Simon Sleep Study, Take II

Last night, Simon did his second sleep study. The first one (two and a half months ago) was inconclusive, which is to say that the data were really dismal (showing “moderate to severe obstructive sleep apnea”), but he’d had a terrible and atypical night, so no one knew whether he always had bad nights or if it was just that one time. So his doctors wanted to try again, which caused me no small amount of apprehension.  As Todd pointed out at some point, “If Dr. Sleep wants Simon to have another sleep study so badly, maybe he wants to take care of Simon that night!”

I should mention that the whole point of these sleep studies is to see if Simon is getting enough oxygen while he sleeps. Since he was born with such a small jaw (due to what is known as the Pierre Robin Sequence), his tongue lies farther back in his mouth and can (does?) obstruct his airway when he sleeps. As a result, he has gotten special dispensation from his doctors to sleep on his tummy, which may be one reason we usually get eleven uninterrupted hours from him at night. But are they eleven oxygenated hours?

Last night’s study (which we’ll call Number 2) was much, much better than the first one (Number 1). Let me compare:

No 1: Checked in at 8pm, and wire hook-up completed around 9:30 or 10pm — many, many hours past his bedtime, and frankly, kind of close to my own bedtime. Did not set the stage for “typical night.”
No 2: I had the foresight to ask for early check-in, which the hospital kindly accommodated. We arrived at 6:30, I fed and changed Simon, and he was hooked up by 8:00. He actually fell asleep mid-hook-up, only an hour or so after his normal bedtime.

No 1: Technician hooked up wires Very Slowly. This was likely because I asked a million questions about what everything was for and he politely answered, but this slowed him down.
No 2: Technician (different guy) paid attention when I mentioned Simon’s 6:30 bedtime, and did the speediest hook-up I could have asked for. When he had to leave the room to check the control booth, he ran — literally. He also kept apologizing to Simon for taking so long. I kept my mouth shut, although I did have questions I wanted to ask. Nothing affecting Simon, just general science-teacher curiosity that really didn’t need to be entertained.

No 1: Simon kept having problems with the toe oximeter (which measures oxygen levels by shining a bright red light on the big toe), which the technician had to keep coming in to fix.
No 2: Still had oximeter issues due to Simon’s sweaty feet, but the technician, a father of five, was an expert at baby-sock-removal and -replacement. Rather than trying to stick the sock on the foot, you have to sort of invert the sock and make it swallow the foot, as it were.

No 1: Simon woke up every thirty minutes screaming and Mama got very little sleep.
No 2: Simon had two freak-outs. One at 9pm, before I went to sleep, and one at 12:45am, which was embarrassingly soon after I had turned out the light for the night. What can I say, I was just farting around on the hotel’s free WiFi and reading Little Women (which is extremely moralizing but someone was about to die but didn’t). It took twenty minutes to calm him down, but then he was out until 5:30am.

No 1: Lots and lots of hair goop. Exceedingly much hair goop. Disgusting amounts of hair goop piled in mounds on his scalp.
No 2: Hair goop used sparingly, with Simon’s goopy hair plastered over the electrical leads to cement everything together. Much easier to wash out, and touching Simon’s head was way less disgusting.

No 1: Wore short sleeves. Simon fed twice during the night. Got hair goop in my elbow-crotch twice. Did not come off easily.
No 2: Wore sweatshirt. Simon fed once. Hair goop went on sleeve. Sweatshirt went in wash. Did not touch skin.

No 1: Mouth-nose breathing sensor frustrated baby, who kept moving his lip around trying to get it off. Maybe this was why he woke up every thirty minutes? It reminded me of when you give peanut butter to dogs.
No 2: Different kind of sensor, caused less discomfort.

No 1: Simon peed through diaper, through diaper cover, through pajamas, through swaddling blanket. Was stinky antibiotic pee.
No 2: Simon peed through diaper, through diaper cover, through pajamas (no swaddling this time). Was still stinky, but not like antibiotics.

No 1: Simon woke up hungry, but we had to take off all the leads before I could feed him. This required a lot of screaming, just so Simon could be sure I knew he was still hungry and hadn’t changed his mind. He is a good communicator.
No 2: Simon woke up hungry, but I got to feed him before detachment. This placated him so much that even the sticky face-tape removal didn’t get much of a rise out of him.

No 1: Used warm washcloth to scrub out hair goo. Baby was too small to put in big bathtub confidently, and a little too floppy for head scrubbing to proceed without my being afraid of hurting him. Lots of screaming.
No 2: Full bath. Lots of smiles. Kicking and splashing. Used his own baby wash on his head. Plus, nice plush towel at the end (he seemed to really like the towel, and tried repeatedly to eat it … Poo, I just realized I left his nice unscented baby wash at hotel).

No 1: Simon looked like a cyborg.
No 2: Simon looked like a cyborg but I was expecting it.

So now we wait a few weeks for Dr. Sleep to evaluate the data and make a recommendation. If Simon is still desaturating a lot (i.e. not getting enough oxygen) during the night, it’s possible he will need a surgery (osteogenic mandibular distraction, for you experts out there) to extend his jaw and bring his tongue forward. If he did okay, then that’s less likely.

My biggest source of anxiety with this last sleep study was that the data they collected wouldn’t be representative of Simon’s normal sleep (either better than average, which might mean the doctors were missing low oxygen levels, or worse than average, which might mean they would recommend a surgery that wasn’t really necessary). Although I wouldn’t say that Simon had the most normal night of sleep ever, I feel like it was typical enough that whatever the data show is probably reliable. And that’s comforting. So now I just get to try not to be anxious for two weeks.