Apr 29, 2013

Today's Botox Procedure

We had a 10:00am check in time today. When you don't get the 6am slot then things tend to run late. Which they did today, it was after noon when I finally rolled Ainsley back to the operating room dressed in my "marshmallow suit"(such a glamorous look). It helps keep her calm if I'm there with her and we don't need her aggravating her airway by crying right before a laryngoscopy.

Luckily we had her NovaChat 7 communication device with us to pass the hours (we paid to unlock it for her birthday so it is now a fully functioning Samsung Galaxy Pad).

Check this out. We used the WiFi to connect to Netflix and after her episode of My Big Big Friend (I really wish she'd never discovered that show) was over she was able to navigate by herself to find a Curious George episode. Considering the lame TV shows the hospital offers it was a lifesaver!

They even let her take it back to the OR. Don't you wish you could wear one of these? I actually had a pretty stylish outfit on under that suit.

They gave her only a little sedation for the sleep endoscopy portion. Just enough to simulate sleep (as best you can when it's induced like that). The surgeon then used the endoscope to look at her anatomy to see if he could determine the area where the obstruction occurs when she sleeps. Since she sleeps beautifully with the trach they had to CAP her during the procedure to simulate non-trach sleep(as best you can since a portion of the airway is taken up with the cannula i.e. trach tube). He noticed that there was a fair amount of collapse in the soft palate area (roof of the mouth by the uvula). There was lingual (base of tongue) tonsil tissue (remember he opted not to remove it during her T&A last year) but he felt it was probably not obstructing. The vocal cords were barely moving. That last area of obstruction was exactly what I expected and is the most problematic. Though the soft palate may be significant during sleep as well.

Based on what he saw he thinks it will be a miracle if the Botox works. It will be at least 5 days before it takes effect. So we will wait and see.  Honestly we weren't too surprised to hear this and went into this with low expectations, hoping for the best, but expecting little.

During the sleep endoscopy CPAP did help her so that is still an option for sleep which is her biggest obstacle to decannulation(removal of the trach) . But there are other problems like when she coughs, cries, gets exerted and probably when she is sick. Remember we are talking about with the CAP ON, in other words breathing through her nose and mouth like you and I. When she breathes through the trach she is FINE, 24/7.  To decannulate we would want to know that she had a safe airway all the time. We have no interest in taking the trach out just to have her struggle for a few months and have to put it back in. Right now her airway isn't good enough to decannulate.

The doctor again today said something that I think is really important for trach patients (or their parents) to understand regarding airway anatomy. This one little bit of information really helps it all "click into place". And that is that the muscles that open the vocal cords are not the same and are weaker than the muscles that close the vocal cords. You can compare them to the jaw. The jaw is much stronger when you bite down than it is if you are trying with all your mite to open the jaw.  In Ainsley's case the airway seems to shut closed easily under stress (coughing and crying). And since she doesn't have strong opening muscles she would have trouble if she got exerted, really sick or when she sleeps because she is so relaxed.

IF (note BIG IF) the Botox worked it would create a small opening through the vocal cord area that might be just enough to allow her to sleep without the trach and manage better during the other stressors. Right now she is breathing through a trach tube that is about the size of a small drinking straw. So really we don't need a huge change.

Even though the surgeon isn't optimistic I hope we will at least see enough of a change to give us some indication if she can protect her lungs with an "open airway". If the Botox opens the airway and she doesn't get sick from aspiration then perhaps we may consider the following surgeries: a vocal cord lateralization or partial vocal cordectomy. As I said in my last post, this is one of the reasons I work so hard on feeding. Improving her swallow protects her lung health.

So for now we wait and see. I will keep you all posted with any changes.  Although in the grand scheme of things this was a small procedure it's still traumatic to the child. 
As you can see here she was very upset after coming out of anesthesia. She doesn't really understand if something terrible is coming next. And she hates the tapes, wires, blood pressure cuff and especially the IV.

She is so much happier once all that is off. But she still needs a little TLC before she is fully back to her happy self.  Hopefully by tomorrow because she is back to school and also has hippotherapy.
Thanks for checking in on us. I'll be sure to post if I see any changes from the Botox.


  1. Very interesting, Susan. It's amazing how complicated this all is. Something most people do without a thought. Crazy. I'm getting caught up. We need a phone chat soon. Next week?

    Please know that even though you don't hear from me for small stretches of time - I am always thinking of you and Ainsley.

    Much love,
    Christy xo

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