1:37 am

In the fog of my blissful sleep, I hear something.  It's important.  I recognize that as I slumber.  I try to remain asleep, but my mind searches for the implications of the sound.

It's 1:37 am.

My subconscious knows to to be on "high alert".  Joe just participated in a power skating camp this evening...with a failed site...which resulted in a HIGH blood sugar... which required a new pump site...and a correction dose of insulin.  This may, or may not, end up with unstable blood glucose readings.

Unfortunately for me and more importantly Joe, this will be a rough diabetes night.

It's 1:37 am.  My mind and my body wake from the alarm.  Joe is low.  It's the "MEMMMP...MEMMP...MEMMP!! - Your kid is super friggen low...low alarm".  I'm still a little dazed from my slumber.  I catalogue the day.  The power skating, the site change, the correction are recollected.  This could be bad. 

I stumble into his room.  I'm tired.

I ready his glucometer with the test strip.  I lance his finger, as he sleeps.  The blood is wicked up the test strip.  He is 40.

I turn off his insulin pump for 2 hours.  Four glucose tablets are grabbed from the supply kept in his room for exactly this; our nights.  I didn't even need to coax him to chew the tablets.  In his sleep, he chomps on each tablet.  They are each consumed in short order.  His body knows ... it needs them to survive.

I plod back to my bed.  I lay down.  I know I won't sleep; he is too low for that.  I'll need to know he is OK.  40 is nowhere near "OK" when he sleeps.

I start on my left, turned away from my night stand where the CGM resides.  Eventually, I turn to the right.  I take a peek.  He's only 45, smooth.  I wait.  I turn.  It's about 2 am.  I turn.  50 smooth.  Still, I wait.  I know it will turn around.  I just need to wait a bit longer.  Just a little longer until I'll feel OK.  Just a little longer until I'll feel he'll be OK.  Just a little longer until I can go back to sleep again.  Back and forth I go, peeking at his number.  At 2:17, or so, 63...diagonal up.  The next time I check he's 115 ...diagonal up.

But, is he truly alright?

I need to check on him to be able to sleep.  I prop myself out of my bed.  I plod back into his room.  I want to check his pulse.  Weird, I know.  If it's his carotid (on his neck) it may wake him.  I take his wrist in my hand.  I feel a strong, steady radial pulse.

Finally, I can go back to sleep.

A glimpse of a rough night in the day-in-the-life of parenting my child who has t1d.

He's Resilient

Perhaps one of the most difficult things to explain to persons not intimately familiar with t1d is the unpredictability of our day-in-the-life.

This week...

Joe participated in a power skating camp.  The camp was two hours long.  It took place from 6:50 to 8:50 pm.  Now, this is one of those experiences where I might choose fiery hot pokers to be jabbed into each eyeball over the the planning, the anxiety, and the blood sugar carnage the camp could potentially cause.

The management of d' went something to the tune of reducing the basal rate by 80% for 3 hours; this was initiated an hour and a half prior to camp.  Joe would eat two peanut butter and honey sandwiches (100 grams CHO) with no coverage prior to camp.  Additionally, two Gatorades (60-ish grams CHO) were consumed during the camp.  I would drop Joe off at the rink.  He would get on his hockey gear to skate.  Meanwhile, I'd run an errand.  Afterwards, I'd drop by the rink to check on Joe; to check on his blood glucose.  Then I'd drive home; a 20 minute drive.

The first three days of camp went smoothly.  Blood glucose levels stayed between 120 to the mid 200s during and after camp.  Then last night happened.  I left Joe at the rink with Dexcom reading "High" (just over 250).  When I arrived home...

We've spent so much time on lows... teaching about lows, avoiding lows, treating lows, not being alone during lows, etc.  Highs are there.  Sure.  But, they don't typically pose imminent danger.  Joe wasn't feeling well at all with his blood sugar level at 471.  I think what happened was his site was failing.  The uncovered carbs, the decreased basal rate on a POD that was in the process of failing, well...I think that is what must have lead to the high.  When Dave arrived to the rink, this is what he saw...

Joe on the ice, trying his best to finish out his camp.  He's the skater closest to the camera; the one in the white jersey.  With his high and probable ketones he should have sat out.  I admire his "try". 

When he arrived home he was "HIGH".  His site was changed.  About 75% of a correction was given.  His blood sugar proceeded to go down to 40 within a couple of hours.  The basal rate was turned off, sugar was dispensed to a sleeping Joe... who then woke up about 15 minutes later due to the discomfort caused by the hypoglycemia.  This occurred around 2 am. 

Managing t1d is unpredictable.  Yes, there are days or even weeks where it seamlessly folds into our days and nights; this wasn't one of those weeks.  While I am grateful beyond your imagination of my gratefulness for the technology involved in t1d management, I am all-to-aware of it's limitations.

A resilient Joe living a day-in-the-life with t1d.

Anxiety, Courage, Bravery

This summer, in particular, I am aware of it.  Raising a child with t1d takes courage.  

This post, in no way is meant to take away from those living with t1d.  Persons with t1d are perhaps the most strong, brave, and courageous people I know.  I live it.  I watch it day in and out.  When you have a child you are there to love them, to teach them, to support them, to guide them, to comfort them.  To endure the diagnosis and the laborious management of this disease and then to pass on the management to your child is a tenacious process wrought with "what if's".  Yes, I know you should not live your life thinking about "what if's".  But, sometimes... a lot of the time lately, I do.  Joe is my child; my child who has a high maintenance, chronic condition that needs monitoring, management, and consideration every time he eats, when he is active, when he is sick, when he is sleeping, and so on. 

Something as simple as going to a friend's house for a few hours is not so simple for us.  Actually, I think it is simple for Joe; not for me.  Reminders are given regarding sugar sources and diabetes supplies.  Questions are asked and pondered by my t1d worrying gray matter. Will he check a blood glucose?  Will he count the carbs correctly?  Will he bolus for the carbs consumed?  Will he go swimming and then go low and perhaps have a seizure?  Will he have a low on his way home and be sprawled out, like a limp squid, on a sidewalk somewhere?  These thoughts fleet through my mind.  I push them away.  I have to.  I need to let him grow up.  I need to hope for the best.  I have taught him well; I know that.

The other night, after an exercise class, he wanted to go hang with peers a couple of streets away.  Of course, I was fine with it.  Did I worry?  You bet.  Post exercise, Joe has a higher chance of going low.  He took sugar with him.  It was dark.  Dave was traveling, so I was home alone.  I willed myself to stay awake until Joe came home safe and sound.  I left my light on; the TV blaring.  Worry of a low Joe in the dark streets of our neighborhood crept into my heart.  I texted him, I requested he check in with me when he came in for the night.  He did.  He said he took sugar a couple of times while he was out.  He was a 148 when he arrived home.  I have taught him well; I know that.

A week..or so.. ago..  Joe phoned me.  "Mom..we are going to bike to KFC."  His voice was laced with pride and excitement over the adventure of biking and the glutinous fast food consumption that lay ahead.  KFC is a few miles away.  He would be biking with friends.  He would be partaking in eating (yes.oh.the.horror).  My response was "OK..make sure to take your supplies."  Within a few minutes a sense of dread came over me.  The sugar he typically keeps in his supply bag was in his room.  He was biking a few miles with no sugar.   Thoughts of Joe low and unconscious splayed out in the middle of our town, after the bike ride or after a miscalculated bolus crept into my mind.  So, I grabbed the sugar, hopped into my car, and I drove the sugar to the center of town; to Joe.  The sugar delivery trumped possible embarrassment of my possibly dramatic sugar delivery tactics.  He didn't mind.  He knew it could've been needed.  When he arrived home from KFC, he was 88.  He boosted with Skittles, prior to heading out to swim with friends.  I have taught him well; I know that.

And, while I have taught him well, there are just so many details that can go wrong, that can be overlooked, that can be misjudged with t1d.  It scares me, the thought of someday sending him out on his own.  Preparing him and letting him practice what he has learned for a few hours at a time will hopefully prepare me for a most difficult task; letting him go and trusting he will be OK.

An honest look at the anxiety, the courage, and the bravery involved in the day-in-the-life of parenting a child with t1d.