We've been talking to Ainsley's otolaryngologist (ENT) on the phone every few months. Mostly because he's impossible to get an appointment with so if I have a question I call. Plus when we last saw him in March he told us to come back when she was ready to cap during sleep which she really hasn't been. Toward the end of summer, during one of these phone conversations, we talked about doing a trial decannulation but he wanted us to see her Pulmonologist first. He put the kabbash on that and steered us in the direction of CPAP. That was okay, because through my own testing and trials I'm sure she has obstructive sleep apnea and was pretty sure she would fail decannulation at night because she wouldn't be able to sleep unless she could use CPAP. The pulmonologist surprised me by setting us up with a CPAP machine for home use to get her used to it before we attempt to decannulate, maybe this spring. That seems like a good plan. She's more likely to be able to tolerate CPAP if we do it gradually than if we'd simply pulled the trach and required her to sleep with the CPAP on. So that's the CPAP history.
The respiratory therapist who gave us the CPAP machine made a comment a couple times, saying that maybe she just isn't ready to decannulate. I shouldn't have listened because she hardly knows my daughter but it started the nagging what if questions in my head. This comment had me worrying that she's not really ready to go without the trach while awake and all this work getting her to tolerate CPAP would be for nothing. In a stroke of serendipity I called the ENT out of the blue last week because I remembered in Aug/Sept. he said he would help us figure out if her pulling of the cap was behavioral or not. He agreed to see us and squeezed us in on his surgery day, and I was so appreciative! Today was the day. After talking and doing a naso-endoscopy Dr. I thinks it's probably mostly behavioral. She makes a little sound while she breathes when she's capped but he says it's okay, mostly likely it's coming from the narrowness at the vocal cords. Some kids are noisy breathers and they are fine without a trach. Her airway is still somewhat swollen at the glottis. (I'll insert photo from DVD later.) So we will try 2 months of Prevaid and do another endoscopy to see if it helps or not. He is not optimistic but since it's the least invasive "fix" it's worth a shot. We'll take another look at the airway in 2 months.
Another good thing. The subglottic stenosis that was noted in an operative report was really glottic stenosis or in other words the swelling/narrowness at the vocal cords. So we lost a diagnosis. It's always better to have less airway problems. And he felt that her lower jaw is not the problem. There is a lot of space for her tongue.
He is thinking that she is obstructing in the soft palate during sleep . It is possible that Ainsley could require surgery to her mid-face or upper jaw. Cranio-facial will not decide about a mid-face advancement until she's 8 or so. If she stays about the same it's likely they'd suggest orthodontics instead. We may be consulting with an oral surgeon here soon. They may do x-rays to determine if the sleep issues are in the nasal/palate area. Dr. I will talk to cranio-facial and put in a request to get the x-rays and a consultation. If it's not the palate then it may be that the glottic area needs to be worked on. Either with a Cricoid Split where they remove her rib cartilage and use it to widen the voice box and spread the vocal cords a bit apart in the back. This would help because her arytenoids are a bit stiff from scarring due to previous intubations and swelling. Or she may need a partial cordectomy, where they remove a little of her vocal cords. Since the issue is sleeping, we need to know which area is the problem. It may be both.
If it were not for the sleep issue Dr. I would try decannulating her right now without surgery. Her airway isn't perfect but she could probably get by. This is exactly what I'd finally come to believe from listening to all the other trach moms on the Trach Forum. But alas she needs to be able to sleep so that brings me to CPAP.
I've worked out a pretty good system and Ainsley adapts well to routines. So she now knows what to expect and therefore does better because of that. She still HATES the CPAP. We discovered that it is FAR more uncomfortable when she breathes through her mouth. So I fought for a full face mask and am waiting to receive it from the DME, we should get it next week. For now I ask her to close her mouth (she's a mouth breather) and hold it shut. We put the nasal mask on and count to 15. Then I remove the mask and read her a book. We do it a second time. That's about as much as she can take. And it's not fun. We are busy, so I don't get to it every day but we're trying.