Angelina's Journey
Granulomas are no fun
Months later
Maintaining
And now we work
Not Great News
G-tube feeding and seeing the lip
Surgery day
GI study
GI study
Snag in the plan
We have a plan
Slightly mistaken
Holding pattern
Tough few days
Tough few days
Tough few days
Hanging out
Sleep study
Well
A plan. We have a plan
Still
Maybe next year
Another day, another .... Nap?

Back

Admitted again

September 02nd, 2019

Angelina decided to close out August with a bang. Ever since returning to rehab after her last hospitalization, she has been having random desats, with no obvious causes. So on Friday they decided to send her back to the hospital since that's where the doctors that can figure it out are. So she was first put into intermediate care (yay, a step up from intensive care). ENT scoped her, and saw nothing. Pulm said her lungs seem fine. Cardio didn't really have anything to add. So now it's time to see if this is a neuro thing. They had her on an EEG overnight to see if maybe the desats were subclinical seizures. Neuro didn't really think it would be seizures because she's done the desatting for a while, and had a negative EEG in the past. No seizure activity was found. She did have a couple more desats while in intermediate care, so they moved her up to ICU Saturday night. She was kept there through yesterday, and should be moved back down to intermediate sometime today. 

There were some concerns that maybe her SCI from the stenosis was affecting her diaphragm and that was causing the issues, but that seems unlikely, because she is mechanically ventilated. I also asked if there could be hypoxic brain injury from all the times she has desatted, and the fact that she was without oxygen for an unknown amount of time at birth. Neurology said that this also shouldn't be the cause, since she's on the vent. 

They also did blood work, and respiratory virus panel, and cultures. All of which were negative. She did have a fever that went higher even after giving tylenol, but I think that was more environment based than actual fever. She always has a fan and is undressed if she's feeling warm. The room she was in had no fan, was hot to me, and she was dressed in a gown and thick socks. 

At her last hospitalization, they lowered some of her vent settings, and she was fine while still inpatient, but once she got back to rehab, desats were happening relatively frequently. So this time, they have put those settings back up to where they had been. So it looks like that may have been the answer. I understand the urge to wean her vent settings, but she's probably not ready for that. 

I have a pet theory, that it may be behavioral or emotional. But I'm going to wait and continue researching until we find out whether or not changing the vent settings was the solution.
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