Earlier in the month Ainsley had an appointment with her Otolaryngologist (or ENT for short) to discuss a procedure we had planned for the spring. Usually when we see him he performs a nasendoscopy where he inserts a small camera (think like a strand of spaghetti) down her nose so that he can view her vocal cords while she is breathing. Usually that means while crying, and trying to breathe, because she doesn't like it and she struggles when she cries if she's capped. As she gets older she is able to be more compliant so we got a decent view this time. What we saw wasn't too much different from what we've seen in the past. Her glottic area that surrounds the vocal cords is quite swollen. If you watch the video you will see that.
The procedure is to inject Botox into the muscles that control the vocal cords. He would be attempting to keep one of the muscles that CLOSES the vocal cords from working as well so that one vocal cord doesn't close as easily. This would give her kind of a partially open airway at all times. The Botox lasts about 2 months. The goals are 1) To see if the small degree of opening it achieves will help with her OSA enough that she could sleep with a cap on. 2) To see if she aspirates if her airway is open. She's gotten better at swallowing (This is a big part of why I work so hard on oral feeding, to improve the swallow to protect her lungs.) 3) To see if she does aspirate if it causes any lung problems. Since the Botox wears off we can stop it if we don't like the results and it isn't permanent like surgery is.
If the Botox does good things for her we would likely keep doing it, but it does require a trip to the operating room every 2 months. If that were to happen she would likely get a smaller trach, and wear a cap 24/7. IF that went well she might be able to have the trach removed. The hope would be that eventually she would be big enough or strong enough that she would no longer need the Botox. All of this would be a long process.
Based on what the ENT saw during the nasendoscopy she has pretty decent movement of her vocal cords so he's feeling less optimistic that this is going to be "the fix" for Ainsley. He has another patient (with a different airway) that it has worked for. In our case it's hard to say what the chances are of it working but it's worth a try and I think it will give us some good information.
The procedure is scheduled for next Monday, the 29th. At the same time the ENT is going to do a sedated or sleep laryngoscopy where she is made to sleep but not as deep as normal sedation and he will evaluate her anatomy to see if he can determine the area of obstruction while she sleeps. (I suspect the vocal cords area.) Since it won't be natural sleep I have to wonder if it's really going to give us answers. She'll also get a normal laryngoscopy.
I always like it when we have something like this going on because it feels more like progress that "wait-and-seeing". Ainsley has been doing really well since she recovered from being sick in March. I think the Tobi-Nebs really helped her kick the Pseudomonas that trach kids are frequently colonized with. She's been able to wear her cap during the days for the most part and has needed minimal suctioning so I kind of hate to mess with a good thing. If things go badly she could get really wet, need a lot of suctioning or even get sick with pneumonia. If we don't try we'll never know. It could be just what she needs. Please think good thoughts for us that it turns out to be a good thing.