It's been a long time since I've written. We've gotten a lot of Maddy's test results back from the Mayo Clinic. It's taken us a bit to process some of them. We got so many results at one time. Not to mention that life has been crazy in general lately. Basically, there are two main issues that came up out of everything. I'm going to break this up into two different posts, as there is so much information.
The most important result (at least to me) came out of the sleep study. The sleep study was a crazy experience to be sure. For those that have never done one, it is not pleasant by any means. The technicians literally glue 13 plus electrodes to your head. In Maddy's case, I had to hold her down in a chair so the tech could use industrial strength stinky glue to put these little metal electrodes on her head. I'm sure it hurt to have those things stuck down. With Maddy not being able to talk, it was that much worse, as she can't tell me if it hurts or if she was scared or confused. I thought for sure she would never sleep connected to all those wires, but when it was all said and done, she was so worn out from the whole ordeal that she was able to fall asleep.
When we got the results a day later, we found out Maddy has sleep apnea. She has both central apnea and obstructive apnea. My understanding from the doctor's explanation is than central apnea is the brain simply forgetting to tell the body to breath. Maddy had a few episodes of this type of apnea throughout the night. These episodes lasted only seconds and it is thought that she will eventually grow out of them all together.
Maddy also has obstructive apnea. This means that something is obstructing her breathing. She had an average of one obstructive apnea an hour. I didn't need the doctor to tell me that was a crazy number. The doctor noted that most of the time this occurs because either the adenoids and/or tonsils are enlarged and blocking the airway. He asked if we had ever had a MRI done. We told him Maddy had gotten one approximately 2 or so years ago and that it should be in her file. The doctor pulled up Maddy's MRI right there in the office. He told us he thought that her adenoids looked big already then. Yikes!
Long story short, the sleep doctor told us that we had to follow up with an Ear, Nose and Throat specialist. He also told us that he would recommend that Maddy have both her adenoids and tonsils removed and if the ENT didn't agree, he suggested we get a second opinion.
The results of the sleep study really made me feel vindicated. I've felt for years that her sleep was not normal. It took me that long to convince a doctor of that fact. Every time I told a doctor that I didn't think she slept good, that she wakes up a lot at night, that she's had ongoing issues since she turned 14 months, etc.; I would get brushed off. "She's just going through a faze, she'll grow out of it," were the phrases I most often got told. But here was proof in black and white that a mother's intuition is always right.
Hopefully, the ENT visit will finally address the problem. I know that the sleep issue isn't a diagnosis. It's not a cure all for everything that's going on with Maddy. However, we have seen Maddy make much faster development milestones when she's been getting good sleep. The possibility of her actually getting good sleep nearly every night has me wondering how much that can help improver her life, both at home and at school.
