Saturday, January 20, 2018

Another Sleep Study (for Someone Other Than Tessie)

Yesterday I loaded a reluctant James into Paul's car and we headed north.

Within moments he was soundly asleep.  

He was going to see the pulmonologist at the office that Tessie goes to at the clinic at the Children's hospital a little over an hour north.  

I sighed as I thought about the process of getting Tessie an appointment there.  It had taken me months to be believed and get that first sleep study and then over a month to get the referral there, for a second opinion.

With James (I'm certain because of Tessie) things went quite differently.  It only took two conversations.

First I had told his neurologist what I was seeing (because I was fairly certain it was a "brain thing" because of Tess) and he told me to tell his primary doctor.  

So, reluctantly, I brought it up under "concerns" at his well child visit:

"I really don't want to tell you this," I began, "because I can't imagine him tolerating a sleep study."  

He had barely tolerated being weighed and measured. "But he gets up in the early morning and sneaks out of his bed and climbs up into our bed.  It's a king sized bed and a lot of the time I won't even notice that he's there."  

"And about four times now I've woken up and found him asleep, with nothing touching him, nothing over his face, on his back, not breathing.  And because of Tessie I knew to put my hand on his chest and I counted and I waited. I have seen him not breath for over twenty second before I shook him and he gasped.  So I know that he has at least four apneas that I had witnessed in which he was totally silent making no effort to breath.  And if I have seen it happen four times... well.... I don't want to think about how often it must be happening when I'm not watching."

Because, without the alarm I would have witnessed maybe four of Tessie's apneas over a year.  So four in a month... makes me uneasy.

His doctor felt strongly that he needed to be referred to the same doctor Tessie sees.  And this probably was another reinforcing piece in the puzzle of the likelihood of an underlying genetic cause... there are now a lot of questions about how Maggie slept as a baby (like a rock), and whether I suspected apnea with her (not at the time, but in hindsight... I believe it is incredibly likely... now I have no idea because when she goes to bed she tells me good night and says "Out please.  Door closed." if I linger.).  

If James does have central apnea, I guess we'll have to consider the possibility that he might not be the only kid that has it (I guess that would also offer fairly concrete proof of some sort of genetic abnormality that's causing the apneas, because central apnea without an apparent cause is incredibly rare, which is what her doctor seems increasingly to lean towards anyways) , but I'm going to try not to cross that bridge in my head before we get to it.  

James was so dramatic about the exam (being weighed, measured, having his eyes, nose, and throat checked, and breathing listened to, so nothing particularly extensive) that he managed to escape the office, clutching the a new toy motorcycle, car, and two stickers.  When we arrived home I think Patrick started to wish he'd gotten sent to the pulmonologist.

I will admit that I am planning this sleep study as a very special "Daddy-James" slumber party at the hospital.  Both because I hope that James will do better with his Dad there... and because after a half dozen sleep studies with Tess I'm a little burnt out.  


  1. Sleep studies are exhausting for the parent! I truly understand. My son (named James by the way :) ) went through a couple of them as a teen, and since he was a minor I had to stay but the foldout chair for the parent was not all that comfy. In our case he ended up with a diagnosis of narcolepsy, although I'm convinced it is a weird sleeping problem related to trauma from a concussion. I sure hope they find some answers for your James! It is so hard when there is something wrong but no one is sure what.. The docs disagree about my son's diagnosis...but in the end he is on an expensive medication that makes him sleep more normally so at least something is helping. Sleeping issues and autism - our families are not boring!

    1. Oh my goodness, it would be touch making it through the night in a fold out chair. And I'm glad they found something that works! I'm hoping Patch isn't going to be next. Because all those sleep questions they ask sound a lot like him (with his sleep walking and all). I really hope that doesn't point to anything weird!

  2. How is your health, Cammie? I have t seen an update on your suspected blood infection at the end of December. I’ve been praying for you. TB

    1. Thank you for the prayers. I've been nervous to write another post because I'm afraid that if I do it will get worse again and it seems like it's gradually getting better. My doctor thinks that there was something bacterial, but that the Z-pack was enough to kill it. But I still seem to have had a few more viruses since then (I think maybe I just got so run down by it that I'm catching everything). But I'm cautiously optimistic. I feel like the fatigue is getting to be less and less, slowly, and every time I'm getting sick now it really seems to be just cold viruses without fevers (and actually I beat this last virus without much trouble and am feeling pretty good today, so I'm really getting hopeful). So I'm hoping when this cold and flu season is actually over and the viruses are gone I'll be totally 100%. I think Paul's still pretty skeptical that it's really, really over. It's kind of a wait and though because infectious disease was booked out until June...

    2. And it's wonderful to hear from you! I hope all is well with you and your family! <3

  3. I hope you get everything figured out soon! It's so difficult facing health issues when you don't know what is causing them :(. Have you ever considered having miccroarrays done on you and/or the kids? My older daughter has an x chromosome duplication that was only found through that sort of testing. They think it's responsible (to some degree)for her apraxia of speech but no one can say for certain. You guys are in my prayers! :)


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