Friday, June 22, 2012

A Necessary Repost - It is so much more...

When I say Justice was 59, 200, 43, 499, 29, 113, 143, 178, most people see a number. Unsure sometimes whether its good or bad, or thinking "that's high." or "that's low".

A number for us is so much more. I hate to say it defines us, but it defines the moment. At that moment when we see a number pop up on the screen after just 5 seconds, its as if we feel a shift on our entire universe, that lasts way longer.

That moment changes things. It changes the way we react to what may have been a normal situation, may have been a fun time, or peaceful slumber. It changes the now of course, as if that number is out of the desired "range", then we must act on it without hesitation.

But that moment also changes how we see our future, our children's futures. Its what keeps us diligent, its what worries us and wont allow us to sleep, its what makes us act so aggressively.

Its what has me up right now at 2:40 am.

We had a number earlier, that I have seen before. Shit, I have seen lower. But the paleness of his face, the shaking of hands, the moaning in his voice is what made me have to stop and catch my breath. He was 59, Dex alerted, we gave juice. But then he started whining, saying he felt itchy, and tingly, crying that he felt like he was dropping more and more. So I checked him again, even though those 15 minutes that seem like an eternity weren't up.....39. I rushed to the cabinet and grabbed pixie sticks (we find these work great for J) I emptied a few in his mouth and looked in those big brown innocent eyes and saw it.

I saw him as a teenager having a low and no one was around. I saw him sleeping and dropping, and me rushing to his failing body to save him before it was too late,I saw him collapsing on the field at a college game. I saw things no mother should see. And all I could fucking do was pour sugar in his mouth.

When I see a low, I feel fear. I never freeze. I always react with haste, but the after thoughts sometimes consume me.

Symptoms you may have when your blood sugar gets too low include:

  • Double vision or blurry vision

  • Fast or pounding heartbeat

  • General discomfort, uneasiness, or ill feeling (malaise)

  • Headache

  • Hunger

  • Irritability (possible aggression)

  • Nervousness

  • Shaking or trembling

  • Sleeping difficulty

  • Tingling or numbness of the skin

  • Tiredness or weakness

  • Unclear thinking

Sometimes your blood sugar may be too low, even if you do not have symptoms. If your blood sugar gets too low, you may:

  • Faint

  • Have a seizure

  • Go into a coma

Other symptoms that may occur with this disease:

Can you imagine seeing a number and seeing those things? Watching your child experience a handful and worrying about which others may occur? We can. We do. I am. I worry about him falling and hitting his head in gym, passing out on the way to lunch, we all worry about losing our kids in their sleep. Its beyond scary, it makes me question so much in my life. It make me angry, exhausted and so drained that I cant even just enjoy a moment anymore like I should.

And once that low is up, and things are steady...Diabetes decides to rear its ugly face again...cause you know IT NEVER sleeps.

Right now as I sit in bed, I am waiting for a correction to work. A dose of insulin to bring down, what I can only speculate is Justices liver kicking out glucose in a delayed reaction to that 39, which now has us at 350 at 2:30am.

Seeing those up arrows on his Dexcom, and knowing I cant just click a button and make it stop is terrifying. While there are less immediate risks with a high blood sugar, it makes us worry about our child's future. Will they have their eye sight? Their kidneys? Will they be able to conceive? Have nueropathy? Why do I have to sit in bed and wonder this about my 8 year old son! I should be enjoying him sleeping with me, and his snores, I should be laughing at how him and his brother fight all day but now are snuggled up beside me. But I cannot. I am crying. I am scared that these times will change something in the future, that they will not allow him to be all I know he can and should be!

A high blood sugar level itself is a symptom of diabetes. However, an individual experiencing hyperglycemia may have no symptoms at all.

Common symptoms can include:

  • Dry mouth 
  • Thirst
  • Frequent urination
  • Urination during the night
  • Blurry vision
  • Dry, itchy skin
  • Fatigue or drowsiness
  • Weight loss
  • Increased appetite

If hyperglycemia persists for several hours and leads to dehydration, other symptoms may develop, such as:

  • Difficulty breathing
  • Dizziness upon standing
  • Rapid weight loss
  • Increased drowsiness and confusion
  • Unconsciousness or coma

Left untreated, hyperglycemia can lead to a condition called ketoacidosis, also known as diabetic ketoacidosis (DKA) or diabetic coma. This occurs because the body has insufficient insulin to process glucose into fuel, so the body breaks down fats to use for energy. When the body breaks down fat, ketones are produced as by-products. Some ketonesrehydrated, and adequate insulin action is restored, ketones remain in the blood. Ketones in the blood cause nausea, headache, fatigue, or vomiting.

Ketoacidosis is life-threatening and demands immediate treatment.

Symptoms include:

  • Shortness of breath
  • Nausea and vomiting
  • Dry mouth
  • Breath that smells fruity
  • Stomach pain

Yea. That high number isn't JUST a number. Its not just give him some insulin and that's that. If only it was that simple. The complexities, variables and other components of this disease are mind boggling, and heart breaking.

While we must bite our lip, swallow those tears and administer insulin or sugar as if its "normal" and worry about the above things that can happen right NOW, we must also think of their futures..

The long term effects of low blood sugars haven't been documented yet but its said that nerves in the brain are damaged and brain cells die with each low. That statement alone is scary enough without further assessment. But its the right now of a low that keeps us up at night. The scariest of all being Dead In Bed Syndrome.

And high blood sugars.

Shit. That's all we hear. About amputations, blindness, and transplants. But did you ever wonder why? or how? Well they hammer into our heads LOWER A1C, high blood sugar= complications such as:

  • Cardiovascular disease
  • Nerve damage (neuropathy)
  • Kidney damage (nephropathy) or kidney failure
  • Damage to the blood vessels of the retina (diabetic retinopathy), potentially leading to blindness
  • Clouding of the normally clear lens of your eye (cataract)
  • Feet problems caused by damaged nerves or poor blood flow that can lead to serious infections
  • Bone and joint problems, such as osteoporosis
  • Skin problems, including bacterial infections, fungal infections and nonhealing wounds
  • Teeth and gum infections

So while making sure our children do not drop dangerously low, to ensure they are here to see another tomorrow, we must also keep them from going to high, and securing their future..NOW.

What they don't tell you is that these numbers aren't predictable. Not just food, exercise or insulin can cause a low or high. But stress, excitement, sickness, hormones, every single thing that you and I consider part of being a kid, or just human, can cause a chain reaction in blood sugars such as the ones I shared with you here.

Seems like alot to take in don't it? When I saw that 39 and 350 tonight, that's what I saw. All of the above.

This isn't just a single moment, but each moment. Each check, each reading, this is what we see. Everytime I look into those gorgeous eyes, or feel his hug, or hold his hand during another battling low or raging high....

You see a number, for us its so much more.


Kim Anderson said...

as I posted on your wall post... I'm w/ you. We are (try to be).... You are G, not Diabetes.... We got this, kick "D's" butt.... It hasn't claimed your life, LIVE GIRL, LIVE.... ETC....
BUT - it is crazy insane and viscous. It doesn't care that she is scared to go to sleep at night. It doesn't care that we don't sleep at night. It doesn't care that I have chronic pain on top of it. IT DOESN'T GIVE A DAMN ABOUT US.... IT TRIES TO TAKE US DOWN, MAKE US SUCCUMB TO IT... WE WILL NOT... BUT, IT SURE AIN'T EASY... I try to be positive as does she... I am w/ her. But, lately I've listened to her.... and it makes me sad knowing she "feels like an alien".... different, etc. (Went to a non-d camp for the first time! About to go get her :)) She made it... came home 1st day in DKA... ARGH... didn't want to go back, BUT, she had to tackle this and know in her heart she could do this.... so, I'm with you.... it all sucks! BUT... we have to tell the world what is really is.... not make it sound like "WE GOT THIS".... WE TRY, BUT WE DON'T.... argh....Thanks for sharing. I'm not a blogger.... but, I will share my notes in a "note".... Thank you for inspiring me to post what is really on my mind, it's not a bed of roses! Blessings and HUGS FROM TX.

Denise aka Mom of Bean said...

nope, never just a number and that totally fucking sucks!

Tracy1918 said...

You are so right on!

And you are such an amazing mom for take care of Justice and writing this post.

I met a new D-Mom today who doesn't know all this. I guess the doctors didn't want to scare her at her son's diagnosis, but she never checks at night.

I told her. I felt a little bad, but she needs to know.

It's never just a number.

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Reyna said...

I love how well you explain the numbers and how they determine our action in a snippet of time Lex.

His eyes are GORGEOUS btw.

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