Thursday, June 20, 2013

There is a Reason....

Why Type 1 Parents are exhausted. The short answer is because we don't sleep. Because we're getting up every few hours to check their blood sugars.

The fact that T1Ps (type 1 parents) do this is sometimes a hot topic for debate.  Those "in the know," other T1Ps usually, understand completely. (And my most awesome friends.) Then there are others, usually those who know little to nothing about Type 1 diabetes, will assume things like "helicopter parents" or "over-reacting." Or "once you get their blood sugar under control..." As if that is a possibility. The disease is too unpredictable and there are too many variables that effect it. We shoot for in range and hope for the best.

Your pancreas is naturally programmed to keep your blood sugar where it needs to be. That is not the case with a type 1 diabetic. The pancreas doesn't make the cells necessary to produce the insulin that  gets the sugar to the cells where it's needed for energy. So we inject the insulin ourselves, whether by syringe or a pump.

Now your perfectly created pancreas knows precisely how much insulin your body needs for the amount of food you consumed. Awesome. But not true for the diabetic.  Unfortunately for the diabetic the amount of insulin given is decided by a human. A perfectly, flawed human.  We are given guide lines by (perfectly, flawed) medical professionals for how to figure out this stuff out. But it's still just a SWAG (scientific wild a$$ guess).  What works one day, might not the next. I've done the same thing over and over and often gotten totally different results. How my older daughter reacts to a treatment is often the exact opposite of how my younger daughter reacts. I'll get totally different outcomes for doing the exact,same thing on a different day.

The guidelines change ALL THE TIME. I can't even begin to count how many times we've changed our daughters' insulin to carb ratio or the amount of basal insulin they get. Tons. The weather can effect it. Stress. Physical activity. Type of food. Lack of sleep. Hormones. Puberty. Growth spurt. Illness. Pretty much anything.

We have to take all of this into consideration when we decide how much insulin to give our daughters. That is a huge amount of pressure. Every decision we make has a huge impact on their health. Too little and they run high. They feel horrible and run the risk of having high ketones which, over time, can lead to DKA and major long term health issues. Too much and you have a more immediate scare. Plummeting blood sugars.  The latter is the fear that keeps T1Ps up at night. This mom's experience is every T1Ps worst nightmare. (And thank heavens they had a continuous glucose monitor to catch that.)

I am not a doctor, nor do I play one on TV, so it is very overwhelming to be a full time pancreas for two children. My husband and I are not perfect. We make mistakes. Like the time Kayleigh got 2 doses, one from each of us, of her night time lantus. We realized it right after it happened but there was nothing we could do about it other than check her more frequently. Had it been fast acting insulin, we'd just have given her a snack but since lantus acts differently so we had to wait it out. She bottomed out about 16 hours later, with a blood sugar reading of 41. (Her target is 150.) While in the car.

Last night we had another "human error scare" with Mackenzie. She was a little on the low side at bed. Not really low but not where we like her for sleeping purposes. Because diabetes does NOT sleep. It seems to play the nastiest at night.  So we gave her an uncovered snack and asked her to reduce her basal insulin (long acting) by  10% for 4 hours. (One of the perks of pumping. You cannot do that on shots while using lantus. Once it's injected, there is no changing your mind.)

We checked her again about an hour and a half later, expecting to see her closer to her target of 120. She was lower than when she went to bed.  We got her another another snack and checked her pump. Instead of reducing her basal by 10%, she had increased it. We were twigging. What if we hadn't checked her again? She had 2.5 hours left of the adjustment left. What would we have found if we hadn't checked again until 2 am?

And get this? After a snack, reducing her basal for real, and a great number at 2 am, she was still on the low side when she woke up this morning. That's diabetes. It doesn't follow a pattern, it doesn't sleep, it doesn't care about the "rules" of carbs to insulin.

And that my friends, is why T1Ps get up all night long. Because we don't know if D is going to play nice. Or if we might have made an error, like last night when we didn't double check that Mackenzie hit the right button. The only way to know is to check. Even if it means giving up REM sleep.



Cristi said...

I love your stupid pancreas picture. Right now, I'm not sure if I'm more upset about my stupid pancreas or about the crazy reading my continuous glucose monitor is giving me right now.

Your girls are lucky to have you watching over them so closely! You are doing a fabulous mom. I wish I could send some coffee to make the sleepless nights a bit easier to bear in the mornings.

The Zookeeper said...

Bless her heart, I've been praying for your family because I understand so much time and energy goes into the care of your girls. My son has a disease that is easily managed. Thanks for helping me understand a little more about D.

Michele said...

You are an amazing mom with amazing girls! Praying for you and my other Type 1 momma friends tonight!

Anonymous said...

I have a friend whose daughter was diagnosed several years ago and she finally got a pump last year. I can't imagine what you and my friend go through, even as a type 1, neither is comparable. I hate the stereotypes though that it's because we eat too much candy, I hear it and my friend has had to deal with that too. God bless you.

Jennifer aGlimpseOfOurLife said...

You sound like you have been working with this for years, though I know your girls' diagnoses were fairly recent.

Mary said...

I am in awe of everything you need to know and all that you remember.

Love the "stupid pancreas" pic.

Kym Thorpe said...

Just... ummm.... (((((hugs))))) and prayers. You are perfectly awesome and I'm sure you'll get extra stars in your crown and comfy pillows on the bed in your mansion in heaven someday. ;-)

The stupid pancreas picture cracked me up once I looked at it and realized it was a pancreas. LOL

Lisa said...

Wow. Praying for you and your family!

Dana Lambert said...

Your children are lucky to have you. I completely understand the up and down all night and day. I have two daughters with Epilepsy, myself. It's up and down for us, checking for seizure activity constantly. Praying for you and your beautiful children.


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