Tuesday, May 3, 2011

Sleep Study Night




we checked in at 6:45pm at Texas Childrens Hospital 21st floor..little did I know what we had in store! I knew these things were difficult, in fact the ENT told me, "most parents do it once and never again despite the recommendations for a study annually after age 1." I've had friends that had babies with apnea and they said it was miserable, even a fellow Warrior mom had one done last month on her son a few months younger than Parker...guess what they say is true "ignorance is bliss.."

At 7:10 we started the process of "hooking him up" with wires and sensors to the extent I have never seen before! 25 on his head alone!! To say this was a difficult task would be an understatement. He cried, angrily screamed, sobbed, to the point of exhaustion, catching breath, you name it for 1.5 hours. The tech kept telling me "not to let anything touch the wires" come on, the poor kid was desperate to be held close in a hug by his Mom. Or, better yet, get down and run around! She had to remark his head with greasy red wax crayon at least three times. She tried to find reinforcements, but that tech was "having trouble of her own," so we went at it one more time. I can promise you I was not leaving without a fight although the tech almost had me convinced it wasn't going to work. So, we "papoosed" him (nice way of saying tie up all arms and legs in a sheet) and we toughed it out. This was after she put shunts on both arms (like velcro casts with sticks) to keep him from pulling wires off. By God's grace we pulled it off and he was "wired." Don't let the pictures fool you, he may be smiling in them, but he was fit to be tied. He got about 10 minutes of play before we started while I brushed my teeth for the night.

Parker fell asleep quickly (not surprised) and he had 3 easy hours of sleep until midnight when he pulled the tubes in his nose out. So, we then spent the next hour getting those back in. He was trying to sleep through it all, but we had to wake him and crying commenced again. After three tries we finally prevailed and some "super sticky tape" was taped over what you see on pics. Asleep again...ahhh..then at 3, 4 and 5, the machine that read the nose wires (CO2) kept stopping so wires had to be replaced. Parker slept through this fortunately.

At 6am, we were told "test is complete!" "Gee, how rested I feel!" LOL, Then came the "cleanup" of stickie tape which I'm still working on this pm.

So, the tech asked me several questions (part of the study):
1) did he sleep here like at home? ME:Ah, NO, we never wake up at night nor have intentional torture before sleeping...
2) how long do you think it took him to fall asleep? ME:5 minutes SHE:Something like that she says, it was really fast..not surprised, he is easy to put done to bed, but after all that emotion it probably wouldn't have taken a minute!
3) how many hours do you think he slept? ME:6.5, SHE: no, more than that. ME: well, test was 8 hours, minus 1 hour in middle of night, and other "issues" maybe he did sleep more, but....

we will get results in 72 hours, but what she did say was his REM was impressive, I tried to get %, but she hadn't figured that out yet. She wanted to know what we were doing differently.

So, do I recommend the study? Well, I do, but be prepared. I will also wait to see what results say to make my final opinion. We don't suspect apnea and if test confirms that he does not have apnea, I might be inclined to "trust my gut" and pass on that annual study. Problem I see potentially with our study is Parker was so upset, his nose ended up getting stuffy, so is that a good time to take the test? How do they measure all that stress in the results?

And, to top all of this off, I learned they watch you all night! Creepy for me, big balls on ceiling with cameras. Needless to say if they had studied my sleep they would have known I wasn't sleeping a wink!

Gotta love this precious boy, smiles even in the midst of tortune..Papa Smurf look out!! "gee MOM, why can't I bend my arms, waving and playing is hard with these things on!"

3 comments:

  1. We just went through this, I feel your pain! I never want to do it again, hopefully we won't have too! Glad you got some good information and it's all over!

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  2. Can I ask about REM sleep what does that comment that it was impressive mean ? Is this a Gingko related outcome? I have read somewhere that there is a relationship between the two ..but I may have that completely messed up!

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  3. not sure what "impressive" means at this point until I get Dr report. My guess is the tech was surprised with how much REM he had. Typically w/out gingko REM would be typical of another child with DS NOT on ginkgo, we all know this can vary, but most kids with DS have poor REM sleep. Read Teresa's blog posts on this, the science is there, we are testing it out to see what happens. We've switched Parker to 3xs daily with gingko based on the research.

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