Sleep Study Nightmares

In the mood for some good old fashioned misery?  Then a Sleep Study is just the ticket!   Packed with frustration, pleadings, and prayers that all the funky stuff you’ve witnessed while your kid sleeps shows up during the night someone is actually there to RECORD it.

 

sleeping duriing a sleep study

It begins with having to lug up every piece of durable medical equipment a Brave Hero owns up to the hospital a hour away at a time you, yourself, would rather be in bed.

The first thing you’re told when you walk in the door is that “You just missed JUSTIN BIEBER!”     What?   Who?

heh.

weird positions to fall asleep in

If your kid falls asleep in weird positions, his name might be Parker.

As your husband hooks your kid up, and the nurse sticks the monitors on, you are handed (and I kid you not here) a THIRTEEN page fill in the blank test of every weird sleep issue there is.  Does your kid kick his feet during his sleep.  Um.  Maybe?  Define kick his feet.  Is this a trick question?  While sitting up all night last night watching, we did indeed discover that we need to add kicking one leg during sleep to his list of weird.

 

all hooked up for a sleep study

A giant poop explosion later, Parker finally falls asleep.  There’s no doubt in my mind that was revenge for him being hooked up to a zillion probes glued to his head.   Reed shakes his head and refers to my seemingly bizarre bathroom humor, which is kind of like gallows humor.  But with poop.

When asked what time Parker usually wakes up, I replied somewhere around 4:30 a.m. .  I was off about 30 minutes.  He actually woke up at 3:30 a.m.

Much to Reed’s credit, he was totally okay and actually upbeat when I called him at 4:30 a.m with the request to come and pick us up.  This made losing the who’s going to call your husband at the crack of dawn  coin toss  to the nurse sting a little less at least.

a little boy with down syndrome sleeping during a sleep study at Primary Children's hospital

We’ve got about 5 hours of sleep recorded.  Several apnea episodes.  And it is really nice for someone else to be able to hear the air leak around Parker’s trach that I am pretty sure is big enough to drive a freight train through.

We loaded everything and everyone back up and headed home.

10 minutes into the drive Parker was sound asleep in his car seat.

sigh.

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Suzanne says:

    If you don’t mind me asking… What type of trach does Parker use? We had an issue with my daughters trach and have finally found something that works for her while on the vent. The cuffed Bivona’s are larger around than the cuffed Shileys. Anyways – each of these kiddo’s is so unique and there is ALWAYS going to be something. This is the thing that worked for us. Glad you got one more thing checked off the list so you can add another 3 :) .

  2. suzanne says:

    It may be something to ask about. We have had a cuffed bivona for several years (before Shiley even made cuffed trachs). This was after trying 4-5 different types of trachs (we even tried out a monster foam cuffed trach – awful!!!). Then when in patient my daughters trach became damaged and they pulled out a shiley to replace it, didn’t work. We compared them side by side and the balloon on the shiley is like a long balloon and the one on the Bivona is like a perfectly round balloon and expands out a bit larger. I do know that Bivona’s cost maybe 2-3 times what the shiley’s do :( . But heck whats another insurance fight ;) . Good luck!

  3. Wow! What a hero! I’m interested to know more about what else they find out by his sleep behaviors. And I’m hoping you were able to get a nap.

  4. I’ve been through two sleep studies myself, not the most comfy of tests that’s for sure.
    This may be silly but this got me to wondering how much apnea treatment differs for those with a trach and those without.

  5. Sounds about right, falling asleep in the car right after the sleep study.

    I hope the results bring some insight and solutions for you and Parker.

  6. PVT earl (raptor) says:

    Tammy, If I didn’t know better I would say that is Joey in that second picture. He wore a gray shirt and black pants today and he sleeps EXACTLY like that most of the night. We need to get these 2 boys together sometime. They have so much in common.

    • Steph says:

      Oh goodness…I have no idea who “PVT earl (raptor)” is or how it attached to my message.