Saturday, June 2, 2012

Swallow and Sleep Study Results

Madalyn had a swallow study and a sleep study last week while we were in Denver.  The girls had a great time playing while we waited for her appointment. She did pretty well during the actual procedure which was a relief.  You just never know how things are gonna go with a three year old, right?!

The good news...  Madalyn has definitely made a little progress with her swallowing issues.  The bad news...  She seems to have regressed with her sleep issues.  I'm not actually sure she regressed.  I think maybe we did not get all the info we should have.  Either that or someone didn't do a good enough job spelling it out for us.  Ugh.

At her swallow study last June, we were told she had to have all liquids thickened to a half-nectar strength mixture.  She was aspirating silently, which was news to us.  We really had no idea that she was aspirating at all!  We weren't thrilled about it, but we started thickening all her liquids. No big deal really. 

Her sleep study (also last June) revealed that she had some apnea and that her O2 levels were dropping significantly while she slept.  They told us she needed to be back on oxygen at night.  We really weren't thrilled with that either... but again, it was relatively easy enough to take care of.  She was tolerating the canula and so it was fine.  They also recommended that she get her tonsils and adenoids out, which might help with her O2 levels.  That is pretty much all we understood of the results last year.  
Besides the fact that it was a very traumatizing experience for her me....   :)

We didn't like the idea of surgery AT ALL (who does?), so we put it off.  But we finally got it scheduled, and she had her tonsils and adenoids out last December.  The ENT also did a scope at that time, to check out what her trachea looked like.  We had been wondering about her tracheomalacia and what damage there was from her TEF (tracheoesophageal fistula) surgery at birth.  The main thing we were concerned about at that point, was that the surgery would help reduce her susceptibility to every single respiratory illness she was exposed to.  

And it has seemed to help!   She did really well this winter... after she finally recovered from the surgery/pain issues.  We have seen soooo much less in the way of boogers and snot!  Woot!  She has been pretty clear and that has been WONDERFUL!!  

They wouldn't give Mark too much info the morning after her study except to tell us that her O2 levels had dropped to about 70 at least once.  They said we had to wait to hear from our doctor about anything else.  Finally the other day I got a call from the sleep study doctor at Children's.  I spend about 35 minutes on the phone with him while he explained everything.  I was seriously overwhelmed after that conversation. 

Long story short...  They said that my sweet little peanut has severe sleep apnea and that she needs to be on CPAP.  For those of you who don't know exactly what that means, here is the definition:

CPAP is Continuous Positive Airway Pressure. It is commonly used to treat obstructive sleep apnea by providing a flow of positive-pressure air through a mask to open the upper airway while the child is asleep. The flow produces an air cushion that keeps the airway from closing shut. The goal of CPAP is to enable the child to have regular or normal breathing, eliminate snoring, and restore normal sleep patterns

Madalyn has been on CPAP before...  Here is a picture of her on CPAP when she was just a week old. 

Anyway... now we're gonna have to head back to Children's for a sleep clinic to get her fitted for a mask that we hope and pray she will tolerate.  Her airway is basically closing while she sleeps.  She had 35 episodes in just 1 hour during her sleep study where she had to partially wake herself up and start breathing again.  That makes me so sad for her.  :((    We had NO IDEA that her apnea was that severe.    

At this point, we are not sure what to think.  Anyone who has any experience with sleep apnea (especially in young kids with DS), please leave us a comment.  Or you can also just email me.  I would especially love to hear from anyone who has had to put their little one on CPAP, how they tolerated it, and any tips/tricks to get a 3 year old to keep a mask on her face to sleep, etc.    :)

We of course would appreciate any prayers for Madalyn.  This could be a long-term thing!  There are some possible surgical procedures that can help with her apnea.  But we have yet to talk with the ENT about what he thinks.  Please pray that we will make the best decisions for Madalyn, whether it it the less invasive CPAP or surgery. Thank you!!  :) 

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And your ears will hear a word behind you, "This is the way, walk in it", whenever you turn to the right or to the left. Isaiah 30:21

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Psalm 139:13-16

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.