My daughter climbed into bed with me in the morning and we turned on PBS.
She asked if the next day was pump change day or if it was in two days. She followed with:
I don’t want to have diabetes.
My life was just fine when I had injections. I don’t want the pump!
What do you say to that? What can you say?
I can’t change that you have diabetes, but trust me, it’s better with the pump.
She sighed in exasperation and rolled over, tucking herself under the blanket to watch the characters on the screen as they spelled the words GROWN UP.
That was the end of that.
Ironically, the laptop was perched on my knees and I was reading Lee Ann’s post Another Round of the Blame Game on The Butter Compartment.
And that’s not supposed to get tiring? We’re supposed to be OK with it and just suck it up without complaining, being pissed, or wanting to quit? When we aren’t OK with it, and we get tired, angry, depressed, and unmotivated, we’re seen as weak, lazy, undedicated, irresponsible, and of poor character? That’s justified, how exactly?
Scott‘s comment to Lee Ann was particularly pertinent given the guessing-game-insulin-roulette we played over night.
If anyTHING is to blame, it is not the diabetes, but the overly complex treatment protocol. To succeed with intensive therapy, a patient with type 1 diabetes must take 3+ daily injections of insulin (or pump therapy), 4+ daily blood glucose tests, and follow dietary and activity instructions, all of which is subject to change without notice and without warning at any point in time.
That’s right, treatment protocol constantly changes and what has been working fine can suddenly stop working. And this is exactly what we experienced the night before and into the morning leading to my daughter’s proclamation that she doesn’t want to be diabetic.
Q is usually in range at bedtime with the exception of pump change days. Sometimes, but not always her blood sugar is elevated at bedtime on those days. Since these highs are erratic, we can’t give a preemptive extra bolus before the change and risk a low. We are working on this by being more aggressive if she’s even the slightest bit high at dinnertime.
But her recent bedtime number of 441 was completely out of the blue and unexpected.
We literally checked her four times with two different meters to make sure it was correct.
(Which brings up a frustrating issue that the same meter can vary by a good 20 to 30 points.)
We checked for alarms we made sure we actually bolused for dinner.
I had no idea why she was this high. She was feeling just fine.
So what’s the next step? Check for ketones.
If there’s one axiom I’ve learned it’s that:
You can lead a diabetic child to ketone strips, but you can’t make her pee.
Of course part of the bedtime routine includes going potty, something she had done while getting changed into PJ’s before her blood sugar check.
She tried going again, but just couldn’t. So what do you do? She didn’t seem sick. But sometimes her BG rises before she shows the first symptoms of illness.
I looked at our chart with the appropriate correction for a blood sugar level in the 400’s. Three units is a lot of insulin for her, especially at bedtime.
So we played insulin roulette: we guessed and gave her 2 units.
Now I am in no way advising this because after I gave her the bolus and a no carb snack and sent her to bed, I totally second-guessed myself! I was so afraid that she would go too low.
I asked my husband to check on her over night and said that if she wasn’t coming down in a couple of hours that we would need to wake her and change her pump and if she was going too low, we would need to wake her for a snack.
10:30 pm: 321
5:00 am: 136
By breakfast time, which was a little late because it was a lazy Saturday morning, she was 79.
Disaster averted. Back in range the rest of the day. No need for an early pump change.
(Update: We now use the blood ketone meter and test for ketones a lot more frequently than we ever did with the urine test strips.)
Back to Injections
Since that morning she has been insisting that she does not want the pump anymore. She says that injections are better; that she was so used to them that they didn’t hurt.
I try to give her good reasons, but she’s just not agreeable.
I say that it’s quicker; I remind her that she has more freedom at birthday parties. I say that even if she wanted to have injections that we don’t have the supplies any more.
She told me that injections are better for the planet and I tell her we use less stuff now. (Only evidenced by the fact that our sharps container fills less quickly, though the pump produces it’s own set of waste.)
She says that if we do injections then we wouldn’t have to “use all that pig stuff to make medicine.” (A while ago someone was talking about the local Kiss-A-Pig Gala and we explained that insulin used to be made from pigs.) I tell her that both ways use insulin and that they make it in a lab now.
I tell her that we are not going back.
*Please follow the protocol prescribed by your care team to treat high or low blood sugar.