Well, we heard back from our pediatrician who spoke with the specialist who works with pediatric neurology and sleep issues. She read Emily's reports and said that she is not concerned about the Carbon Dioxide level. She said they were borderline and not a reason to take out tonsils. She wants to see Emily and we've made an appointment for June 8th.
We are canceling the ENT appointment until after we see her. What to make of this.... we are basically in the same place. The doctor we saw that was concerned about her O2 levels specializes in adults and seniors. He did tell us this when we saw him but we did not know this meant he couldn't accurately diagnose her. Our pediatrician said it was past time for a second opinion and if the doctor's at Children's were not cooperating we were going to move ahead with another doctor. Her name is Dr. Litwin and she's in Denver.
I'm sure she'll want to run her own tests, do medication changes and other things but it looks like we are on the road to the VNS. We've done two sleep studies and they've come back normal. The only other thing left is that Emily's seizures are out of control. We've tried every medicine possible to no avail. It will be good to get a second opinion before we go forward though.
Hard to wait a month to see her but at least we know Emily isn't poisoning herself. Sometimes when it looks like a duck, walks like a duck, sounds like a duck, you just have to call it a duck.
My daughter has uncontrolled Epilepsy. There will be no miracle "oops, it's just this or that" solution.
Thanks for your prayers. We still need them.
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