Fall 2012

Fall 2012
[learning to live a perfectly imperfect life]

The Road to Rylee's Tonsillectomy - Part 1

Some of you have expressed interest in understanding why Rylee had a sleep study done last fall, resulting in the removal of her adnoids in October, another sleep study done in May, resulting in removal of her tonsils this week. Well, for those of you who enjoy strolling down the "medical-history-lane" of someone else's child, here ya go!

Symptoms: Snoring
Doctor's Recommendation: Sleep Study
Course of Treatment: To Be Determined After Sleep Study


Last fall, Rylee's doctor recommended we have a sleep study done on her.  She was really starting to snore loudly, and we began to wonder if she was experiencing sleep apnea.  (Kids with Down syndrome are at a greater risk of experiencing OSA, or Obstructive Sleep Apnea, because of their narrow passageway of nasal/throat area and low muscle tone.  Many kids with DS also have enlarged tonsils and adnoids.)  Snoring is not necessarily a big deal to all kids, but it does put increased pressure on the lungs, which in turn puts pressure on the heart.  And, in Rylee's case, with her having had heart surgery at 20 days old and 3 months old, and now having a heart murmur and a moderately leaky heart valve, we don't want extra pressure on her heart.*

* I am not a doctor, so you may find my descriptions simple.  (And hopefully, if you are in the medical field, you don't find them inaccurate!) 

We knew it wasn't going to be easy, but we also knew we needed to see what was going on during Rylee's sleep.  So, we did what we could to prepare her.  I talked with other parents whose kids had done sleep studies to get any helpful tips; we took a tour of the "sleep lab" (a small hospital-like room at the sleep clinic); we got some of the exact medical supplies they would use on Rylee so she could do a "sleep study" on her babies at home.

In fact, here is Dr. Rylee, preparing her baby for our home sleep study.

They explained to us that they would need to put 6-8 sticky electrodes on Rylee's head, and then they would wrap her head with gauze to keep them in place and keep Rylee from tearing them out of her hair when she flails about in protest of the sleep study.   So, at home, we practiced just that... Dad and Carter even got in on all the "fun." 

We talked about the fact that she and I would be having a "sleepover" and that Carter and Dad would have a "sleepover" at home.  We said that Grandma Cindy would even come for awhile (until she fell asleep) to help me hold her down while they got her hooked up to everythingvisit us!

But, no matter how much you talk about it... no matter what you do to prepare them... it's just different when you walk into the room and see all of this on the bed.

Well, I'm not much for bribery.  That is, I wasn't much for the idea of bribery... until I had kids. No, really, I do try very hard not to resort to bribery.  But, there are times... and this was one of them.  I had my bag backed.  I had snacks and favorite toys and movies and whatever I thought would work.  But, nothing did.

Nothing hurt Rylee.  All they had to do was put all of the stickers with wires attached on her -- but, not truly understanding why they were doing it, and it visually looking very scary to her was enough.  She didn't like it.  No, I mean really not like it.  Unfortunately, we wound up holding her down to get the stuff on that we HAD to before she fell asleep.  (We could attach some of the stuff afterward.)  It was brutal.  I think it was worse on me than on Rylee, to be honest.

(No pictures for this portion of the sleep study... I may be talented in some areas, but holding my child down while they attach 817 wires on her while taking pictures to document the event isn't one of them.   Actually, I didn't want any photographic evidence of me holding Rylee down.

We got all the stuff on her head, wrapped her up, and then did everything we possibly could to distract her from the wires hanging from her head.  We just needed to get her to sleep. Fortunately, she was so darn tired from failing about that she fell asleep quickly, and hard, too. While sleeping, we were able to get the rest of the "stuff" on her.  And she didn't wake up.  Yes, a miracle.

Now, I'm not a sleep expert, nor do I claim to be one.  However, I am quite baffled by the concept that doctors can get readings of a typical night's sleep when someone (especially a child) wears all of this to bed.  And a strange bed, at that.

But, I guess that's supposidly what happens.  And, because I'm not a sleep expert, I will believe them. 

Rylee woke up the next morning, ready to get outta there.  Here she is, enjoying her favorite snack of Cheddar Bunnies (yes, for breakfast... remember I said I bribe if necessary) so we could get her "un-attached" from all the wires.  We took the poor kid home and soaked her in a bath to get the "stickers" off. 

We all breathed a sigh of relief to have the sleep study over, and we waited for the results.


Shari said...

Oh Carin: I can't imagine what she went through. It's hard enough for an adult to go through it in their hard-as-a-brick beds. All three of my boys had their tonsils/adenoids out by three years old due to apnea. I know she has other special needs, but I think you will see a difference in her once she's all healed up and sleeping so much better. It was like night/day w/ our boys.