May 10, 2013

Botox Results

Wellllll, I'm not 100% sure what I think about the Botox. I'm going to give it some more time before I decide but did want to update you since it's been over 10 days since the injections. What we have noticed is that she is more vocal. Hopefully this is a growing trend. Is it because of the Botox? Hard to say.

Eating wise she is still doing okay, so it would seem we don't need to be concerned about aspiration caused by opening up the airway. However we can't be sure that the Botox actually opened up the airway in the way that we hoped. I'd really like to get a look to see, and I e-mailed her doc, but I doubt they'll want to do that.

As you know Ainsley's problem areas are:
  1. coughing (especially if she's sick)
  2. crying
  3. exertion
  4. sleeping
All are fine with the trach open and in use, and all are a problem when the trach is capped off. Sleeping is the biggest issue. She might be able to work through those first 3 with modification (like taking a rest when she gets too exerted or calming herself during crying).

Wednesday I tried letting her sleep with her cap on to see if the Botox had the desired result. Although it was somewhat better and she didn't wake like she normally would she was noisy and that's not a great sign. After an hour breathing like this she didn't wake up but I suspect she would have after another hour or two.

I took a little video so you (and the docs) can see.

Since she does have a 4.0 trach cannula down in her airway it might be worth downsizing her trach. I've e-mailed her doctors and am waiting to hear back about that. I might try again on a weekend (I have to stay awake) if we downsize.

For now we are just enjoying her. She is doing well and seems to be hitting lots of inchstones lately. In case you missed it, read this post to see what I'm talking about. She's going where she wants to go, doing what she wants, doing well at school, getting into mischief, eating food, and communicates well enough in her own special way to get what she wants (most of the time). So really she has a lot of reasons to be a happy girl. And she is. Trach or not. Truly I am at peace knowing that it could go either way for her.

Have a Happy Mother's Day, especially all my trach friend mommies. I was chatting with my mom and she said, I hope you enjoy Mother's Day and think having kids was "worth it". My response? "Of course it is!!!"  The mom job is not an easy one, especially with a medically intensive special needs kiddo, but I love it (even on the days I complain a bit) and my kids (all three) mean everything to me!


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  3. Botox is having some side effect also like sweating and broadly speaking, in two major areas of side effects paralysis of the wrong muscle group and allergic reaction. Bruising at the site of injection is a side effect not of the toxin.

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