Monday, September 11, 2023

The Plague, Sigh...

This kid can NOT catch a break! 

Was out of the hospital for almost 9 weeks, went to three days of school and back in due to his "cranky brain."

Was home for 4 days and back for another week with a bad tracheitis (that I almost didn't recognize in time). 

Home for a week, made it to his brother's wedding reception, went to school. 

Happy, smiling, playing, laughing!!

Until Sunday. 

Sunday he was super tired, and a bit junky. Like he really slept most of the day. He also had a few of his cranky brain spells. (I really don't know what exactly to call them. They're not seizures and "neurological irritability" seems kinda long.) A couple people we know mentioned they had just tested positive for Covid, so it was on my mind.

Um, yeah...

Now it's very much on my mind. 

I debated about testing him. I mean, other than super tired and a bit of junk (really not that much), the only other reason to was that I've been hearing about it being on the rise again and he goes to school with a lot of other compromised kiddos. I did NOT want to put them at risk.

Fortunately, we caught it at the very, very beginning. His nasal swab was negative, but with a trach, you can get a better, more sensitive sample through there.  I mean, the trach stoma is much closer to the lungs (where it lodges) than the nose. That one had a faint but definite line...

What a blessing to have a friend who is also a doctor, who also knows Aaron really well. I wrote a text and she called about the time I pressed "send." I was trying to be rational, but I really don't know what I would have done without her. When you spend 3 1/2 years trying to avoid something...  When you spend 13 years keeping an "incompatible with life" kid alive... When you've already had "the talk" a few times over the past year alone... Well....  It's his life, our life, but I love it and I'm not ready for it to change. 

We spent the next half hour on the phone going over any possible med interactions and trying to find a 24 hour pharmacy. 'Cause you know it happened later on a Sunday night, of course.  

So now he's on antivirals and we've got an extremely low tolerance for any decline. The good news is that other than still being tired and having a cranky brain, he's doing really well.  Sats are high, heart rate and oxygen needs are somewhere between super awesome and normal for him. The rest of us are currently testing negative and we're taking all the precautions we can. 

I'm hoping and praying that he sails through this and is back in school next week and the rest of us don't get it. William is swamped at work, Michael is in the middle of football season, and I just started a new job. I'm loving it, it's amazing, but it's also overwhelming and not such a great beginning if I have to take a week off after only a few days. 

But mostly, I really need him to kick this. We have been the recipient of so many, many miracles over the years. But as always, I'm greedy. I want more. We need our bug. 

"Miracles are not contrary to nature, 
but only contrary to what we know about nature."
- Saint Augustine

Monday, September 4, 2023


We're home!

He's happy!


There will be some adjustments and need to watch things differently because he can no longer use the antibiotic that's worked to keep him out of the hospital for probably the past eight or ten years. 

But he's here, healthy, and playing fun games.

Tonight is Matthew and Kensey's reception, and we're celebrating life with them. 

“The best journey takes you home.”
Author unknown