Wednesday, November 1, 2023

Halloween in the PCIU (Kinda Scary)

He's better. Not ALL better, but still better.

There are still steps before he can come home and they'll probably take time, but he's on the right path.

And if you've got medical trauma or PTSD, please stop reading now. I've got a lot to unpack here.

When I first brought him in just over two weeks ago, this is what I was trying to avoid. Or what this almost was, or something...

I could see what I thought was probably a tracheitis setting in and we had nothing at home that would help keep it at bay since he's resistant to tobramycin. So we came in, and we thought (sorta) that it had been treated. But in the back of my mind was this niggling voice that said, "pulmonology said that if he got an infection, our only option was two weeks of IV antibiotics." TWO, not one. But I didn't speak up. I don't always do that even though I know I should. And we all know now that it wasn't Anxiety talking to me, although she does have plenty to say. 

We're not completely sure that's what it was/is, but that's because this kid has so many different things that can/do go on it's hard to pin down just one. 

Yesterday was hard. He was on 100% oxygen on an ICU vent. The vent was a step below what he usually ends up on but much more powerful than our regular one. We still struggled, even with higher support settings. He didn't want to come up even to the mid 70's on his sats.  His blood pressures were low so they started him on norepinephrine. 

I had visions of following the path we were on back in June, just before his birthday. It was not good. 

And the doctor suggested I not leave the hospital for at least the next couple of days. 

That is NOT a good sign.  

My Mandalorian, the strongest,
bravest guy I know. 

Later last night we switched him over to the more sensitive ICU vent and this morning we added in inhaled nitric oxide (INO) and then gave blood. For some reason, his red blood cells have really struggled the last few months.  And he's fevering.

And we're seeing good things. He spent a couple hours up in his wheelchair (which is good for his lungs.) His oxygen has weaned from 100% to 50% and his INO from 20ppm to 5ppm. We're going to hang out there for a bit without making changes. He's satting in the low 80's, which is just fine for him. They've stopped the norepi. He's still on IV antibiotics and we should know more about exactly which ones he needs soon. 

He's doing better. Between the blood and antibiotics, I'm hopeful that we'll continue the upward trajectory.  I'm hoping we're going to avoid full-blown sepsis. 

They're running labs on his blood levels, hoping we can figure out why he's needing so many transfusions. It's likely that he'll need to start getting weekly subcutaneous injections, but they'll teach me how to do them so we don't have to come in. I'm a little nervous, but hey, we already do g-tubes and traches and a bazillion meds, so one more? Why not? (I guess.)

I'm hoping we're done with the tricks and on to the treats. 

"I'm not leaving my fate up to chance."
The Mandalorian

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