Friday, July 29, 2016

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.

Wednesday, July 13, 2016

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.

Monday, July 11, 2016

The Tree

Yes, the title has nothing to do with the post.  I just loved the photo I took of the area where we waited out the low.

Over the past 10 years, diabetes, for the most part, has become routine in the day-to-day, the hour-to-hour, the meal-to-meal, the night-to-night.  It blends in and really, at times, doesn't seem to be too big of a deal until it stops your child in his tracks.  When it stops Joe from walking, well... that is one of the times t1d kinda becomes a big deal; I can't just pop him some sugar, scoop him up, and lug him around like I could when he was 3, 4, 5, 6..or even maybe when he was 7 or 8.

A few weeks ago...on Father's Day..

We had set out on a family hike with my sister and my brother and their families.  The day was warm, uncomfortably so.  Joe had recently checked a blood glucose and his number was in the high 100s.  He ate a snack.  We walked.  We then played at the water's edge of Lake Champlain.  The thought of a low fleeted through a brain synapse or two, but then drifted away as I enjoyed this time with my siblings.  Joe seemed upbeat, as he skipped rocks across the lake's surface.

When we readied ourselves to leave, to hike back to our cars, it hit and the quickly and resolutely stated "I feel low," was heard.

He was 40 something.  Skittles were munched.

He stumbled, trying to take a few steps to start the long, hot walk back to the cars.  He wasn't gonna make it just yet.  I knew from the way the first step went, we would have to wait this one out.  It was gonna be a bad low.  The family, there were 10 of us, moved on and started on the hike.  I directed Joe to some shade.  He plopped down and then proceeded to lay face down in the grass.  I gave him another fistful of Skittles.

He didn't complain of the discomfort the low caused him.  His focus was on missing time with his family.  He repeatedly attempted to sit up to ready himself for the walk, but was unable to do so.

He rarely complains of the physical discomforts associated with t1d.  Over the years, it has been the stopping or the waiting that have bothered Joe.  Diabetes care appears seamless to outsiders, but trust me there is way too much stopping and waiting involved; especially for a young, growing, active boy.  Stopping to check a blood sugar, to count carbs, to bolus, to do a site change.  Then there is the waiting.  Waiting for a low to release it's hold on your body.  Waiting for a stomachache to subside after a bad pump site and the subsequent ketones.  Diabetes can most certainly be a tester of one's patience.  And on this day, it tested Joe's.

Explaining the psychology of a low in Joe's day-in-the-life.

Saturday, July 9, 2016

Take That Growth Hormone

Growth Hormone is released from the pituitary, which is a part of the brain. Growth hormone counterbalances the effect of insulin on muscle and fat cells. High levels of growth hormone cause resistance to the action of insulin.  Basically, this means blood sugar levels will run high during periods of growth.

A week...or so, ago.. we visited Joe's endocrinologist...

Measurements were taken, values were obtained, a physical exam was conducted, mental well being was noted. 

Another 1.7 inches in height was reached; he is now taller than me.  A few more pounds of weight were gained.

His A1C was 7; down 0.3 from his last visit.

I'd say we are holding our own.

A day in the life of  growing UP with t1d.