Late Night Conversations

Sometimes at night when I go into Kortnie's room to check her blood sugar she half way wakes up.  When she does, she usually has something funny to say.  Last night made me smile.

I went into her room and she must have been lightly sleeping, because before I could even climb up on the stool I keep by her bed (she sleeps in a top bunk) she sat up in bed.  She was holding her stuffed giraffe.  She handed it to me while I was getting her poker out and loading the test strip.  I took the giraffe from her and said something like

"let's check your blood sugar" 

 

"what is it?"

 

"it's your giraffe"

 

"what?"

 

poked her finger, "a giraffe"

 

sucked up the blood with the strip, "oh, a giraffe?"

 

4....3....2....1, 265  "what does it do?"

 

"it's your baby, you got it from girl scouts"  I made the giraffe kiss her on the nose

 

smile-giggle

 

I pushed her over a little, handed her the giraffe and told her to go back to sleep

 

she hugged the giraffe close and rolled over

 

I gave her a bolus of insulin and covered her up whispered, "good night, I love you" I covered up Stasia in the bottom bunk, kissed her forehead and took myself to bed.

 

 

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%.

Bunk Beds/ 2 am BG checks

This is Korky in her bed, we put these bunk beds up before the big D came into our lives. I am 5'2" and I hate when it's my turn to do middle of the night checks. (I do those 2 or 3 am checks way more often than Daddy does since he has to get up and acutally leave the house to work) Korky is the younger sister and she loves being on the top bunk, the older sister loves being in her cave on the bottom bunk, there's no convincing them to switch. Notice the step stool, really it's an old broken chair, I pull it over to the bed when I have to do checks. See the shelf in the top right corner of the picture? It was orginally put up to hold stuffed animals, but if you look close you can see a stash of Juicy Juice and Smarties as well.

Here's another picture, a bit more up close, you can see the water bottle she keeps handy in this one so I put it in, not to mention she's just so pretty and cute.

And this last picture shows the "low" stash, some Juicey Juice boxes, Smarties, and a box of chocolates that she got for Christmas.


Now, here's my question. How do you do the middle of the night checks? I read your blogs and nobody really mentions anything about the kid waking up when you go to check their BG unless they wake up first because they are feeling low or high on their own. I have to say that 99% of the time I go to check Kortnie she wakes up, I almost always try to check her without waking her, but she always seems to sense it and pulls her hand away. I've tried doing her toes but usually I can't get to them and if I can she'll still wake up. I've read where some parents can even do site changes while their kid is sleeping. So, tell me what am I doing wrong? I go in and open the case, I can get the poker ready, get the strip in the machine and grab her hand then it seems as soon as just the poker touches her finger she's jerking her hand away. Then I calmly tell her, "it's time for a check". Some nights she'll get up and just poke her finger and let me collect the blood on the stirp, then she'll lay back down and go right back to sleep. On those kind of nights she's usually "normal" or maybe a little on the "low" side. But then those other nights, she fights me, she's in a sleep haze and doesn't actually get her finger poked, no blood will come out, you try to help her and she gets mad, it's a fight and by the time it's over I'm wide awake and can't get back to sleep. Usually these nights she's high. Then there are the nights when I can go in and poke her finger and she never even wakes up at all. These nights I like because I don't have to wake her up, and I don't have to fight her, but they also scare me because I'm afraid she's low and that's why she doesn't wake up. Usually on one of these nights she is either low or super tired from a busy/fun/long day. Then there's dealing with the lows, sometimes its super hard to get her to drink down a juice box, other times she coherent enough that she can even decide if she wants juice or smarties. Dealing with the highs isn't bad, I can just use the remote to give a bolus, but if I end up having to get her up for a site change, that's not so fun.

So I guess what I'm looking for is some tips on how to do these middle of the night checks, maybe we can make it a blog topic, everyone plan a blog about tips for these middle of the night checks, or if you've done one already send me the link to it. I'm curious! Any tips you want to give, how do you deal with bunk beds? How do you deal with fights? How do you not wake up the other kids in the room? How do you do the check with out waking up the D-Kid? How do you deal with the lows? (Acutally I've read about dealing with lows in the middle of the night quite a bit, doesn't look like it's much fun for anyone) Please and Thanks!

Now one more thing, for my readers who aren't D-moms but maybe family or friends. I don't check her every night (GASP!) I know! However, I do have a way of deciding if I'm going to do the check, depending on lots of factors, what she ate for dinner and bedtime snack, how her numbers have been running the past few days, if the site is new or how long has she had it on, how old her bottle of insulin is, things like that. On a normal evening we'll check her around 5ish at dinner time, then again around 8 at bedtime, then Brian or I check her around 10 or 11, or whenever we are headed to bed ourselves. It's at that 10 or 11pm check that I use all those factors mentioned above to decide if I'm going to need to do another check sometime in the 1-4am range. I'd say I probably end up doing a 2-ish-am check 4 or 5 nights out of 7.