The Road to Rylee's Tonsillectomy - Part 3

Symptoms: Snoring -- worse than ever before!

Doctor's Recommendation: Sleep Study -- yes, again!

Course of Treatment: To Be Determined After Sleep Study... sound familiar?

We did get our wish of a less-stuffed-up winter!  In fact, we sold some of our stock in Kleenex, knowing it would drop without our weekly purchases.  However, March came, and things started to change.

Rylee began snoring worse than ever before.  She started sleeping more but complaining of being tired all the time.  (And she never before had verbalized that.)  She began eating less and showing signs of lethargy at home and at school.  The only way to determine what had changed was another... (gasp)... sleep study.  Really?  Seriously? There's got to be another way.

But, her doctors were still set on needing "sleep study proof" that a tonsillectomy was necessary.  No signs of sleep apnea meant that tonsils would stay.  If she even showed slight apnea, her ENT said he would then feel justified in taking her tonsils.  And, he said, while he was in there, he would make sure her adnoids hadn't grown back.  Um... what?  Adnoids can do that?  Well, that's extremely inconvenient.

So, we don't need to elaborate much on sleep study #2, which was done just after school let out in May.   It was pretty much as miserable as the 1st one. I began "gearing" her up for another "sleepover with mom" (much to my dismay.) Unfortunately, the word "sleepover" rang a bell... and not a pretty one, either.  (Poor girl... she'll get invited to a real friends' "sleepover" someday and never, ever want to go!)

Here is Rylee, with her head wrapped (again.)  She was unhappy (again) and kicked and cried (again) and we had to hold her down to get everything on her (again.)  She calmed down enough to have a snack and watch a little Care Bear movie... 

After finally getting her to sleep, the nurse finished getting her ready.  Unfortunately, she didn't stay asleep like she did during the 1st sleep study.  Her attempt at pulling wires off was a drowsy one, however, and she didn't succeed.  A few more stickers here... a few more wires there, and somehow I got her back to sleep.   Amazing what a shot of vodka will do to a 5-year-old.

Again, here's Rylee... experiencing a typical night's sleep?  Um... okay.

Waking up the next morning was, well, just as it was the first time... playing a movie (that's what Rylee's looking at in the picture!) and getting her un-attached as quickly as possible.  Then, it's "hit the road" time.  I couldn't get us out of there fast enough.

So, we all breathed a sign of relief (again) that the sleep study was over, and we waited for the results (again.)

Wordless Wednesday

Manners... gone too far?

Today I ran into my office to grab a few things while the kids were eating snack.  They were both at the kitchen table, enjoying grapes, watermelon and water.

I heard a little "thud", which I knew immediately had been Carter's water bottle falling over on the table.

Then, I hear Carter say, "Saw-wee wah-dah." (Sorry water.)

Apologies to the water bottle.

What great manners.  But, have I gone too far when apologies are given to plastic?

The Road to Rylee's Tonsillectomy - Part 2

Results of Sleep Study: Normal; No Sleep Apnea

Doctor's Recommendation: Adnoidectomy & Placement of Tubes in Ears

So we get the results of the sleep study back.  No sleep apnea.  Really?  Are you sure?  Can you check again?

But, we still had the issue of snoring, as well as upper-airway congestion.  (Rylee is one huge cold from October to March.)  So, her doctor recommended removing her adnoids only.  

"Shouldn't we just remove her tonsils since we're already putting her under?  No?  Really?  Are you sure?" 

Tonsillectomies, in the "old days" (as I'm told, since I'm much too young to remember... no really, I am) were very routine -- they performed them on nearly anyone.  "So, just to recap, you'd like a Big Mac, large fries, and a Coke... do you want your tonsils removed, too, just since you're here?"  

Okay, so maybe not that routine.  But more than today.  Now, they are more conservative.  And especially conservative on kids with a more complicated health history, like Rylee.  

So, we were torn.  Do we push hard to have her tonsils out along with adnoids?  What if she has a difficult time with things and it wasn't necessary... then we have the pleasure of feeling guilt for the decision we made?  If later, she does need her tonsils out, then we'll be kicking ourselves that we had to do 2 surgeries.  Where is that darn crystal ball?  We talked with her ENT and pulmonologist, and they both recommended leaving her tonsils alone because of her "sleep-apnea-free" sleep study.

Okay, so let's just take out her adnoids.  And while we're in there, let's throw some tubes in her ears, just to help with drainage, etc. 

Recovery from an adnoidectomy is pretty quick... because your adnoids are high on each side of your throat behind your nose, they don't affect your eating/drinking (like removing tonsils.) So, you're in, you're put under, you come around, you're out, and you're home!  

Okay, simple when you're an adult.  More difficult when you're 4.  (Rylee had her adnoidectomy last October.)

We did all we could to prepare Rylee for the surgery... but surgery day came and we just had to get it done!  Here she is, shortly before surgery, playing doctor to the hospital bear.  "Now, see, Mr. Bear... you just breathe in and out really deep with this on your mouth, and then you'll fall asleep.  That's what they tell me anyway."

Rylee got a little dose of Versed before being taken to the OR.  (We didn't want her having a last-minute panic-attack.)

"Oh Dad... I'm getting a little drowsy from the medicine they gave me.  You know how you can tell? Because I don't care one bit that they're taking my blood pressure.  And you know how much that usually bothers me!"  (We get a blood pressure reading on Rylee once in every seven tries! She doesn't consider it to be a friendly little "hug" like the nurses say it is, and she hates it!)

We asked that either Jeremy or I go back with Rylee to the OR... when Jeremy saw the oh-so-flattering big white jump-suit and hairnet required to enter the OR, he kindly gave me the honors.  Rylee was okay with heading back for several reasons. 1) She got to ride in a wagon 2) She was a little loopy from the medicine (you can see it in her eyes) and 3) Mom got to go back with her... (not that she could tell it was me in my sexy outfit.)

Putting your child on an operating room table is not fun.  (Can I get a little Versed myself?) The nurses can be fabulous and reassuring... the doctors skillful and the anesthesiologist knowledgeable, but it's still tough. The medicine given to them beforehand helps, but for about 5 seconds, while the nurses hold the mask over their mouth, it's yucky.  Your child squirms a little, and their eyes get really big, as if to say, "Why are we doing this again?"  You blink back tears, smile, reassure them, rub their hand and then it's over.  Your child is out like a light, dreaming about bike-riding and ice cream.  The nurses politely shoo you out of the room, and you head out to the hallway.  But, while you take off your hairnet (so no one else sees you looking so fabulous) your eyes tear up, and you get a lump in your throat.  You hope your child doesn't remember those 5 seconds. You, unfortunately, will.

The surgery went well, and we got back to the recovery room as quickly as possible to see her. We were able to talk her into a popsicle... getting her to eat/drink something was our requirement for going home.  We had a tough 45 minutes or so until all the anesthesia wore off.

Here she is, not incredibly thrilled about life - or the IV.

"Okay, Mom... I'm a little better now.  I'll give you a smile, but I'm sure tired!  Let's go home!"

And home we went!  She took pain meds for a few days, but she bounced back very quickly! Fortunately, the experience did not scar her... she was quite excited about all of the "doctor stuff" we acquired, and for the next several months, Dr. Rylee performed various exams on dolls, stuffed animals, Moms and little brothers at our house!  (If you remember, Dr. Carter even put in some hours at the Griffith Hospital.)

 

We were hopeful that we were done with sleep studies, surgeries, and all things medical.  We looked forward to a winter of less stuffy noses and sinuses.

You can hope all you want... but sometimes, it just doesn't work out that way.

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.