Well I finally broke down and we did the botox in her salivary glands. I wasn't thrilled about having to put her under and intubate her, but it seemed like our only way, so I tried not to think about all the "what-ifs", especially "what if she won't come off the vent?"
So we took her on monday and she was so thrilled to get out of the house and into the car:
So we took her on monday and she was so thrilled to get out of the house and into the car:
Isn't that the best smile EVER?
We had to wait a while but she was happy the whole time and even napped a little.
Then the anesthesiologist came in and said her pulmo doctor wrote him a letter that said to please, PLEASE try to do it without intubating her because it truly was a concern, not just something we made up in our heads to freak out over. LOL Ok, he didn't quite put it like that, but it was nice to have a doctor say it so I didn't look crazy. So he agreed to not put her completely out and try to do it without intubating. Yay!
They were able to do it and she didn't react at all to the gas stuff they gave her so she woke up right away and was acting pretty normal, all things considered:
It took her a little while to get back to her usual smiley self, but at least she wasn't upset.
It's supposed to take 3-5 days to notice a decrease in her secretions, but her nurse swears she has less already. It's hard to tell because it could just be a coincidence that she had a good day right after the procedure. We will see. I'm hoping it helps even a little because this poor kid is constantly choking these days unless we position her "just right". And Charlie doesn't always like to be positioned "just right". She likes to be able to look around and see everything. LOL She'd rather be suctioned constantly than to miss out on her surroundings and let her secretions drain.
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