Hannah: Sleep Apnea Status

We had Hannah’s endoscopy and MRI back on October 26th. There was nothing groundbreaking; her diagnosis is: 

1. An enlarged tongue (well duh, that’s most kids with Ds - or a smaller mouth)
2. A floppy epiglottis; the flap of cartilage at the root of the tongue, which is depressed during swallowing to cover the opening of the windpipe. This flops closed while she sleeps which causes her to stop breathing (low muscle tone strikes again). 

So the next steps are: 

1. A CPAP titration study (sleep study used to calibrate continuous positive airway pressure (CPAP) therapy.)

2. If Hannah cannot tolerate the CPAP, we will move to a supraglottoplasty; a surgical procedure to remove obstructive tissue from the airway. It sounds crazy, but lots of kids we know have had it and has helped them. 

Dr. Shott said this procedure is only 40-50% effective to get children completely off the CPAP. We asked for surgery first but were told no. 

Tangential, the bad habits feel like they’ve grown. We’ve gotten out of laying down in her bed, moved to the chair, and are now sitting by the door - the “camping out” method. We have yet to make the jump to leaving her room while she’s sleepy. She stands at the door and screams and sometimes falls asleep AT the doorway. Ergh. 

So all this work feels pointless because a CPAP is headed our way and we’ll have to lay in bed with her so she can (maybe) get comfortable with this hose hooked up to her face. 

And those of you who know Hannah can certainly paint a picture of how she’ll tolerate this thing on her face - are you kidding me?! Maybe she’ll surprise us. She handles sleep studies fairly well. 

Anyway, I’m headed to Children’s tomorrow night for our titration study. Zzzzz.