The risk from this procedure, is aspiration and the potential to develop pneuomonia from it, or worse, lung disease. Last time we didn't see a huge improvement in her airway (like enough to not need her trach anymore) but did see a little. We felt that she ate better, removed her cap less often, had less difficulty breathing during exertion and crying, and could vocalize more easily. Thankfully there were no signs of aspiration, like a change in her trach secretions or the amount of suctioning. It wore off at the end of July. After seeing a perceived decline I contacted her doctors about repeating...it just takes awhile to get the appointments all lined up and then get on the OR schedule.
At the same time she did much better on her last swallow study in June and we've been working hard to transition her slowly to oral eating. My thinking is that if she can eat orally and maintain lung health that we may consider surgery: a partial vocal cordectomy, or vocal cord lateralization in the future. After 5 years of wearing a cap off and on throughout the days with mixed results I believe she will need surgery to get rid of the trach, especially for sleep (unless she uses CPAP). Even then, without surgery, I think she would struggle to get by during difficult periods during the day, especially if she got sick with a cold or flu.
....Or we may just keep doing the Botox injections every few months (they wear off) and hope that eventually she grows so much that the obstructions she has don't impact her as much.
....It's also possible that the trach is really the safest and therefore best treatment for her.
So anything is possible right now. We must try to have patience. Here are the images from today's laryngoscopy.
- Upper left...I was struck by how "swollen" it still appears. It's looked like this for years. It's amazing that she wears the cap most of the day. Dr. I thought that it isn't actually too badly swollen, but that her tongue pushes the epiglottis back and causes "scrunching" while she is under anesthesia. I noted the lingual tonsillar tissue. It would be nice if it weren't there. But the surgeon is afraid removing it might causing scarring.
- Things look pretty open in the next image, not sure if that is clamped open, it looks like the vocal cords are nice and open.
- The 3rd, lower left image shows a small degree of stenosis and a bit of collapse where the tracheostomy tube goes into her trachea. But there is a pretty good amount of space around, so you can see how compared to the glottic area (VC), it's likely not a problem, since the "bottleneck" is above this area.
- The last image is the bronchi, which looks great.
Tomorrow she goes back to school. The Botox will be in full effect 1-2 weeks from now. So we will watch her carefully. We have a visit with the doc on Nov. 12th. I'm hoping he will do a nasendoscopy and we will be able to see whether or not the Botox really opened things up much. This is likely to be a long process. As I said....patience.
While we were there today I ran into a friend. Her son attended the "birth to three" program at the same time as Ainsley. His condition was comparatively mild, no major medical stuff, just a bit delayed. When I ran into her in the years following he was doing quite well. I was shocked to see her at the OR (operating room). She called out to me and the second I saw her face I knew everything was not "okay". She said her son has a rare, terminal brain tumor. It breaks my heart! She said she is looking for prayers so I don't think she'd mind that I share her son Victor's Facebook page: Victor's Victory. I'm not sure if I believe prayer can heal but I know for sure it can't hurt. The last thing she said to me is "Things really can get worse." and "Hug your babies tonight." It is so true. Sometimes it feels a bit "Pollyanna" to say "Thing could always be worse.", but it is true. Whatever your circumstances, it is wise to be grateful for the good, for each of our lives hold good and bad. Don't wait until things get worse to appreciate the good things in your life!