One very valuable thing I’ve learned through having a child who has to see a lot of medical specialists with long wait times for appointments? Ask to be called if anyone cancels. Because they do, and it means an appointment set for a month away can suddenly be an appointment the next day. Which is what happened to us today.
I had set an appointment for a new ENT to check on Stellan’s scary breathing for August 18th, his first availability for a new patient. But while making the appointment, I asked to be notified of any cancellations and I was put on a waitlist. Low and behold, Friday evening at 5pm I got a call saying I could come in first thing Monday morning. So there we were at NYU at 8am today. (The logistics of which would require another post altogether, which I’m not sure I’ll ever write…)
The new doctor was really helpful and kind and not at all condescending as I explained my concerns and my theories about why Stellan’s breathing had suddenly taken a turn for the worst. He agreed that Botox injections in his trapezius (shoulder) muscles could definitely have had an adverse effect, and said that another laryngoscopy might be in order, but was able to to an in-office check first.
This, of course, required placing a thin tube with a tiny camera on the end into Stellan’s nose and down his throat. I’ve never had this done to me personally, but I can only imagine how awful it must be (and also reminded me I’m glad we skipped the N-G feeding tube option), and Stellan definitely hated it. The good thing was that it was over quite fast – within 60 seconds – and would’ve been even faster, but Stellan has a tendency to hold his breath when he cries, so it took extra time for his airway to open up for a good picture. The other good thing is that the doctor recorded everything so we can compare with another video we’ll take in a few weeks time when we go in for a follow up.
Because it turns out that Stellan’s tonsils and adenoids are both quite inflamed, particularly the tonsils. And that is definitely constricting his airway. Why does this make me happy? Because this is a “normal kid thing” and normal kid things are often things I forget about since we unfortunately have to deal with so many non-normal kid things with Stellan. We often assume the worst, when there could be a simple explanation like teething or tonsils.
So we have been armed with medication to try to shrink both the tonsils and adenoids (a little spray into the nose on a nightly basis) and we’ll see the doctor again when we had our original visit scheduled in mid-August and hopefully see some progress. If not, it may be time for the little man to have his tonsils out. And in the meantime we also have some ways to help improve his breathing through better body positioning and simply reminding him to take deep breaths – something he kind of forgets to do when he’s concentrating hard on doing something else like using his hands.
All in all, I’m tremendously relieved. At least for now!