Sunday, November 12, 2023

Wrong Direction

He's on a lot of support, but he's stable (with the supports). He's currently on Precedex for sedation (but not Ativan) and the hospital vent with higher settings.  He didn't need nitric oxide, although we're giving his heart meds every two hours (it's usually every six).  After a couple hours, at 100% oxygen, he brought his sats back into his normal range, and over the course of the night, he weaned to 50% oxygen and a little down on his sedative. We haven't had any more bleeding. This part is HUGE! He is fevering, again.

I've never seen blood like that from him. In the past, if he bled, it quickly decreased and would often have clots. This didn't. It increased. Every time he coughed, he'd cough up more than the time before, and there were no clots. All frank fresh blood. 

We didn't suction outside of the trach. No way we wanted to increase any of this, so we only suctioned out what he brought up on his own. 

He'd had a bronchoscopy earlier which was not pretty. We couldn't see active bleeding, but that tissue was angry and red and swollen. And then then the bleeding started. His sats kept dropping. I know I saw 47%. I seriously thought he might code. 

He's getting some steroid drops into his trach to help calm it and the doctor used a somewhat new treatment to try to stop the bleeding. Tranexamic Acid (TXA)  has been used to control bleeding for years, but using as an inhaled treatment isn't that common. But since that's where the bleeding was, and we needed quick control, we tried it.

And it worked. 

So grateful.

Tuesday was a bit rough. In fact, that night I slept in my clothes expecting that we'd end up in the PICU again because we were on 15 liters of oxygen, which understandably makes the floor nervous. I mean, that's as much as they can deliver. There is no wiggle room.  

He did transfer down to the PICU Wednesday morning. And looked great. (Crazy kid.) There was talk of returning to the floor. He needed more oxygen again. Goal and plan was still for home Monday evening after finishing the IV antibiotics. So maybe we'll go to the PICU overflow. That was yesterday morning but didn't quite get arranged. And then yesterday evening...

Good thing we didn't go. What was challenging here would have been doubly difficult there. And we would have come back. Today's plan is to try to wean some of those supports. We're turning down his sedatives and spacing out his heart treatments.  If that works, we'll reduce his vent settings.  

And I have no idea when we'll get home. 

"Even miracles take a little time."
- Fairy Godmother, Cinderella

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