I scheduled the procedure to kill her salivary glands. I can't remember what they called it. Anyway, we're doing it on June 2nd. So soon!
I'm mainly nervous about:
1) Intubating her. I'd like to think my kid will be as stubborn about breathing on her own as she is about everything else, but there's still the possibility that she won't want to come off the vent. Her pulm doc said when kids like her have been working so hard to breathe for so long, they get tired, and when a machine takes over, they sometimes give up and let it do all the work. It's by no means super common, but definitely a possibility. That scares me. I don't want to have to make the decision to take her off the vent or put in a trach.
2) That she'll be in pain. They said it's not very painful and only like the first 2 days are the worst. We'll have access to good meds, but it's still enough to freak me out.
3) That it won't work. I know, that's not the worst thing. We'd just be where we are right now, suctioning 40-50 times a day and having a child that spends all her waking hours gagging, choking, and coughing in between smiling, laughing, and squealing.
There are other worries, but not necessarily stuff that freaks me out. Like the fact that they are putting her under to do this. What if she doesn't handle that well? Should I revise her DNR to include situations that might happen while she's under? I don't want her recusitated if she's crashing, but what if her heart rate is just hanging at 40-50 and some light compressions for a few minutes helps her handle it better? That's a GOOD thing right? And they said they do this in radiology to prevent hitting important nerves. Apparently it is a very low risk, but they could nick a nerve that would mess with her face muscles...like the ones that she uses to smile. Low, low, low risk, but still there. Chances are if they DID nick an important nerve, the wouldn't do it to both sides so worse case scenario is she'd have a cute, crooked smile right?
But I'm not hesitating on this one like I did with the botox. We HAVE to do SOMETHING because she's getting worse and it IS affecting her quality of life. And this does sound more promising than the botox. I never did understand how the botox was supposed to work. You inject stuff in there that does....what? Paralyzes the glands? Or tries to? I don't know. It didn't work. This procedure, they are actually going to kill the tissue. It sounds much more effective and permanent. But I still don't want to get my hopes up. Our only option after this is true surgery, when they actually go in and mess with stuff. And it's brutal and painful and she'd be inpatient for a while. With the radiology procedure, as long as everything goes ok with the anesthesia, we'll be going home the same day (I'll have a bag packed and in the car just in case).
And just because I hate to do a post with no pictures:
I'm being generous by putting this up simply because I LOVE how happy Charlie looks in this picture. So be equally generous and ignore my unwashed hair please. :-D
And because I haven't posted one of Adrian in forever and I've *seriously* slacked on his blog: