The Sleep Study.

Last week, Ellie had her overnight sleep study at the children's hospital.  We had this private room with a hospital bed, a rather uncomfortable love seat that can apparently turn into a bed, and a bathroom.  We also had all sort of monitors, wires, electrodes, nasal canula with a sensor on it, and  camera that records the ongoings in the room.  Good thing I didn't pick my nose while I was there for all to see on video!  Just kidding!  One has to have a bit of humor to survive these things.

A sleep study or polysomnography sounds pretty benign, right?  After all it isn't invasive.  There is no scalpel cutting into you. . . yet in order to record brain waves, measure the oxygen levels in the blood, monitor heart rate and breathing, as well as recording eye and leg movements during sleep, there are going to be an awful lot of wires, electrodes, and devices.  Which brings me to--how on earth does patient actually sleep during a sleep study?

Loaded with her iPad, blankie, a fresh pack of Princess flashcards, Eric Carlisle books, a wooden kitchen spoon (I have no explanation for that), and her little baby doll,  MacGyver Bear was ready for anything.

Even though your bambino is the one with all the fancy wires, don't expect to sleep either folks!  First off, the chances that your precious child will fall asleep are 50-50.  If she's awake, you're awake. Plus, by the time they get your child all wired up, it will practically be your bedtime.  If you opt to sleep on the fold out sofa, yeah good luck with that.  I slept with Ellie and it was like sleeping with a bed hogging ninja.  Seriously, Bear, you just had to sleep diagonal in the bed?  Say that you do actually get comfortable, prepare for the lab tech to interrupt the Sand Man every 30 minutes as she attaches more tubes and wire or readjusts ones that or there or my personal favorite, the respiratory therapist comes in to sneak a finger poke.  Right, because a child can sleep through someone pricking her heel with a  needle and then milking that foot like a cow to get enough blood for the blood gas they want to run.

Now that I got that out of the way, here is what actually happened with us.  On the day of the study, Ellie had school, OT, and ST.  That day she decided she wanted a nap.  I kid you not.  She said "mama" and signed "bed"!  After all of these months and girlfriend wants to take a nap on the one day we need her to sleep at night.  This mama bear did not allow it!

We arrived at the hospital at 7pm and she was so tried.  The sleep lab tech didn't get us from registration until 7:45pm.  Over the next hour, Ellie has electrodes placed on her legs and chest and had these belts strapped across her.  As you can imagine, Ellie was not a big fan of this.  She fought in the beginning, even with the iPad, but once I had Ellie imitating everything on her little baby, she tolerated just fine. . . until we got to her head.

There are 15 electrodes that go on the head.  First, you have to actually measure the head and then measure from various points once the first few electrodes are attached.  So essentially, the tech has measuring tape with a red wax pencil to mark the spot on Ellie's scalp.  Then, conducting gel is applied.  Then the electrode placed.  Finally, a piece of fancy tape with some fancy, stinky glue is place over the electrode.  Repeat 14 more times.  It didn't matter that I brought the iPad, little baby, the wooden spoon, blankie or even the brand new package of Color Wonder markers and the brand new package of flashcard, Bear became a rather distraught tornado of destruction.  The lab tech was very good and patient, but when Ellie doesn't want to do something, she has the strength of a gorilla.

When Bear had enough, at this point it was 9pm, we decided to let her fall asleep and then she would try to do the back of her head, facial electrodes, and the nasal canula.  I pretty much rolled my eyes at this.  I mean, come on!  Who could sleep through that?  I was wrong.  Apparently, my daughter can.  I guess that is was happens when you are that tired.

My biggest fear was that she wouldn't sleep and yet she did. . . for hours at a  time!

I learned a few things during this sleep study:

From 9pm-12:30am she did not move.  At all.  She stay in the exact same potion--on her back, hands under her bottom and her legs criss-crossed. Not comfortable looking at all.  How she managed to do that without getting a bed sore is beyond me.

Right at 12:31am, Ellie became extremely restless.  She was pulling up her legs and shaking her head side to side.  It was as though she couldn't get comfortable.  This went on for the rest of the night.  She never really settled back down, but she stayed asleep.  I do not find it coincidental that this started at 12:31am and Ellie's early wakings tend to start between 12:30am-3:00am.

My daughter doesn't love me.  Well maybe not, but she does talk in her sleep.  Periodically, throughout the night, Ellie would utter "dada da dada da".  "Dada".  I see how it is.  I am the mean mommy who holds her down and Andrew is the good parent.  Daddy's girl!

My daughter has manners.  She may not always follow directions and sit still, but she does know her please, sorry, and thank you.  Early in the morning, the male RT came in to poke her heel for a blood gas.  Ellie, still mostly asleep, sat up and said "dada. Thank you. Thank you.  Bye bye".

My husband is awesome.  Andrew managed to escape spending the night in the hospital, but he did chauffeur us back and forth because my back pain skyrocketed and I was too sleep deprived to drive safely.  He showed up at 6am (which is ridiculously early for him) bearing gifts of donuts and coffee!

She is actually quite happy in this picture.  Daddy and a donut with sprinkles.  What is not to like?

Not to worry! The Bear may have looked miserably tired, but about 2 hours later, girlfriend was ready to go in all of her Ellie Bear Fashion Glory.

Elephant sweatshirt with coordinating elephant pajama pants.  Layered with a Hello Kitty hoodie.
The look is completed by a knit pink headband with faux seed pearls and Batman Crocs.
Entourage: play blood pressure cup and tweezers, scrap Hello Kitty flannel fabric
Princess Tiana barbie doll, Andrew's socks, and 1 baby washcloth.

In case your child ever needs a sleep study, here is what I recommend bringing:

Kiddo:

• 2 piece pajamas (no footie or one-piece)
• socks
• diapers/wipes
• toiletries
• change of clothes for the next day (we actually didn't bother with this)
• items your child usually sleeps with-lovie, dream lite, comforter, pillow
• favorite bedtime book
• iPad or toys for distraction (I brought NEW flashcards and Color Wonder to up the excitement)

Parent:

• Xanax. . . again kidding!
• Pajamas/yoga pants.  A spare set of PJs or shirt.  I always get something nasty on them like blood or in this case snot and electrode glue
• Hoodie because it is cold
• Socks, preferably fuzzy
• Clothes or the next day
• Toiletries
• Book for myself--this was my "just in case Bear false asleep and I am not tired" item. 
• Snacks/water bottle

Tips to remove electrode glue and adhesive:

Ellie looked like Beetlejuice after her sleep study.  Her hair was tangled, matted and every which way with glue that actually resembled plastic being moulded to her scalp.  She had massive patches of adhesive on her legs, chest, and below her left ear.

The tech gave us some adhesive remover wipes which did nothing and then recommended nail polish remover for her hair--say what????  Obviously I took Bear's hair dilemma to Facebook.

Face and body: rubbing alcohol, coconut oil

Hair: coconut oil massaged into the scalp and washed out, spray sunscreen, Dawn dish soap as a shampoo, and peanut butter.

The rubbing alcohol removed most of the residue, but not all of it.  I used a wash clothes with baby shampoo to get the rest of it.  There is still some there, but I figure that will wear off eventually.

I brushed out Ellie's hair after a major washing only to realize so much gunk was still adhered to her head.  I worked in coconut oil as much as I could along with a leave in detangler.  After rinsing to the best of my ability (remember the Chunky Chicken hates having her head touched), I tried to work out the softened chunks of glue from her hair.  Some of it is still there and I am going to pretend that I really care.

So now. . . we wait for the results which takes about 2 weeks.


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Sleepless in Austin: The Sleep Clinic Appointment

This post was meant to be published at the end of last week, only it disappeared into the blogosphere so I am starting over from scratch.  Actually, it was a post about the DIY oak bench, but you all were really due for another sleep post.  

I have no idea where she comes up with these fashion ideas
As for the bright blue penguin, yeah, I have no explanation for that either. 

I really feel as though this has been going on since the beginning for time, but really just since this past August.  You know, only FIVE months!  So what do you do when you cannot catch enough shut-eye?  Post a ridiculous amount of coffee memes on Facebook in hopes that you will absorb copious amounts of caffeine by osmosis through the computer screen.  Obviously.

You know that feeling you get when you feel like your head is full of sticky marshmallowy fluff and every bone in your body feels like lead?  That feeling of if you even try to function you will fall flat on your face and cry out “I cannot go on like this!” from that deep pit of despair?  Yes?  Yes?!  

Thursday was my pit of despair.  Who am I kidding? So was Friday.  Ellie’s early wakings finally  caught up with the two of us.  I am so fatigued that I cannot even remember where I left off last!  

Ellie and I stayed up "late" on New Year's Eve

Clonidine.  That’s right.  After a week of not hearing from Ellie’s neurologist, I got a text from CVS stating “ELLIE your prescription is ready for pick up”.  This is how I learned that we were going to start using clonidine to help Bear sleep (and stop her Tenex).  It was nearly a full week after I picked up the prescription that the neurologist’s nurse called to tell me that we need to switch Ellie to clonidine.  My confidence in the neurology department was minimal at best, but well, there is really no need for me to finish this sentence.

The Neurontin did not help at all and in fact, it made her have great difficulty falling asleep.  Once she was off of that, she returned to falling asleep relatively easily on most nights.  At first, we thought that the clonidine was helping somewhat. . . until it wasn’t.  Maybe it was the flu that gave us false hope that Bear’s days of early rising were behind us because once she was back in tip top shape, 12:30am, 2:00am, or if we are really lucky, 3:30am were her wake up times.  

With the amount of physical activity this child get, you would think she would sleep great.

I suppose I should be clear.  This does not happen every night, but rather 3-4 times a week with no discernible pattern.  I say this with confidence since I started a sleep log back in November. When Ellie wakes up at 12:30am, she does not fall back asleep again until 7:00PM.  You know, at night.  As in she is up for way too many hours.  It does not matter what time we put her to bed and no, she does not nap. I want to nap. Badly.

The new part: Ellie is now missing school because she is so emotional, agitated, and tired that I cannot possibly send her to the classroom.  I know that I touched upon the affect lack of sleep has on her behavior.  Sort of like her ADHD on steroids.  It is almost as though I didn't give her Adderall.  She is not doing well in school.  My Ellie, she is capable of so much and we get glimpses of that on days when she has a sufficient amount of sleeps.  When we can see her awesome potential.  Yet, the other 50% of the time, she is trapped in a vicious cycle of oral seeking, jumping, impulsivity, inattentiveness, and grabbiness.  She cannot function at school and on those days, she is actually removed from the typical pre-k classroom.  As we begin to plan for her Kindergarten placement, we are having to take into account both sides of Ellie: rested Ellie and sleep-deprived Ellie.  The sleep-deprived Ellie is holding her back.

Yes, she is always this perky in the morning.

This past Wednesday was THE Sleep Appointment!!!!  An entire clinic dedicated to all matters of SLEEP!  After 2 months of anxiously waiting, Ellie had her consultation with a pediatric sleep specialist. As you can imagine, a sleep study has been ordered.  The surprising part?  She will have her study THIS WEEK!  In all honestly, I thought that we would have to wait a few months.

I miss this.  Ellie used to be such a good sleeper.

There are a few theories here:

1. Kids with neuro-psychiatric disorders such as ADHD, autism, and SPD have a higher rate of Restless Leg Syndrome and Periodic Limb Movement.

2. Kids with Down syndrome are at a higher risk for obstructive sleep apnea.  This risk is still high even if the tonsils and adenoid have been removed.  If Ellie needs a CPAP, we are in big trouble.

3. When this first started, Ellie was getting over a sinus infection.  At first, I wasn't too excited because sinus infections can affect sleep.  A few weeks later, I didn't think too much because school just started.  Yet, here we are 5 months later and it all goes back to that sinus infection.  I am not sure how it all works, but there is the possibility the virus triggered something. 

The original "sleepless in austin" post.

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