Apollo has been up in the night coughing to the point of choking again. We haven’t seen this in a long time. On top of that his eating is as bad as it’s ever been. He coughs and sputters less frequently, but it is still a struggle. He is up every 1-2 hours at night…and the other night the was making the strangest squeaking sound as he slept. At the suggestion of you blog readers, I recorded it so I could let the doctors hear it…I tried and tried to embed the video here (so you wouldn’t have to click to a separate page to listen) but couldn’t. The sound is a sound that is nearly impossible to describe, but if I had to, I’d say it sounds like when you pull a balloon tight to slowly let air out. If you want to listen, it’s over on my Facebook page.
Anyway, I talked to a nurse from pulmonology again on Thursday, and she was concerned enough to give him an appointment for 9:30 Friday morning. Inspired by your suggestions, I also took video of him eating and loaded them onto my iPad.
These two clips are of a totally uneventful, “good” meal for Apollo. He didn’t choke, he only coughed once. Look at his ribs and back and notice how much he retracts when eating…and how noisy his breathing gets.
Armed with all this, I headed down to Seattle. Our pulmonologist was out of town, so we saw a new doctor. Both the resident and pulmonologist watched the videos and understood my concern. Dr. S thinks it is possible that the anti-anxiety medicine we are giving Apollo is making it much harder for him to breathe while he sleeps- hence the funky sounds. We are cutting his dose down (he can’t stop cold turkey) to see if that helps. He’s not sleeping for more than an hour or two straight anyway. Her other suggestion was to try steroids in case there was any inflammation…She thinks it is possible that the sound is laryngomalacia. I think she might have left it at that…but I wasn’t about to leave with a few “suggestions” and “wait two weeks”. Especially when it doesn’t describe the coughing and choking at night or his difficulty eating.
I told her that the doctors keep finding problems with Apollo and fixing them…but not fixing Apollo. Nobody has looked him over head to toe to find out exactly why he was having so much trouble eating/breathing/sleeping.
She paused and said, “Well, the other thing we could do is just admit him. That way all the doctors can look him over, do their test and discuss them…”
“Let’s do it” I said, without hesitation.
So we are. At 10 am Monday morning he will be admitted to Seattle Children’s hospital. The plan is to have everyone (ENT, pulmonologist, GI’s, etc) look him over. He will likely have another bronchoscopy, have the GI doctors look at his entire digestive tract and have a swallow study. He may have a sleep study and who knows what else done. All procedures that require anesthesia will be scheduled one after the other, so he only has to go under once.
Before we left the doctor said (in reference to admitting him), “I was thinking of going that way, but it seems like suggest a drastic, scary thing to say to a parent”.
Are you serious? After what Apollo has been through for the past year? Admitting him for a few days for tests hardly seems drastic to me.