Saturday, October 11, 2014

REM is Over-rated

REM is Over-rated

October 11, 2014

Any parent of a T1D child can tell you, sleep often comes at a premium.  A typical night for me used to involve checking the boys’ glucose levels at their bedtime and again at my bedtime.  Depending on those results, the cycle of the moon, what they ate for dinner, and the color of their underwear, I would determine if and when to check them again throughout the night.  Typically, I woke up at least once to use the restroom at which time I would go ahead and check on them.  Often times, I was forced to set an alarm for every 1.5-3 hours to check on them.  It’s almost like we’re in a perpetual newborn period, waking up every couple of hours, sans the newborn crying.  That’s replaced by Mommy tears.

Perhaps someone could argue this is or was overkill, however, too many times, I caught a crazy high or a dangerous unexplained low….a low that could have killed them.  So, their tiny lives are in our hands; we’ll do whatever it takes to keep them safe.  “Dead in Bed” is a rare but real and scary phenomenon.  Simply put, your body cannot live if there is not enough glucose in the blood stream, thus if a low went undetected during sleep and continued to drop, the T1D kid could die.  I don’t wish that on anyone, and I don’t think any of my family or friends want to find me rocking in a corner, sucking my thumb as I pluck my hairs out one by one…. Yeah, that’s pretty much what I think would happen if something happened to one of my babies.
Look at those faces!  Do you blame me?!

Recently, we began using the Dexcom Continuous Glucose Monitoring (CGM) system.  Unfortunately, the range of the CGM to the actual boy (receiver to transmitter) was too far away at night between our bedrooms, thus it was essentially useless to us to monitor the boys easily at night.  Well, unless I wanted to move into the living room on a permanent basis or put these nearly 10-year-old boys back in cribs at the foot of my bed.  Don’t think I didn’t consider it.

When computer geeks’ kids get T1D, they develop cool programming to make the Dexcom CGM readings feed over the net.  Some banded together and created Night Scout. Long story short, I looked it up and put Jerry on a mission to make it happen.  He tossed a few options my way…Options, technology and verbage that was WAY over my head.  My answer, “I want to be able to roll over at night and see their sugars so I know they’re ok”.  He made it happen. 
Much to my chagrin, every night does NOT look like this!

All that background for this:  The CGM and Night Scout has been a fantastic, albeit imperfect, solution to help us get a few more winks at night.  It’s so refreshing to be awakened by an alarm if someone is too high or too low or to roll over, see all is ok, then snuggle back up to the man and fall back asleep.

(My Mom fell in love with it when she stayed over with the boys while we took a short vacation.  And, I worried about them less knowing an alarm would wake her up if necessary.)

As Diabetes would have it, He still demands attention now and then.  Some nights, the alarm is going off like crazy which means I have to wake up and make the mouse cooperate with my confused fumbling hand to silence the alarm.  Afterwards I have to check them and intervene.  Fortunately, that is the exception, not the rule.

Last night was an exception.  After a busy day at the Zoo, where Asa went low for 30 minutes (He was 51 after 25 grams of carbs and 20 minutes; he got a "free" ice cream which was fine with him!), we had a heck of a night with Aiden.  He was high around 9-10pm, so I gave him insulin to bring his glucose level back into range (“correction insulin”). 

Around midnight, the alarming started.  63 and dropping. I gave him a juice box which he sucked down in his sleep.  Asa was 93, so I gave him half a juice box just for good measure lest I be up in an hour or two doing the same thing for him.

An hour later, I snapped awake to make sure his level had risen well on the monitor.  Good.  Dozed back off.  An hour after that, repeat of the first scenario.  66 and falling.  Another juice box. 

About the time I dozed back off, Jerry snapped awake and saw the low number, which woke me up and I assured him I’d already intervened. He did that twice during the night.

 (Side note:  Since the CGM monitors the glucose level in the interstitial fluid between cells, it doesn’t reflect a rise or fall quite as fast as blood.  Thus, the monitor won’t show the rise in the first 15 minutes like the blood does, so I wait 30-60 mins).

An hour later, both boys were steady.  By this time, it was 4 am.  At 0530, the alarm went off again.  55 and dropping.  Knowing I had to rise for work in 30 minutes, I got up.  This time the carb of choice was chocolate milk.  He showed steady around 115 by the time I got out of the shower. 

As one may have deduced, I was basically awakened every hour from midnight to 6 am either by an audible alarm, by my Mommy paranoia who needed to see that things were ok, or by my husband’s startle and shake.  There’s really no solid explanation as to why Aiden couldn’t keep his sugar up overnight.  Diabetes often defies logic.  That said, it must have been related to the level of exercise we had at the Zoo. Or, it could have been too much correction.  Or, the color of his shirt.  Who knows for sure?

Dreams?  Who dreams?  What is REM sleep again?  Who needs it?  Diabetes thinks it’s over-rated.

Yes, there are WAY worse diseases.  Yes, it could be worse.  But, we sure could use a cure so 
Mommies and Daddies like me can rest easy and not worry about our babies’ lives.  Every. Night.
Support us for a cure today!


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