You might remember reading about our sleep study (read about it here) that was done this past November. Well, yesterday, we received the results. And let me tell you, it wasn’t was I was expecting or all that thrilled about.
We met with the pulmonologist and he said that yes in fact, Jana has mild sleep apnea. She basically pauses in her breathing at least 4.5 times per hour. He was actually pretty confident that number is probably higher on a daily basis. Jana didn’t reach dream state during the study. Maybe it was the 1,00o cords strapped to her tiny body that just wouldn’t let her relax enough. (Please read that last sentence with a very deep sarcastic tone!) That was it, it was our answer to why it seems like she just can’t sleep, no matter what the day looks like.
What’s the culprit? Her adenoids and tonsils. They are taking up way too much precious space in her air ways, and must be fixed. How do you say we do that? Well there are two possible solutions. We can try a slightly experimental way of using steroids and sprays to try to shrink them. (Yes, her adenoids and tonsils can actually shrink! Crazy I know!) However, there is no research that shows this method works with children with DS. He feels that the surgery would be the best rout to take because it will also benefit her overall breathing and help prevent her from getting sick so often. The ENT will be the one who figures out the final outcome.
We currently have a follow up apt to see the ENT late March. Her pulmonologist doesn’t want us waiting that long so he is trying to bump up that apt. Also, her cardiologist will need to sign off on it to make sure her heart can take this procedure. (Which yes, there is still a small chance she will need heart surgery as well…she’s going to give me a heart attack!)
So here we are. After being ridiculously lucky and not having to have any surgeries or procedures, Jana will go under the knife. It is a very routine procedure and usually they can go home the same day. However we read they do often keep children with other health care issues overnight for monitoring. I am not happy with these results. I almost broke down crying when we heard the word surgery. She is only 19 months old, and the thought of someone cutting her tiny body terrifies me. But its for the better good right? I have to trust that God will bring her through it and she will be 100% better!! I’m also sure that she will probably have more surgeries in the future and honestly, we are very blessed that she is as healthy as she is.
This is just another thing that DS brings to our world. Sometimes she will be perfectly healthy, and sometimes we will have to watch her do things that are just going to hurt.