Friday, March 6, 2015

Maddy and Sleep: Round 2

Maddy coloring in the waiting room.
 
We went back to the Mayo clinic this past week to do another sleep study. Have I mentioned I really hate sleep studies? Maddy does well for the most part. The real struggle is holding her down while she screams the whole time the tech is gluing the sensors to her head.

Overall, Maddy puts up with it. She has a stuffed Eeyore that she doesn't show huge preference for until she's in a situation such as this. She uses him for comfort in these cases. She never really does that in any other setting. Thank God for Eeyore!

Long story short, we learned two things. First, they retested Maddy's iron levels again. She is still pretty low. The doctor recommended we use a liquid iron supplement, as low iron can cause restlessness during sleep and hyperactivity during the day. That explains a lot. Second, although having her tonsils and adenoids taken out fixed the obstructive apnea, she still has central apnea. Meaning, her brain is not telling her to breath for a few seconds before it kicks back in. She's still having around 20 of these episodes an hour. Yikes!

So, what does that mean for Maddy? The doctor wants her to try a CPAP mask at night. I'm not sure how in the world we will make that happen, but clearly we need to try. I was doing alright with all of this until I Googled CPAP masks for kids. Seeing the options of masks strapped to the heads of little ones is hard. Especially when I start imagining having to strap one to Maddy's head.

In fact, it's hitting me as I'm writing this and I'm crying. I don't know why this particular issue has hit me harder than the others. I think maybe it's because we keep getting more and more symptoms or separate health issues to deal with, but we are no closer to a diagnosis. We still don't know what's causing these underlying conditions, or if there is anything specific causing them all. We just don't know. So far, we haven't had to put Maddy on any permanent medications and/or equipment.  That's clearly going to change now. Perhaps that's why these results are hitting me so hard.