Thursday, March 2, 2023

The Same-Day Surgery That Wasn't

Beep, beep, beep, beep...  

It keeps on going, relentless, sometimes higher, sometimes lower.  If the tones (and sats) drop enough, that decreasing timbre is joined by a higher alert alarm as his sats drop below acceptable limits.  If they continue, the alert alarm increases: in volume, frequency and stridency.  

Beep, beep, beep, beep... in rhythm with his heart beat but the tone is determined by his oxygen saturation.  

It becomes background noise, and I almost tune it out, until it drops lower, and the vent chimes in, too.

Aaron and anesthesia are not friends. It tightens up his already stiff lungs and makes asthma and pulmonary hypertension worse. 

Pain doesn't help. 

Soooo, long and short, our same-day surgery isn't. 

On our way to Primary's this morning.
I suspect we'll go home tomorrow, but certainly not tonight. We get to a good spot, we'll hang out in the 90's!!  And then he gets uncomfortable, tight, and decides that breathing well isn't high on his priority list. 

Beep, beep, beep, beep...

But those sounds are the sounds of life, so it's okay.  We'll get through it. He'll go home.  

The good news is that the ears are actually looking okay, and the granuloma inside is trach that I discovered just this morning got taken care of as well.  He's not rupturing his ear drum. Instead, he's got kinda a hollowed out bowl-shaped space down in his ear where debris is collecting.  Most people's ears are designed to self-clean, to push all that junk out. That's why we end up with wax at the opening of our ears. But because of this anomaly, it collects down in there, becomes irritating like a hot spot that your shoe rubs on your heel, and then starts bleeding.  

He'll probably have to have it cleaned out every three to four months, but now that Dr. ENT knows what it looks like in there, we can probably do it in the office.  Yes, Aaron will HATE it, but it also means not dealing with general anesthesia.  

You know, the thing that's keeping us here this time. 

So we got some good information. We know what's going on. And it's not repeated ear ruptures or a cholesteatoma.  And once he gets rid of the after effects of the anesthesia, we'll head home, whenever that happens. 

It's Trisomy awareness month. If you've known us very long, you've heard of it!  But here we go again. March, 3, Trisomy. And I was reminded again the other day how much we all need each other.  As I speak to other moms and realize how much we moms with our non-medical background but our fierce love for our children have impacted the world, I am amazed.  We have serious skin in the game, and what affects one, affects all.  We share the victories and joys and resources, and the pain and absolute anguish as well.  

Trisomy awareness -- Together we can, and will! 

“Unless someone like you cares a whole awful lot, 
nothing is going to get better. It’s not.” 
– The Lorax

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