I am stuffing my face with Tim Horton's raisin scone, thinking I could never give up white flour or sugar. Then again, if I did, I would probably be able to fit into these jeans without feeling self-conscious over my muffin top. Hmmm...
Ellie had a fine night, although she kept ringing off her breathing rate monitor all night long. She was breathing below their recommended 20 breaths per minute, usually around 16, but her sats were fine, and her heart rate was fine, so I don't think it's really an issue.
This morning, she is flushed again, and snotty again, but I want her HOME!!! I don't want to keep her here, I want to go home. I told Dr. D that I want to go home, but she said that it depends on Ellie. They're apparently admitting a child today who has the same thing as Ellie, fine during the whole day, except for the morning when they struggle with secretions.
It's possible they will let us go home, if we start Ellie on nebs to loosen up her secretions. We have easy access to a nebulizer at the local pharmacy, and it doesn't cost much to rent it. I have the mask, I even have the Ventolin!
Dr. D was just in, they (all the lead docs), are going to have a meeting about Ellie to decide what happens. Maybe we can go home, maybe not. They're trying to put a rush on the suction machine, so maybe that will help.
At the same time, they're calling endo, to talk about whether something else is going on, because Ellie's airway is not typical PWS. The only other airway issue kid that I know who has PWS, also has other genetic stuff going on. It doesn't make sense that Ellie is strong everywhere but her airway. We fixed the fat issue, and her overall tone has improved, so they're stumped.
They want ENT to see her when she is well, but it almost sounds as if they want that sooner rather than later. Who knows!
Waiting in limbo...
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