People continue to remind me all the time just how misunderstood type 1 diabetes really is. Someone recently asked me if Lily took a pill for her diabetes. (Insert palm to forehead emoji.) And another insinuated that since Lily wears a pump, we basically are on cruise control. Far from it, friends. I don’t mind that people don’t know, because how would they? But I do want to educate people and create awareness. So I had the idea to record all of the things I did related to diabetes in a 24 hour window. Read to the end to find out why I only made it 12 hours. Keep in mind, no two days are the same. This day was a particularly roller-coaster kind of day.
2:00 am – Wake to the Dexcom low alarm, which alarms me when her blood sugar goes below 80. She’s at 78 with a straight level arrow, which means it’s not dropping quickly. I get up and go into her room, fish around for her pump pouch, and turn off her basal rate of insulin for an hour. I hope that’s enough to keep her blood sugar from dropping anymore.
2:30 am – Wake up to the urgent low alarm (which goes off at 55 and below). I shoot up out of bed in a panic and go test her manually (a finger prick, which she always sleeps through now). She was actually at 77, which isn’t a bad low, but I still want to bump her up a little since the basal shut off doesn’t seem to be doing much. I go get a 15-carb juice box. I put the straw up to her mouth and she drinks half a juice box while sleeping – an amazing skill that many T1D children develop. 7-8 carbs should bump her up perfectly, I think.
3:00 am– Urgent low goes off again. I test her again and shes at 77. I shut her basal off for another hour and give her the rest of the juice box.
4:00 am – The high alarm goes off at 180. That last juice was too much and she has a rebound high. I give a small correction dose of insulin and finally pass out.
6:50 am – I wake up to Lily in my bed staring at me. I look at the Dexcom right away and it says 250 – I slept through more highs. I feel super guilty. I’m exhausted but I have a lot of work immediately ahead of me. First, I give a correction bolus to bring down the high, then I get Lily dressed and go get the baby who’s awake in his crib playing (for who knows how long now).
7:15 am – I do a finger prick test to make sure the Dexcom is reading accurately. It’s 20 points off, I calibrate it so that it will hopefully be more accurate moving forward.
7:45 am – Breakfast time. Her blood sugar has begun to drop a bit, which is good because she’s about to eat. The Dexcom is reading 170 with a straight down arrow, but this is still much higher than I’d like her to be before eating. She has a piece of toast with cream cheese and half of a peach. I bolus for 20 carbs, which is 1.75 units of insulin for us.
8:30 am – That wasn’t enough insulin, her blood sugar is rising quickly. I turn her basal rate up 50 percent for an hour (a shot in the dark).
11:00 am – She’s hungry again. She wants one of the spinach banana muffins we made yesterday. I bolus for 16 carbs, which is what the recipe online said they were.
11:30 am – Minor blood sugar crash at park. She’s at 75 with a straight down arrow. I turn off her basal insulin and give her a baby food pouch, which she loves right now. I wonder if maybe the muffins were less than 16 carbs, or if her playing at the park was too much activity. Who knows why the low blood sugar happened for sure.
11:45 – That low treatment was overkill apparently, her blood sugar is rising too quickly. I give her a micro correction dose of insulin. All the while, life is going on as normal for these two….
12:00 pm – I realize there’s only 3 units of insulin left in her pump (which is basically nothing), so I need to refill the cartridge in her pump and also need to change her pump site (where the needle is in her body). But it’s lunch time and both kids are getting hangry. Should I change it now or wait until after lunch? I decide to wait. Three units should get us through lunch time.
12:30 pm – Lunch. I made Banza pasta – made from chickpeas which won’t spike her like regular pasta would – with ghee, peas, and Parmesan. On the side she has sliced cucumber, half of a sliced apple. I bolus for 20 carbs.
12:45 pm – She ate it all, whoo-hoo! Blood sugar is looking stable at 130-ish. Time to change her pump. I clean the table, wash my hands, and lay down a paper towel to work on top of. I lay out the new sterile equipment that I will use for this change. I fill a new cartridge with 60 units of insulin which will last her about three days. I take her pump off of her, rewind it, put the new cartridge in, load it, then prime it through the new tubing I’ve attached. Time for the hard part – sticking a steel needle cannula into her flesh that will stay in there for the next three days. Our ritual is that she lays on the floor (on her tummy this time) and gets to watch a video on my phone. I clean off the top of her butt cheek with an alcohol wipe and feel around for a good squishy place that doesn’t have too much scar tissue under the surface (she is building up little mounds of scar tissue from her pump sites). I peel off the adhesive backing and take the cap off of the needle.
I squeeze her flesh up which is her cue that the needle is about to go in. With her eyes still fixed to the screen she says, unfazed, “Be gentle, mama.”
I plunge the needle into her skin and secure the adhesive. I ask her if it was gentle and she says yes, my little warrior, tough as nails. I clip the pump up to the tubing that’s now attached to her and put her pump belt on. We’re done. Phew. This one wasn’t too bad. No tears. Mind you, I’ve had my 1-year-old toddling around this entire time, trying to get into my business, and then wandering off, hopefully not getting into trouble.
So, this is where I stopped recording activity for the day. I had intended to record for 24 hours, but by this point in the day I’m feeling a bit depressed and exhausted by it. Normally I do all of this stuff on auto-pilot, but there’s something about writing down every diabetes-related task that makes me feel so sad. I’m realizing how much every hour of our lives is affected by this disease and I just need a break. Back to auto-pilot. Maybe I’ll do another 12 hours a different day.