Showering using only hotel conditioner, because that is what you have, in a 2 x 2 shower stall that is shared by 40 other parents who have also been sleeping on floors and pull out chairs and are also without soap sort of sums up the feeling of this place: prickly, uncomfortable, urgent and somewhere you really don't want to stay for very long.
Mya has severe obstructive sleep apnea, the worst they have seen in a long time. She was going up to 2+ minutes without a breath and over 40 seconds on multiple occasions throughout the night. I guess the threshold is 20 seconds to be apnea, so we pretty much blew that away. ENT finished their exams yesterday and ruled out tonsils and adenoids as the major factor. Her low tone in her trunk is contributing to what they call a floppy airway when she is sleeping, which in her case is mostly the tongue falling back to the back of the throat and cutting off her oxygen, when it should be moving forward with each breath. They were surprised how well she responded to bipap and room air only, so we should be receiving an at home bipap machine today for her to use at night and then with any luck we will be showering in much nicer accommodations by the morning.
With a child with Mya's level of neurological impairment the onset of these breathing issues is not altogether uncommon but also tends to be progressive, so we have had some additional conversations about what all of this means in terms of her future and about what decisions we could likely be facing as she grows. At some point we may have to make a stand on how much we are willing to intervene. Obstructive sleep apnea sounds so manageable but it seems that this may only be the beginning. But for now, she is breathing wonderfully without support while she is awake, and the treatment for sleep seems to be working, if a little inconvenient and uncomfortable for the parties involved.
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