Kortnie at the 2011 JDRF Walk to Cure Diabetes, Tempe Town Lake, Tempe, AZ

Tuesday, November 13, 2012

Day 13 - Something Taboo - Dead in Bed Syndrome

Today's prompt is to write about something Taboo.  I want to write about something called Dead In Bed Syndrome.  I consider this taboo because I don't see it written about very often.  We don't talk about it very much, unless we hear of someone who has died, due to Dead in Bed Syndrome.  When Kortnie was diagnosed, I wasn't warned of this, the doctors and nurses we've seen have never mentioned it.  I found out about it maybe a year after diagnosis, once I'd joined some DOC online groups and made some online friends. 

Dead in Bed Syndrome is defined as...

Someone with type 1 diabetes is found dead in the morning in an undisturbed bed after having been observed in apparently good health the day before. No cause of death can be established. This is the typical situation of the "dead in bed" syndrome, a very tragic outcome which leaves the family with many unanswered questions: Why, when, how, could it have been avoided?

I have heard of it happening more times than I care to count since I've heard about this.  Usually if you see a blue candle burning on my Facebook page, someone has passed of this, and I don't light my blue candle every time either. 

Dead in Bed Syndrome, this is why I try to check Kortnie's blood sugar at night.  I wouldn't go more than 4 hours during the day without checking her blood sugar, so I check it at night too.  There are times when I've caught a low and had to sleep feed her juice or smarties, or when I've caught a high and had to give her more insulin.  There are times when I've slept through my 2:30am alarm or when I've turned off my alarm clock and not gotten out of bed, but I usually still end up getting up around 3:30 or 4am and going to check her anyways. 
I am not saying that everyone with a Diabetic kid should get up and check the kid in the wee hours of the morning.  That's just what I do, and Dead in Bed is one of the reasons why.
I don't know if I will do this for as long as she lives at my house.
I don't know when I'll expect her to do it.
I don't know if when she is in college I'll still get up and call her and tell her to do it.
I don't know if when she's married if I'll expect either her or her husband to do it.
I don't know.
Today, totally random, in the middle of the afternoon, her blood sugar was 36, she didn't even feel it.  I noticed that she looked kind of pale and glassy eyed and was acting kind of funny so I told her to go check.  Thirty.Six!  That is way too low, anything under 80 is too low.  There was no rhyme or reason to it either.  She has been 31 and 29 before and not felt it.
I am not sure if she'd wake up if she was low.
What if she went low like that in the middle of the night, just because Diabetes is fickle like that?  And didn't wake up to have some juice. What if she didn't wake up at all?
I don't know, there are too many what if's. 
I don't talk about this, I talk about how Diabetes sucks, how it is weird, how it is expensive, how it is fickle, how it is hard, how it makes us strong.  But, I don't talk about how it scares me.
Diabetes Fact of the Day
6% of deaths in Diabetes patients under the age of 40 are due to Dead in Bed Syndrome.
6% is relatively small, but I don't want to be in that 6%, I don't want anyone to be in that 6%.

1 comment:

  1. That is so scary!!!
    I remember always worrying about SIDS when my girls were babies!!
    Lots of prayer to you and for you!