "cool the brain" and it seems to be helping. He got blood because some of his iron markers were low. And then there's his pulmonary hypertension. Yeah.... It's bad, worse than normal. We were struggling to keep his sats up so I moved the probe to his hand.  We had a 20 point spread.  Normal for him is 5-10.  (For the rest of us there shouldn't be any spread.)  So with that, we conferenced with the hospitalist and med student, the cardiologist and his fellow, the nurse, charge nurse, RT, and got his cardiologist on the phone. It was a party!  The hospitalist had already spoken to the PICU a couple times but they weren't part of the group. The consensus was that we would increase his inhaled cardio med from every 6 to every 4 hours and see if he could maintain his goal saturations. I wasn't sure he could, but was still trying to avoid the PICU. If he dropped at any time, or if anyone in the group was uncomfortable, we would move into the PICU where more supports could be added. 

I have to admit, I was hoping but not hopeful that we could avoid the transfer. 

Once again, he seems to have done it. He made it the four hours between treatments, and then five hours (because RT was pulled into another situation)! He did well overnight.  He started struggling a little bit this morning but quickly recovered, and rescuing a time or two at home is easy.  So maybe there's a light at the end of the tunnel and it's not an oncoming train! I mean, really, everything we're doing now are things we can do at home.  So fingers crossed...

We have looked at pretty much everything here. They even brought in wound care and general surgery to discuss his g-tube.  Some stomach tissue is growing up and out of the stoma and when that's an issue, the remedy is to close off the stoma and create a new one. There was also a little concern that perhaps his nissen had come undone so an upper GI series was ordered. Those usually only last a few years and it's been almost 13. Redoing a nissen is a difficult surgery for anyone. There's scar tissue and the need to undo and redo. It's rough. Take a kid who doesn't play well with anesthesia and it becomes exponentially more risky.  

I watched the surgeon's eyes widen and his face blanch when I told him what Aaron's pressures are. See, our systemic blood pressures (the force the heart exerts to push the blood around the body, what most people think of) are supposed to be about 3x the pulmonary pressures (the amount of force needed to push blood from the heart to lungs).  Instead, Aaron's are reversed. His pulmonary pressures are about 3x his systemic ones. That's BAD. Really bad. The good news is that we ultimately decided that his g-tube is working well with minimal issues and the nissen is there so no surgery needed.  Whew...

So that's where he is, where we are. He is getting more tired. Hospitalizations seem to be more often. But in between, he's loving his life, growing, playing, laughing. So we are still doing "for" him, not "to" him. He has many more good days than bad ones. His life is still good.

 "Not how long, but how well you have lived is the main thing.” 

— Seneca