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.
It's been cute, since about September Ainsley has starting signing sleep when she's tired and wants to go to bed.
One day I was able to get her to sleep with the mask on (without the air flow on) for her entire nap.
I much prefer to see her look like this when she sleeps.
As always there is a ton going on. We are still waiting to hear word about insurance approval for her eyelid surgery. We're working toward getting Ainsley to use the walker without the sling seat. We are still working on finding the right wheelchair for her. And we're trying to get her a communication device. After weeks of discussions we just finished a 3 hour IEP meeting on Wednesday (that could be a whole post in itself). The school finally hired a teacher for her class so I'm feeling better about her schooling. Other non-Ainsley stuff, we are busily getting ready for Halloween. Adrian is performing at the Seattle Center tomorrow for Dia De Los Muertos. We are looking at a rambler in Redmond and considering whether to try to get our house ready to sell. And Steve is super busy at work again. With the holidays just around the corner I'm concerned about how busy life is going to get but I'm trying to stay in the moment. Happy Halloween weekend!