One Third (It's a BIG "Hunk")

In response to "Overkill or Good Diabetes Parenting?"

Store hours?  I wish.

I wish that diabetes management had like store hours or something.  Like maybe Joe's beta cells could "magically" come back to life from 9pm to like 8am.  Ya know?  Like every night Joe's glucometer and insulin pump and CGM could put up a "CLOSED" sign.

Yea...right...

What is 8/24?

I believe it is one third.

I believe it is one third of our 24 hour day.

If it is one third of our day~in~the~life of living with diabetes, guess what?  It is one third of our A1C.  I guess I shouldn't say "our"...it is one third of my child's A1C.  One third is a big hunk of my child's well being.

I am not going to be wishy-washy here.  I am not going to say do what works for you and your family.  I am not going to.   I am going to say that I think night checks are part of managing diabetes.  I don't do night checks solely out of fear of lows and out of fear of the dreadfully named "Dead In Bed Syndrome".  I also do them for trending blood sugars and adjusting basals accordingly.  And.  I do them for correcting highs as well.

It is a third of one's A1C  during a chunk of time that would normally have "predictable activity" (sleeping), with "predictable carbohydrate intake" (not eating, because sleeping), and with, for the most part, a "predictable amount of insulin" (no carb intake, because not eating, because sleeping) on board.

Our nightly routine here is:

Dave checks Joe's blood sugar @ 11pm (the following assumes no IOB and no CGM):

• If Joe's blood sugar is less than 70, we treat by using the rule of 15s.
• If Joe's blood sugar is 71-100, we give 8 grams of CHO
• If Joe's blood sugar is 100-250, we do nothing.
• If Joe's blood sugar is greater than 250, we correct and then set an alarm to check Joe's blood sugar in 2 hours.

Dave or I checks Joe's blood sugar between 2am and 3am:  We use the same actions as written above.

A day~in~the~life of managing my son, Joe's, blood sugar at night.

"Good"?

My vision was tunneling, the periphery clouding.  I had to hunch myself over a bit in an effort to avoid passing out.  I was hoping the lady would stop talking and move on.  The lady was an acquaintance-y friend of mine.  She is the mother of one of Joe's school-mates.  I had not talked to her in a couple of years.

I had just popped off a 5 mile run without hydration.  The humidity and heat were elevated.  It was on July 4th.  I ran into this acquaintance-y friend of mine on the sidewalk about a mile from my home.  About a mile from hydration!

"How's Joe?"

"He's doing well."

"How's his diabetes?"

How to answer?  How to answer?  It's good?  I mean really?  Is it ever good?  Sure.  I can smile and pretend it is all well and fine and that Joe and I just luuuuvvvvvvvv checking blood sugars, counting carbohydrates, and changing pump sites and staving off lows, while avoiding the long-term complications of highs.  The easy answer... the easy answer is just like the response we all give when someone asks how we are doing in passing.  The easy answer is "good". 

Still feeling a bit passing-out-ish...

She (Joe's~school-mate's~mother) then went onto tell me about a childhood friend of hers. She had a childhood friend.  She had Type 1 Diabetes.  She did fine through childhood...grew-up...went to college.  She came home from college for a school break (Christmas Break?  I cannot remember)...she took a nap... she never woke-up...her mother found her dead ... dead from the diabetes.

Welp.  Good to know that I don't have to go with the "good" response here. 

"How's Joe's diabetes?"

The words "good" or "bad" are too polarized.  I need something more general to describe Joe's diabetes on most days.  But then there are some days that "good" sums it up.  And then there are days that the word "bad" is perfect.

My general answer when asked "How's Joe's diabetes?" will be:

Joe's diabetes bears watching and managing; not just day-to-day, but hour-to-hour. 

In response to Joe's~school~mate's~mother about her friend:

I live with knowing that there is that possibility that I will get "the call" someday.  You know, "the call" that your son was found down and has been taken by ambulance to the hospital.  I live with being as prepared as one can be for walking in on an unconscious (or worse) Joe.  I do not live in fear.  I just simply live knowing this is my reality. 

A day-in-the-life of trying to explain being a parent of a child with Type 1 Diabetes.

The In-Between Place

11:58pm last night...on the heels of the news of another child lost, at the age of 13, to Type 1 Diabetes...

I hear it.  Is it part of my dream?  As I lay there in some sort of state between wake and sleep, I try to figure it out.  The sound.  What is it?  Then it stops.  My mind rests.  I slip back into sleep.

It starts again.  I hear it.  My body and mind struggle with the sound; having a difficult time placing it.

Some nights it seems that Joe's Dexcom can alarm for a good hour before I wake enough to identify it.  There are hours of my nights that are spent in that "middle" place...not awake...not sleeping...in a cloudy haze.  Too tired to wake.  Too awake to sleep.  If that makes any sense what-so-ever.

Finally, I placed the sound.  Shit.  It is Dexter.

"LOW" is on the screen.  The "Under 55 Low" alarm.

I kinda lay beside Joe, as I ready the glucometer...eyes half-focused...so tired...cannot really tell if he is breathing...he is not really moving...or responding to my touch as I handle his finger for lancing.  Good.  The blood comes quick after the poke.  A sign of life. 

The blood is wicked up the test strip.  The glucometer counts down 5~4~3~2~1.  A 105 graces the screen.

I shutdown Dexter.  His accuracy has been off with this sensor.

I leave my 3:00am alarm set.  The 105 bears watching.

A day-in-the-life of my nights watching over Joe. 

Not Even Close...

As my "network" of "D" friends expands, I am increasingly aware of type 1 deaths, diagnoses, and hospital admissions from low induced seizures and loss of consciousness. With each incident, I mutter sadly, quietly, and angrily, and pissed-offly in my head "yet one more reason why Insulin is not a CURE."

I pratically spit it, the statement.

I do.

Type 1 Diabetes is difficult, at best, to manage. It does not lend itself to being "controlled". It can kill. The medication used to treat type 1 Diabetes is insulin.

Insulin is a hormone.

Insulin can be deadly if too large of a dose is given. Insulin can cause seizures, coma, and even death. Insulin is the only treatment for type 1 diabetes. Without insulin, persons with type 1 diabetes die.

Diabetes affects EVERY organ system in a persons body. These people look totally "normal" from the outside, while this disease wreaks havoc on their vasculature and organs. Insulin is needed, not only as life support, but to temper the effects of high blood sugars on tissues, vessels, and organs.

Insulin is not a cure. It never will be.

It cannot be taken orally.

The acidity of the stomach destroys the proteins that "make-up" insulin and, consequently, render it useless. Insulin must be injected with a needle. It is give subcutaneously several times daily. It is give with food. It is given with high blood sugars. It is given as "basal", a maintenance dose so-to-speak. This, my friends, is no CURE.

Insulin must be administered to keep persons with type 1 diabetes alive. Without it, they would die. Prior to 1921, the year exogenous insulin was produced/discovered, a person with type 1 diabetes would die a death of "starvation," as their cells would be unable to utilize glucose as an energy source. The death was described as painful and agonizing and miserable between the unquenched thirst, the continual flow of urine, and the insatiable hunger ... to no end... well, there would be an end ... The End. "Life Support", it is. Again, A CURE, it is not.

Dosing is not simple. It is complicated.

It is not a medication where you can just "dose it" and "forget it". You administer it, you check on the effectiveness of that dose a couple of hours later by checking a blood sugar level. Needle after needle after needle is the life of a type 1 diabetic... around the clock ... hour to hour. Insulin is not a CURE.

The balance required in dosing insulin is tenuous.

If you give too much it can induce a low blood sugar reaction called "hypoglycemia" or an "insulin reaction". A low blood sugar is an immediate emergency and must be dealt with promptly. It can occur at any time. A low blood sugar can lead to seizures, coma, and/or death.

AND...

If you don't receive enough insulin over the course of several hours you can end up in Diabetic Ketoacidosis; this is a life threatening condition that requires medical attention immediately.

AND...

Finally there are the reasons we all do that we do. The reasons, and the list is long, as to why we attempt to keep "tight" control of blood sugars... the long term effects of diabetes... the "complications". High blood sugar levels affect blood vessels, organs, and nerves throughout the body. Retinopathy, neuropathy, nephropathy, and all the fucking "opathies" along with cardiac disease, peripheral vascular disease, and dislipidemias...and on and on ... are but a few of the consequences of diabetes. A CURE? Definitely not. Period.

Too much Insulin.... you fall victim to a low. Too little ... you are stuck chasing down a high. Not a CURE.

Activity, monthly cycles, stress levels, environmental temperatures, illnesses, and growth spurts must all be accounted for when administering insulin. Blood sugars are affected by all of these factors and by oh, oh ... so much more. Insulin is far from a CURE.

Insulin is not a CURE.

A CURE it is not.

A day-in-the-life of gratitude for Insulin .... yet hoping for a less laborious treatment regimen for type 1 diabetes. A CURE, this is not.

The Hidden Truth

And,

Once again we are left with the raw, unsettling reality.

Sadness doesn't begin to describe ...

A heavy heart doesn't "cut it"...

A deep sigh isn't enough to even budge the weight...

Type 1 Diabetes took another young life last night. It could be any of us really. Any of us could be this grieving family today. This could be our reality. It is scary. It is sad. It is unthinkable.

I know I usually try to keep it "light" on BETA BUDDIES. I try to add a little comedy to our days and our sleepless nights. I know that I may offend some. Please understand that I am trying to make managing diabetes a little more bearable for us all. Because, no matter how much I "sugar coat" it, no matter how many "for fuck-sakes" are typed to be "muttered with exhalation", and no matter how simple I make it sound or how upbeat I try to be... this is the painful truth.

Type 1 diabetes is difficult, at best, to manage. It is not a beast to be "controlled". It can kill. The medication used to treat type 1 Diabetes is insulin. Insulin is a hormone. Insulin is deadly if too large of a dose is given. Insulin can cause seizures, coma, and even death. Insulin is the only treatment for type 1 diabetes. Without insulin, persons with type 1 diabetes would die.

Diabetes affects EVERY organ system in a persons body. These people look totally "normal" from the outside, while this disease wreaks havoc on their vasculature and organs.

Hallie posted the other day on the "invisibilities" of type 1 diabetes.

The "invisibilities" of this disease are like a double-edged sword. On the one hand, I am thankful for Joe's "normal-ness" in his appearance. His ability to run, jump, skate, bike, scooter, gallop, skip, and careen astounds us all. I am thankful for it; truly I am. On the other hand, what is difficult; what sucks; what is painful is that the very thing I am grateful for is the very thing that detracts on why a cure is so desperately needed. It takes away from all that is done "behind the scenes", hourly, to ensure Joe's safety and wellbeing. The hidden sequella of it all can lull you into a false sense of comfort. It can lull the public into the inaccurate perception that we "have it under control".

We don't.

The news of the death of this child could be about The Mahers...about Joe. It could be about any person with type 1 diabetes and their family. That is the cold hard truth. That will remain the cold hard truth until a cure is found.

Diabetes is deadly. Diabetes kills. Diabetes increases morbidity and mortality.

A day-in-the-life of mourning one of our own.

Links:

The Painful Truth of My Nights

Tomorrow Isn't Always There

Children With Diabetes: Dead In Bed Syndrome

THE PAINFUL TRUTH Of My Nights

NaBloPoMo: Day 2
I think it was Meri's post at Our Diabetic Life that lead me to this post. This is the stuff that I don't usually share with anyone, not even my husband. I don't let it seep too far into my perky consciousness during the day. But at night, when my positive-energy falters, when my "perky"-self slumbers, when my annoyingly, at times, "glasses colored rose" are darkened by the sun-less sky... my mind goes to places that I don't usually allow it to go when my defenses are up.

Thoughts that fleet through my brain when approaching my sleeping son during the night:

• "Oh thank god...his chest is rising and falling with inhalation and exhalation"
• "Good... he just twitched his nose a bit"
• "Phew... he moved his leg"
• "Dear lord ... why isn't he moving...oh good he feels warm"
• "Please, please, please ... don't let this be the beginning of the nightmare I have feared"

Thoughts that flood my mind if I wake in the early...the pre-dawn part of the day, BUT I wasn't planning on checking my son's blood sugar:

• "I'll never forgive myself if I don't get up and check his blood sugar and something is wrong. Never!"
• "What if .... What if ... What if ...!"
• "Get up! I don't care how tired you are...YOU must check on Joe!"
• "Drag your butt out of bed and check on your son... You have to!!!"

These are the thoughts that enter my mind almost nightly. It isn't that I live in fear 24/7. I feel I have a good and "healthy" grasp on type 1 in our lives; but I know the price. I know the price that "D" can demand of us to pay. The price that is too high to pay. It is a RARE price. A rare price that I refuse to pay with my beautiful son as the currency.

Nighttime hypoglycemia (low blood sugar) is a type 1 parent's worst fear. The body produces two hormones, Epinephrine and Glucagon, to combat low blood sugars. At night, Glucagon production usually declines. In addition, people with type 1 diabetes have impaired Glucagon production, which becomes even more depressed with each low blood sugar endured. Other contributors to nighttime lows is the prolonged period between meals and the body is more sensitive to insulin (unless Growth Hormone is involved). It has not been "proven" to be the cause of what we all think of every night as we kiss our dear children and tuck them in for the night. But I know AND you know we are all thinking about "Dead in Bed Syndrome". The children with DIABETES website defines it 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. " It has been thought to be due to a cardiac dysrhythmia perhaps in response to a low. Who knows? Who cares? Although I know it is an extremely rare syndrome, it scares the shit out of me. "It"..."D"...and "it's" treatment..."it's" management threatens my son's wellbeing, my son's life...daily....and nightly.

The reality of my nights living a day-in-the-life parenting Joe.

10/21/2010 A well written article about Dead in Bed Syndrome