On saturday I got a call from Charlie's nurse that she desatted very badly. She wasn't sure what happened. She put her on her belly for some tummy time and when she checked on her, her lips were very blue. She threw the oxygen on her and put the pulse-ox on and it only read 69. We've been lenient with the pulse-ox because Charlie has been doing so well on room air lately. And she always does *better* on her tummy because her spit drains out rather than falling into her airway.
Anyway, it took a little while to get her sats back up and she was sleepy for a while. But then she was acting perfectly normal.
At first I thought maybe she got her face buried in the blanket/floor. It seemed like the most likely scenario. But later that night, Charlie spiked a temp and her heart rate went to over 200. I took her to the ER and her xray showed a "new" spot (they compare all her xrays to the old ones to decide if something is just how Charlie is, or if it's actually an infection). The doc said he couldn't say 100% that it was pneumonia, but we may as well treat it and not wait for her to get worse.
So again, I'm thinking seizures. She does this when she's sick (she tends to have a lot of seizure activity during illnesses and/or fevers). But we can't SEE any seizure activity (aside from the one time I saw her jerk after her sats dropped). All we see is her sats drop, she either gets sleepy or irritable, and then she's magically fine a few minutes later. And suctioning her and putting her oxygen on seems to do nothing. She just has to come out of it on her own.
During her last hospital stay, they couldn't really see any physical signs that would cause her sats to drop. Her lungs were relatively clear and she had *some* extra secretions, but not enough to do that.
ARGH!
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3 comments:
Oh that is scary. Those are the types of desats Dakota's had for ages now and every time they terrify me, probably not as badly as they should because I've become desensitized. I know that Charlie aspirates and I'm assuming they've already done a nissen fundoplication but have they checked it lately via upper GI to see if it's still intact or has possibly slipped?
Oh man that had to be scary as crap! I'm glad she's okay.
No she doesn't have a nissen. She vomited a lot due to poor motility, but with her GJ, there's just no reason for the nissen since she doesn't reflux anymore as far as we can tell. I'm almost 100% sure it's seizures anyway. I've seen Charlie reflux and all she does is arch forward for a second. She aspirates her saliva constantly but there's really not anything we can do about that. Even a trach wouldn't prevent it.
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