Sunday, February 20, 2022

Still Learning, Still Here

EEG, he wasn't too impressed.
We hoped to be home by now, but not quite there.  

It does look like autonomic storming.  This is a diagnosis of exclusion.  Basically, we go over everything, and when none of it pans out, you start wondering.  Even his EEG showed pretty typical patterns (at least for him).  Over the past few days while on neuro medicine, his symptoms have subsided.  He continues to fever, but it seems like a bouncing ball, generally bouncing lower each day.  Fingers crossed.  We're hoping for home tomorrow.  Fingers AND toes crossed.  

We tried to reduce his medication yesterday.  Um, no go.  High fever again along with higher heart rate, respiratory rate and oxygen needs.  We gave him rescue meds along with his maintenance meds and slowly he came back to where he should be. Hence the decision to stay one more day.

There has been soooo much to learn!  Today we talked about how having to use his rescue meds multiple times over a 24 hour period wasn't out of the norm, but that if we had to use them frequently over several days, it was time to make phone calls to his team.  The biggest risk of his medication appears to be sleepiness and perhaps a diminished breathing drive.  Kinda a big deal for most people but since he has his ventilator that breathes for him, not such a big deal.  

The good news is that even going back up on his dosing AND using his rescue doses, he was still awake for a while this morning and playing with his toys.  I had showed him a really sweet video his school put together for him wishing him well and he was very interested and interactive.  He is loving his movies and stories.  

He's not quite as alert and silly as he usually is, but I'm hopeful that those aspects of his personality will come back. 

I am in awe of this little boy.  He is such a fighter!  We are so blessed to be able to know and love him. 

"Be a student of life and a lifelong student." 
~Terri Guillemets

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