Botox October 2013

On October 14th Ainsley had her second round of Botox injections to the muscles that close the vocal cords. We are trying the injections to see if it would open up her airway some (or keep it from shutting too much). Initially our hope was that it would stop her from obstructing while she slept IF she was to get her trach removed, since that is Ainsley's biggest obstacle to decannulation.

The first round of injections were done on April 30th. It didn't have miraculous results (and we weren't surprised), but we did notice that she was a bit less likely to remove her trach cap throughout the day. And she ate better. That is why we decided to do another round of injections after the last ones wore off. (It took awhile to get approval and onto the OR schedule.)

This time the surgeon asked for a follow-up appointment, which happened on November 12th, during which he scoped her airway while she had the cap on. Ainsley did cry, but she held still and I think we got the best look we've had yet. The doctor had scoped her prior to the procedure on 4/30 and brought that video up to compare. It looks a bit less crowded. The doctor asked if I think there is any chance it's growth. I said absolutely not, but we will see.

We formulated a plan, when the Botox wears off we will bring her in for another look. I wish he'd scoped her like I asked the last time, it would have saved a lot of time but at least we have a good plan going forward. Then we will repeat the sleep study, without me in her bed. We'll just have to take our chances about her pulling the cap off. But this way we will be sure that there is no interference from my disturbed sleep.

Honestly, I would prefer just to try a hospital decannulation without the sleep study. I think the real test will be how well she does on CPAP without a trach and I don't think we'll really know until we try it. But we have a compromise and I will do the sleep study since they want it. We know she has OSA and will need CPAP support. My feeling is that we can always re-trach.

I have come so far in this journey. For so long I looked forward to every ENT visit hoping they would scope Ainsley and she'd have "outgrown" whatever her airway problem is. I was devastated every time that we were told to come back in 6 months. Didn't they know how hard this trach life is and how long 6 months feels? Now I feel barely a twinge of disappointment because I know what to expect. Not much.

In addition on November 7th we saw Pulmonary and I told him of my ideal plan and he seemed on board to at least consider it. He wrote orders for the sleep study which I will schedule this week. We are advancing Ainsley's oral eating. She's now eating about half her food. It's hard work, but I'm committed because my eye on the prize....eliminating tube feedings. I am so proud of how far Ainsley's come with eating! The doctors are amazed because they expected her to aspirate and for it to affect her lungs. We keep a close eye on that, and she's had no change in secretions.

In addition I do think she vocalizes a bit more on the Botox. She's had a few words for a long time, but her "all done" is sometimes perfectly clear now. I can't help but believe that if she were trach free her eating and vocalizing would be better and life would be a bit easier. Not easy. Just easier.  At the same time we've now been living this life for 7 years and I know we can do it if it's what we need to do to keep Ainsley safe and breathing comfortably.

Here is a little video from the appointment for those who would like to see it.