ENT news

So, we went to Harlie’s ENT appointment today. I went hoping to hear that Harlie could be upsized to a pediatric sized trach (she’s still in a neonatal size). The reason why I wanted that is because then you can start to try a Passy Muir Valve (PMV). It is a one-way valve that allows air in, but doesn’t allow air out. The trach tube is smaller than the trachea, so air should be able to go past the tube and past the vocal cords, thus making sound. But, unfortunately, we learned more bad news. She has tracheomalacia.

Tracheomalacia is a weakness and floppiness of the walls of the trachea. The walls basically collapse, which doesn’t allow air to pass through. Typically, they outgrow this condition between 18-24 months of age. So, until she outgrows this, a passy muir valve is not an option. This appointment was not fun. At one point I had to turn away – I just couldn’t watch Harlie struggle to breathe while the doctor did her stuff. I guess this makes her jaw reconstruction less of a priority. This whole time we were thinking that if her jaw was fixed, we could take the trach out. Now that that’s not the case, I guess we can relax on that.

I have to say I was bummed to find out that she has TWO reasons that are RARE to need a trach. Anyway, tomorrow we have an orthopedics appointment (for her spine issues). Hopefully, it will go okay.

Take care,
Christy