Sleep Study- Take Two!

As you may recall, Etta had a sleep study (almost exactly) a year ago. We didn't actually meet with the ENT/get the report until October. Well, turns out she doesn't breathe well when she sleeps and the doctor recommended at that time that she have her tonsils and adenoids removed. This surgery is so common in the Ds community that it's simply referred to as the "T&A" (get your mind out of the gutter!). I'm not REALLY sure why, but I asked if we could wait until she was three. I think it was because I wanted to know the status of her neck stability before they gave her general anesthesia. Which makes a little sense because there are intubation issues in children with the AAI neck instability and they (our kids with Ds) aren't tested for this until they are three. On the other hand, many many many children with Down syndrome have surgery before they are three...

Anyway, he agreed that we could wait until this summer. BUT, since it has now been a year since her last sleep study they wanted a follow-up study done. Not too sure why since we'll be having her t&a in July, but I guess to get a more recent baseline (they usually make you go in about 6 months after the surgery for another sleep study to make sure the surgery helped).

So, Wednesday night Etta and I drove up to Nashville. I didn't let her take a nap that day and she was half asleep by the time we arrived, but she managed to perk up once we got checked in and she could run around the hotel room (which, by the way, was the EXACT same room they put us in last year). Our technician was really nice and he had her hooked up by about 8:45 and E was asleep by about 9:10... snoring away. (I actually think her snoring/skipped breaths is worse, I guess we'll see.)

She actually slept through the night this time (last time she woke up anytime the technician would come in- which is often). This time they were even able to tape the nasal cannula to her face and she didn't wake up. The only time she woke up was when they had to come in so we could get the wires untangled. While she slept pretty well, I didn't get much sleep at all! She rolled around/moved around A LOT. I suddenly remembered why we stopped co-sleeping. I woke up to her feet in my face more than once. I woke up every time that technician came in the room (about 6 times). Also, this pregnant lady had to get up about three times to pee. THEN, he came in at 5am to unhook her.

YAWN!!

So, I gave E a bath to wash all the gel out of her hair and sticky stuff off of her face and then she wanted to eat goldfish crackers and watch cartoons while I got myself dressed.

We were home by about 7:30. Etta fell asleep about 15 minutes before we got home, but once we were here she seemed okay.

She seemed okay enough to take to school (it's only for three hours). Around 8:30 I loaded her and her backpack (with a packed lunch) into the car and she started crying. It was a sad, sleepy cry. :( So, I unbuckled her and carried her to her bed and she slept for three hours! She got up a little after noon and had lunch and we went to Publix (where I saved 44% with coupons! woot!).

Etta's Sleep Study

YAWN!

Etta had a sleep study last night in Nashville at the Vanderbilt Marriot.  Sleep apnea is a common problem in people with Down syndrome caused by obstruction of the upper airway by large adenoids and/or tonsils.  This occurs in approximately 45% of people with Ds.  So, it's basically routine to perform a sleep study at some point. Some of our concerns with Etta involve waking at night, moving a lot while sleeping at night, being a light sleeper (mostly at nap time) and some tiredness during the day.  Also, I have noticed some light snoring and possible periods of not breathing when I have slept with her (though it's been months since she's slept with me).   

So, we arrived at the sleep lab in the hotel a little before 7:00pm last night.  USUALLY Etta goes to bed around 7 (sometimes even 6:30).  We got checked in and Etta wasted NO time getting acquainted with her room!  She checked everything out! 

She loved when she figured out that she could safely get off the bed all by herself. 

After a bunch of excitement, we snuggled in her bed and started watching a movie on Disney channel.  Then, around 8:15 one of the technicians came in to talk about the night.  He suggested that we may want to let her fall asleep before getting her all hooked up.  Problem with that was that when he left Etta was WIRED (and not in the "hooked-up" way).  She wasn't snuggly anymore.  She was climbing off the bed and running around the room and opening and closing drawers/doors on the entertainment center and just basically running amuck!  LOL.  Well, it's funny now, but at the time, it was really stressing me out!  So, finally around 9:00 a different tech came in to try and hook her up while she was awake.  I think Etta wasn't too sure of this stranger attaching things to her and she quickly plopped herself into my lap.  The tech got everything attached except for the nasal cannula.  She said that is usually the one thing that kids have a hard time with so she said she'd be back in an hour to do that part.  Etta sat quietly while she was getting all of the wires attached and just that little bit of sitting calmed her enough that she realized how sleepy she was.  She fell asleep about 4 minutes after the tech left the room.  9:30! Two and a half hours after her usual bedtime! whew!  I didn't care at that point.  I was just SO happy that she went to sleep! 

I went and changed out of my jeans and washed my face and brushed my teeth and got back in bed with Etta.  They let me sleep with her because I was worried about her falling out of the bed.  They put bed rails on the sides of the bed, but at home in her crib, I regularly find Etta upside down in her bed and I was worried about her falling out of the bed.  So, they just told me to try not to touch her or snuggle her as it may interfere with the study (the heart monitor might pick up my heartbeat).  So, I slept all the way over on one side of the bed, trying to take up as little space as possible.  She still managed to snuggle up to me some...

Around 12:30, Marvin (one of our techs- the only one who told me his name) came in and made a couple of adjustments and placed the nasal cannula.  She woke up and it fell off before Marvin had even left the room.  I didn't worry about trying to reattach it since they acted like it wasn't a HUGE deal and I was more focused on getting her to go back to sleep.  She woke about three or four more times in the night, but was always quick to go back to sleep.  Then, around 6am, the lady tech from earlier came in to wake us up and unhook Etta.  I made sure to grab the camera before E was unhooked.

After all of the wires came off, Etta and I got in the bath together.  I was able to wash MOST of the sticky gel out of her hair, but her legs still have sticky residue on them and will probably take a few washes to get it all off.  Hmm.. are you allowed to use GooGone on skin? After our bath, Etta was getting into everything! 

So, she watched cartoons while I finished getting ready. 

I went into the bathroom to get something and when I came back out, she had snuggled back in the bed under the covers.  She looked pretty sleepy still.

We left the clinic/hotel around 7:30.  On our way home, we stopped at the Wal-Mart in Cool Springs to grab a few things.  By the time we got home (around 10), Little E was PASSED OUT! 

I tried to transfer her to her crib, but she woke up.  So, we hung out a little and she had lunch and then I put her down around 11:45.  She's still asleep now at 1:47.  She usually naps for about two hours... We'll see if she takes a longer nap then usual...