Picked up My Princess yesterday. An extremely long drive, crunched into the backseat of My Dad’s Honda Civic, wishing my child-bearing hips were just a little narrower so The Peach’s ginourmous car seat wouldn’t leave a semi-permanent furrow in my thigh. Does an 18-month old really need two cupholders? Really?
I’m less angry now. Still a little irritated and I find myself unconsciously withdrawing a bit from My Mom when I talk to her. But less angry. Because my girl? She had a good time. She made friends and played and ran and swam and apparently drew all over everything and everybody. Which was welcomed, I gather. I was told what a great artist she was and how she took care of the other girls in her cabin and how they were all so happy to have her and how much they hoped she’d come back.
And she learned some stuff too. As I have mentioned before, Princess Punk has an insulin pump. The way it works… Okay… I’m going to explain it the best and non-boringest way I can and I’ll use some pictures, because it’s kinda hard to explain what The Princess actually has to do 24 hours a day, 7 days a week, 365 days a year, untill they find a cure…
The pump-
The pump is a pager-sized (remember pagers? If not, you’re too damn young) electronic device that we program with insulin-to-carb ratios for boluses when she eats and then basal rates for continuous delivery 24/7. The goal is to keep her blood glucose (Bg) between 70 and 120. Princess Punk currently has 4 different carb ratios, since her body uses insulin differently throughout the day. For example, her ratio from 6am to 10:30am is 1 unit of insulin for every 6.8 grams of carbohydrates. So, say she has a bagel at 7am, she inputs 70g of carbs (seriously. One bagel is 70 grams) into her pump and the pump delivers 10.3u of insulin over the course of about 2 minutes. The pump also delivers a basal rate (which again, varies throughout the day) and delivers anywhere from 1.2 to 1.6 units of insulin per hour for a total of 37.25u in a 24 hour period.
Confused yet? It gets worse…
The meter- 
The meter is the thing that reads her blood glucose level. Bg breaks down to the number of milligrams of glucose (sugar) per deciliter of blood. Measured of course, in a teeny tiny drop. Princess Punk takes out her meter, inserts a test strip, pricks her finger to draw a drop of blood and touches the blood to the test strip which sucks it in and analyzes it. It takes about 10 seconds from the time she puts the strip into the meter. 
The meter then sends a signal to the pump telling it what her Bg is. If she’s not using one of her linked meters (she has three, one in her kit, a spare at home and a spare at school), she has to input the number manually. If the pump gets a number from the meter that is over that 120 threshold, it beeps at The Princess and says, “Hey asshole!, punch some buttons here so you don’t get sick!” Ok… it really just beeps. If she actually presses the button like she’s supposed to, it calculates how much insulin to bolus to bring it back down. That’d be a correction. Her correction calculation is… ready? 1g of insulin for every 20mg/ml her Bg is over 120.
Thank god for the pump. Seriously. The first year or so after she was diagnosed, she used insulin pens. She had 1 shot of a long-acting insulin every night that lasted 24h. That’d be her basal on the pump. When she bolused for meals and corrections, she used a fast acting insulin in a pen. We had to calculate her bolus by hand which meant remembering her different carb ratios and correction calculations. She’d dial the pen to the correct number of units and give herself a shot (usually in the belly or arm). 
I kept a calculator in my purse. Not a fun thing for a 10-year old in a restaurant. She’d usually insist on going to the bathroom which always skeeved me out. I don’t know why, public restrooms are perfectly sterile places to give a kid a subcutaneous injection. Yuck. Not to mention, more than a few times, someone walked in to the bathroom, just in time to watch my pre-teen shooting up in the presence of an adult. Awkward. It was generally about 4 boluses a day plus the long-acting shot at bedtime. Which stung. Bleeding and bruises were not uncommon. She still has some faint dots on her stomach as residual reminders that hey, it could be worse…
So anyway… The pump. Much easier than shots.
The infusion set-
The infusion set is what connects the pump to The Princess. It consists of a reservoir, where the insulin goes, a long flexible tube, and a port with a cannula. 
Changing the infusion set…
- With an extremely bored expression on her face, Princess Punk suspends her pump. She presses a button which rewinds the little plunger that had slowly pushed the insulin into her body.
- She unsticks the port (it’s secured by a little sticker thingy) and pulls out the cannula.
- She itches at the old infusion site and looks irritated for a moment.
- She then attaches this little blue thing with an extremely scary looking needle to the reservoir and draws insulin out of the vial.
- She unscrews the plunger off the reservoir and snicks off the blue thing with the scary needle.
- She does something random with the blue thing with the scary needle. It’s supposed to go into a sharps container, but we find them randomly scattered throughout the house. Thank god The Peach hasn’t grabbed one yet (although I did pull a used test strip out of her mouth once. Gag.)
- She attaches the tubing to the reservoir and sticks the reservoir in the pump.
- She continues to look extremely bored.
- She presses a button on the pump to prime the tubing, watching the port until a drip of insulin comes out of the cannula. She is supposed to then check the tubing for air pockets.
- She doesn’t check the tubing for air pockets.
- She sticks the port into the spring-loaded insertion device. We refer to this particular piece of medical equipment as “The Blue Mushroom.”
- Bored expression turns into slight frown. “Charging” The Mushroom is sketchy. At this point, the cannula has a half-inch needle protruding from it. She has to peel the paper of the sticky part of the port and pull the knob on The Mushroom. The port needs to be secure on The Mushroom or it won’t insert correctly and she’ll have to pull it out and go back to step… ummm… Step 7. Getting the port secure, while avoiding the sticky and the needle is… Tricky. Much cursing has occurred at this step.
- Once The Mushroom is securely loaded up, The Princess then sets it against her skin, preferably in an area where there is a slight cushion of fat. Insulin is a chubby-chaser and likes fatty areas.
- She tenses visibly, for just a second.
- She presses the button on The Mushroom which shoots the half-inch needle and surrounding cannula into her flesh.
- She pulls away The Mushroom which leaves behind a blue plastic thing stinging out of the port.
- If she doesn’t have The Mushroom (“Ummm.. I think it’s at Mima’s?”), she hands the port to me an proffers her upper arm so I can stab the thing in. At which point she glares in my general direction and says, “Ow Mom.”
- She tenses again.
- She pulls out the blue plastic thing and in doing so, removes the half-inch needle, leaving just the cannula attached to the tubing.
- She looks bored again.
- She presses a button on her pump again, this time priming the cannula so the insulin is ready to go.
This whole process takes less than a minute. 
Ideally, she is supposed to do a set change every other day. She is supposed to rotate sites so she doesn’t develop scar tissue or get insulin build up. Since insulin is such a chubby-chaser, if one spot is used too much, it just kinda hangs out, whistling at the fat molecules in the area like it was in some cushy pick-up bar, and doesn’t actually get into her blood stream where it should be.
What she does is use the same 4″ square on each upper arm and change her site when the pump runs out of insulin.
Anyways, this entire, painfully long explanation was to say,
When we picked up The Princess, her port was on her hip. And the whole cabin did set changes together, every night. And they used not only a different site, but a different body part each time. Ok… That sounded kinda creepy. What I meant was, they cycled through all the potential infusion sites, stomach, arms, hips, ass (the top of it, not the part you sit on), sides and thighs.
Just that? That one thing? That made the whole thing an amazing and wonderful success.
Thank you Clara Barton Center for Diabetes Education.
Thank you Campership fund.
Thank you anonymous donor.
Thank you R&B who helped us with that last little bit.
And thank you Princess Punk, for being the amazing young woman you are and not letting The D-Monster fuck up your shit.
newlifeinvermont 