One Month Post Double Aortic Arch Division
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.
Struggling to Breathe, Struggling to Eat
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. I was nearly in tears as I spoke to her. The nurse was concerned enough by my descriptions of his breathing 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. You can see him arching his neck in an effort to breathe and get t he food down his throat.
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.
Treating His Symptoms, But What’s the Problem?
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. They find a problem and “fix” it, but noone knows the cause of the problems. They are treating symptoms, not Apollo as a whole.
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? Sending us home with a toddler who struggles to breathe all night like, chokes every time he eats, has failure to thrive, sounds drastic to me. Finally trying to get to the bottom of his health issues sounds like the prudent course to this parent.