Sleep Study Results

So, we were up bright and early this morning for Rebekah's appointment with Dr. G this morning.  If you haven't personally experienced Dr. G, he is a super energetic morning person with severe ADHD!!  I'm just kidding - I really have no idea if he has ADHD, or even if he is a morning person, but I can tell you that he has so much energy that he practically bounces from room to room.  He also changes topics with the speed of a ping pong ball.  :)  It was great, but my foggy sleep-deprived brain actually had to work to keep up with him! All kidding aside, he is very, very knowledgeable in his field, and super nice.  We really like him.

Now for the results.  Dr. G walked in with at least a 1" thick stack of papers from Rebekah's sleep study, sat down and said, "Wow, where do I even begin?"  Hmmmm.  Not the words we really wanted to hear to start off the appointment!  I'll start with the easy stuff first and then some of the more complicated.

First Rebekah has both obstructive sleep apnea and central sleep apnea.  The "events" (lingo for apnea episodes) average about 8 times an hour (for obstructive) and about 9 times an our (for central).  So, as you can see, she does not have one predominate type of apnea.  She's an equal opportunity kind of girl!  :)  If she only had one or the other of the types of apnea at the frequency above, she would fall somewhere in the "moderate" apnea range.  However, looking at the big picture, she has an average of 17 events per hour, which puts her into the "severe" apnea category.  And if that wasn't enough, she also has something called periodic limb movement disorder (PLMD), which basically means that she involuntarily moves her legs (and arms) all night.  Yes, I know; I've slept with her before.  Trust me, she thrashes!  :)

What is the next step, you ask?  The first thing we had done today was to have bloodwork done to test Rebekah's iron levels.  Apparently there are some links between low iron and PLMD in people who have heart problems.  Given Rebekah's heart history, we felt that was a good place to start.  If Rebekah's iron is low, she will begin taking iron supplements.  If not, there are some medications that can help control the thrashing so that she can rest more at night.

As far as the apnea goes, the name of the game is slow and steady.  We aren't going to pinpoint, diagnose and treat every issue in the next two weeks.  In fact, I'll be happy if six months from now we are on top of Rebekah's sleep issues!  For now we are beginning with another sleep study (oh, goody!) two weeks from tonight.  Rebekah will be evaluated using a CPAP (continuous positive airway pressure) machine which will forcefully blow air into Rebekah's nose to keep her airways open.  It will still be up to Rebekah's body to "breathe" the air in, but the machine will not allow her airways to collapse.  Big prayer request over the next two weeks is that Rebekah gets used to the mask before we use it.  It is a small, triangular shaped mask that fits perfectly over her little nose.  There are velcro straps that attach it to a small mesh cap that fits around the back of her head.  The cap and velcro help hold the mask in place.  During the sleep study, the technicians will be making many adjustments to the CPAP machine to try to get the optimal settings for Rebekah.  If the CPAP works well, great!  If not, we will be rescheduled for a trial on the BiPap (Bi-level positive airway pressure).  The BiPap would actually measure Rebekah's breathing and if she went for so many seconds without a breath, it would force a breath into her.  We will just need to see where Rebekah's needs fall and what type of treatment works best for her.

One of the pieces of good news we learned today is that Rebekah's EEG (measures brain activity) that was done during her initial sleep study did not have any red flags on it.  We haven't gotten the official neurologist's report yet, but Dr. G said if there was a huge "red flag" that he would be able to see it on the report.  We are very thankful for that good news!!

There is a little more information from the sleep study, but I am honestly exhausted and ready for bed.  I'm losing focus of what I'm typing!  :)  I will try to finish the rest of the update tomorrow, but in the meantime I will leave you with the first good video we have gotten of Rebekah since her vocal cord paralysis.  Since some of her words are difficult to hear and understand, I will post a translation below the video.  Enjoy!!

Jesus loves me ...I know

For the Bible tells me

Taggie!

Hey, shoes!

Hey, necklace!

No

Mommy, can you help me?

I need a (something that I don't understand)

Bye!

Deep and wide

Notice that Rebekah has her priorities - accessories, shoes and jewelry!  :)  I love that it so perfectly shows Rebekah's personality, even if it is hard to hear her voice.  If you really want to hear the difference, go back to this video where Rebekah sings part of Jesus Loves Me.  The difference is really amazing.  We have really gotten used to Rebekah's "new" normal voice, and every time I listen to the older video, I am just amazed at what her voice used to be.  Wow.

Please continue to pray for all of our little friends at MUSC.  There have been no significant changes today, and I know their families appreciate the prayer!

Nancy