Friday, December 10, 2010

Why a sleep study?

What a difference 6 years make.  Morgan's last sleep study was right after she turned 2 years old.  It was her third one in her 24 months of life.  When Morgan was born 8 years ago, I didn't know about blogging or have the support of more than 200 friends on facebook who also had a child with Down syndrome.  But I did have books on Down syndrome.  Books that focused on the potential health problems associated with Down syndrome.  I wanted to do everything that I could for Morgan and wasn't sure what I was supposed to be doing differently with her.  I kept waiting for her Early Intervention specialist to let me in on the secrets of parenting a child with Down syndrome.  They kept telling me the same thing.  Treat her just like you did your other children.  Sing to her.  Rock her to sleep. Feed her.  Love her.  Read to her.  Play with her.   Remember she is just a baby.  I now know they were right on with their advice.  But a lot of those first years were focused on other things.  Heart surgery.  Tube feedings to help her gain weight.  Physical therapy.  Speech therapy.  Occupational therapy. Doctor appointments.  Waiting for milestones.  I would do it differently if I could do it all over again.  I wouldn't have worried so much about gross motor development and physical therapy.  And I wouldn't have assumed she was going to have every possible health complication associated with Down syndrome.  I remember one time when my mom was rubbing her back and I kindly mentioned to her, "my book says that most babies with Down syndrome don't enjoy being tickled.   It's too much of a sensory overload."  She quit tickling her back after my not-so-subtle hint.  I have now learned to let Morgan tell me the things she does and doesn't enjoy.  And it just so happens that one of her favorite things is having her back tickled. 

Among many of the possible health problems listed in my book was sleep apnea.  The medical authorities in the book suggested a sleep study by the child's first birthday.  I think that was right around the time Morgan had her first one.  She screamed and screamed for at least 4 hours and then finally fell asleep.  Unable to breathe out of her congested, snotty nose as a result of crying for so long.  I don't remember the specifics of the results from that study but I do remember she was de-satting a little bit and holding her breath at various times during her sleep.  They also mentioned she wasn't getting enough rem sleep and staying in too deep of a sleep for too long.  Um, yeah, she was just a little exhausted after screaming for 4 hours with restraints on her arms and not being able to suck her thumb.  They suggested a follow up sleep study in a year.

We went back and had a similar experience.  She screamed for a few hours and I decided I was going to take her home.  I went and told the tech and they got a sleeping pill ordered for her.  She finally fell asleep.  Her results showed mild to moderate sleep apnea but her oxygen levels were borderline which meant she didn't need oxygen or cpap.  They recommended having her tonsils and adenoids removed and then a follow up sleep study.

She had the surgery the next month.  I love this picture!  This is in the exam room while we were waiting for the doctor to come and take her into surgery.  Gavin decided to try out some of the equipment and Morgan not appreciating being his student.

The follow up sleep study went much better.  They gave us a prescription for a sleeping pill that she took before we left for the hospital.  They got her all set up and she fell asleep pretty fast.  The results showed mild sleep apnea with improvement after the T&A with a recommendation of annual sleep studies.

So like an obedient, compliant parent, we took her right back for her annual sleep study.  6 years later.  I just kept putting it off, not wanting to do it again.  And it didn't help knowing that it's an expensive procedure.  But it just seemed like it was the right time to do it again this year. 

I didn't say anything to Morgan about it until a few hours before we were going.  She was not happy about going to the hospital.  I promised her there would be no pokes, no owies, no shots, just stickers.  About 15 minutes later she said, "Guess what, guys?  I'm not sick.  No hospital today!"  We checked into the hospital at 8 pm.  They let her pick out a few movies to watch while she fell asleep.

Excited to be able to watch Barbie Nutcracker and Shrek 2 in the comforts of her new bed.  She started asking for food.  Your child has been in the hospital too much when they know they get to order food from their bed.  Unfortunately for Morgan, food service to your room is not part of the sleep study program.

She didn't want the techs to touch her with their soap.  She's heard those reassuring words too often.  "Just a little cold wipe to clean your skin" only to be poked for an IV or blood draw seconds later.  We soon learned the only way those leads and stickers were going to get on her legs was if she did it.  It kept her busy and distracted enough that she didn't even seem to notice the tech covering her head in leads.

Another improvement since the last time we did the sleep study-- an iphone to distract her while they got her all hooked up. 

All ready for bed!

She did so well.  We ate some fries.  Watched Barbie.  Told her a few bedtime stories and off to sleep.  The techs came in every few hours to adjust stuff and woke us up but other than that there were no complaints.  They came in at 5 in the morning and told us it was time to wake up and go home.  Then a lady came in the room and poked Morgan's finger for a carbon dioxide level.  I felt so bad after I had promised her no pokes.  She took it well and was excited to go home and go back to sleep in our big bed.

Now just waiting and hoping for good news.

Updated post after several comments about their doctor not ever suggesting a sleep study for their child so their child must not need one.


Becca said...

Oh, those pictures of her when she was little are heartbreaking. Poor little thing. But what a brave girl this time!! We've never gone for a sleep study. I never had any reason to believe that we should. I hope your results come back with no issues!

Kristin said...

Hope you get good results.
Max hasn't had a sleep study and no one seems to think he should, so I guess we won't :)

Brittany said...

I'm glad it went so well! Love all those sweet pictures of Morgan too. What a trooper she is! Hope you get a nap today!

Jen Currier said...

I'm so glad that she did so well this time around!! Looking forward to hearing some GOOD news soon. And thank you for posting about the things you would have done differently: It helps me relax just a little bit while my guy is still little and know that eventually he'll grow and eventually he'll walk! (He's growing, but he's a peanut. :)

Wren said...

I needed to read this post today! Lately I have been feeling like maybe I'm not doing enough for Sutter and I should be requesting more PT, OT, ST....more something! We have PT once every 4-6 weeks and we have DT once a week. Our DT is a licensed ST so she will start doing more ST when he gets a little older, but our appt time and schedule won't change it will just be added. The thing is I think that's enough for right now...I like that he's just a baby. We play, I let him play alone, we read book, sing songs....I really do treat him the way I would treat a typical child. Sometimes I just can't help but wonder if in a few years I'll look back and wish I had done more when he was little....and you just answered my question...thank you!

Morgan looks so sweet in all of those pictures! I'm glad there weren't as many tears this time around. Hope the test results come back quick and bring good news!

Grandma Bethany said...

Oh I love going back in time and seeing tiny Morgan! How big she has gotten and look at all she has helps having wonderful and caring parent's and siblings! How cute she remembered getting food! Here's to Morgan and our brave little girl!

tekeal said...

glad things went better this time around... what a sweetie.

Lacey said...

Look how good she did! I hear its usually harder when they are older because they know what to expect. I always wonder how they expect people to fall asleep with all that crap on their face, I sure wouldn't!

tmehraban said...

I'd be pissed off too if I had those things on my head! Good luck. She's such a beautiful girl!

Meghann said...

I brought the sleep study up again with P's doctor and once I said 80% of children with DS have it, he was completely supportive. We're waiting until next year to set it up so flex spending can cover it. The recap of Morgan's earlier sleep studies doesn't make me very excited. I will remember to ask for a sleeping pill if he puts us a fuss, which he will.

It might be worth it if I can get a cute picture like the one of Gavin playing doctor with Morgan. SO CUTE!!!

heather said...

P.S. I just have to add that odds are no doctor will ever suggest a sleep study for your child. They have no idea how common sleep apnea occurs in Down syndrome due to their floppy airways unless they are a specialist. I had to explain why I needed the referral to my pedi. Then I went to see Dr. Durham (the pediatric Ds specialist in Utah) and the first thing he asked me after he reviewed her chart was when I was planning on doing another sleep study since she hadn't had one for 6 years. The pulmonologist I originally saw when Morgan was a baby was adamant that every child with Ds should be having a sleep study every year. It is the silent cause of irreversible pulmonary hypertension and the symptoms don't come until it's too late to do anything about it.

Ok I'll get off my soapbox now. :)

DKAZ said...

What a sweet little face! Both the baby ones and the six year old ones. I think it's great that you posted about the things you would do differently if you did it again. It's hard with a healthy child to feel like you are doing everything right, let alone a child who could potentially have so many health challenges. I'm sure so many of your friends and strangers who see your blog will appreciate that. Glad this last time went well.
On a related note, I can't wait till you get your new iphone for Christmas!

Tara said...

Thanks, Heather, for the additional info in your comment. I've been waffling on the sleep study for Eon. The Ds ped recommended it, but he doesn't have large adenoids or tonsils, so I didn't think it was necessary. He has been increasingly restless during the night, though, and tired when he gets up, so I was considering it. I think I'll get the ball rolling this week. :)

iColossus / Monster said...

Super cute pics, love the one of Daddy lookin' in her ear!

Amy @ OurScoop said...

Poor thing. I had no idea about sleep apnea. How soon will I need to get Frankie checked? Thanks for educating me!

I was so glad to read that you wish you hadn't worried so much about physical therapy and gross motor skills with Morgan. Last time DDI came out I was so excited to show her what Frankie had accomplished in a month and it seemed like she was more focus on what he isn't doing yet.
I'm still enjoying him as he his all the while working on him with things. I'm trying not to stress about it.

Good luck with the sleep study!

Sweet Pea's Mommy said...

Thank you for letting me know about this post! Looking forward to getting to know your family!