Sucky news. Must be our turn?!

Well things were obviously going just TOO well.

Last night we ran an at-home overnight oximetry test, after we requested to Starship that one be run this week before our next Respiratory appointment, which thankfully happens to be next week.

Nate has always had noisy breathing and snoring, and has subsequently been through a sleep study, where he was diagnosed with sleep apnea and periodic breathing. He then had a stint on cpap (until the doctors decided it was less obstructive apnea and more central apnea), and is now on caffeine therapy twice daily. His hypotonia is also thought to be a factor within his apnea, which is meant to improve as he grows.

However in the past week, Nate's breathing overnight has been more worrying than normal. So much so that Robin and I have both been up at night checking on him. At times his breathing has sounded very laboured, other times wheezy, often quite shallow, and at times very noisy. It often seems like he is struggling to get oxygen, and last night's test basically confirmed that. In fact he de-saturated so many times (oxygen levels in the blood drop), that the oximetry machine basically didn't stop beeping and flashing its red light most of the night. I turned it off at about 3.30am, as after lying there watching the numbers for a bit, I figured that the doctors would have more than enough data to know there was a problem.

Yes comforting stuff I can tell you. (Whoops the sarcasm is back).

Anyhow we are now back to Starship for another overnight sleep study early next week, followed up by possibly more nights, depending on what comes out of the study. Maybe Cpap again, or maybe it will be a move to oxygen overnight, or maybe it will now be a combo of both. Who knows. But unfortunately it's not likely to be as simple as caffeine. Bugger.

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