Well it's day 6 and so far...nothing. :-( We're suctioning her just as much and she's drooling just as much. You'd think it would help a *little* at least. Boo.
We may or may not discuss the much more invasive and painful route of surgery to seal off the glands. On one hand, she's used to the suctioning and it doesn't seem to bother her and the surgery is brutal. On the other, maybe she'll aspirate less and get sick less if she has less secretions, even if we have to put her through some pain to get there.
I hate decisions.
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I'm sorry... I was hoping so much that it would work for her.
:(
That stinks. I'm glad they didn't have to tube her for it though. We tried the injections with Kylee around 1 1/2 years ago; didn't notice a bit of difference unfortunately. But they didn't sedate her at all, or give any pain meds either - isn't that horrible? I didn't know other places did at the time, or I wouldn't have done it there! Have you guys tried Sal-tropine? That works so much better than anything else for us. We give 1/2 tab every 4 hours during the day and Robinul at night since she's less boogery when she's asleep. Had a bit of the side-effects at the start (increased HR and red blotchy skin) but none anymore.
They've mentioned it but said they don't normally give it to kids so young? I'll definitely bring it up before doing the surgery. They said her face would be swollen and black and blue for at least a week. Not good!
How bad are Kylee's secretions? I'm finding out there's a difference between kids who just have a drooling problem (botox seems to work fine for them), those who drool some and choke a little, and those who can't seem to keep it out of their lungs.
Charlie is the third one. She chokes and coughs it out, but she's not nearly efficient enough and it just drains into her lungs constantly. The few people I talked to that have kids like her said it didn't help. So I'm thinking if Kylee is like Charlie, that will help me figure out what'll work before I have to throw a fit in the pulm's office to get meds. LOL
I wouldn't do the surgery. I cared for a little boy for two years who had the surgery done. He drooled and had just as many secretions post-surgery as he did before. We used Sal-tropine and Robinul with great success
It sucks that the botox didn't work...sorry you have to make a tough decision.
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