I know I've said this before but, I know we were warned we would be faced with different challenges with our little Aubrey, but sometimes I wish she had come with a special instructions book.
A couple weeks ago we noticed that Aubrey was waking up in the morning completely purple and ice cold. We found this to be quite weird since our house has been the same temperature it was all winter and she is still sleeping in her warm footie pajama's.
Our first thoughts were that she must not be getting enough oxygen during the night since oxygen issues are quite normal for her due to the asthma and the Down Syndrome. The problem we were having was by the time we could get her in to see her doctor, she was no longer purple.
We had been talking about buying ourselves an oximeter, that could help give us a better idea as to whether she was having breathing issues or not, so we finally decided it was time to pick one up.
So we bought one.
And it works great.
...unless of course, you are cold...
Which, she always is, when we are worrying the most.
After waking up completely purple multiple times in one week, we were able to get her in to the doctor while she was still in her "recovery stage". Meaning, her skin was no longer purple, but rather red and marble like. It usually takes a good 2 hours or more before her skin gets back to normal.
(this is her in-between stages)
The doctor arranged for us to have an at home sleep test done on her that night... thinking this could very well be a sleep apnea issue. Side note. Did you know 50-100% of people with Down Syndrome will be diagnosed with sleep apnea with about 60% being diagnosed by age 4? Link here. The reason for this being the larger tongue and low muscle tone issues found in most children with DS. If this were the cause of the purple skin, it most likely would be solved by simply removing her tonsils.
So the test was done that night. And guess what? She had a perfect night! Seriously?!? On average Aubrey's oxygen levels hang out around 94- 96 percent while awake and even lower when she's asleep and that night her oxygen was hanging out right at... oh 100%... almost all night long! She didn't wake up purple, and her nose was as clean as can be (which had not been the case for the 2 weeks before this). Ironically enough, her nose was back to running like a leaky faucet within 1 hour of being awake. GAHHH! I was so frustrated!!!
(Don't you just love that hairdo?)
Anyway, within a few days, she was back to waking up purple again almost every morning.
Monday morning I had a doctors appointment for myself which ended up working out so that our doctor was able to get an idea of what she has been looking like lately. Since we have been monitoring her pretty well and have been able to see her oxygen levels were staying up where they should be, we have started to think our issues are more in the vein/blood circulation department.
So our plan as of right now, is for us to keep watching and also to keep record as to when she is having issues. If things continue to happen as frequently as they have been, our next step will be for us to take her to see her cardiologist.
We are crossing our fingers that we won't have to make that appointment anytime soon...or better yet, not at all.
And now you know.
