For anyone wondering what it takes to care for a child with Type 1 Diabetes on a daily basis, this is an unadulterated look at one day of our recent SC/FL Camping trip from mom's perspective.
Up around 8:00 to make breakfast. While I prepared the fixin’s for breakfast burritos, I wrangled T-Bear out of bed (he’s no morning person), and got him to test his BS (he hates the finger pricks more than the injections). He’d been running very high at breakfast time all week – between 200 and 270 most mornings – and was high again, though lower than previous days since he skipped his bedtime snack the previous night. I’d left a message on the Pediatric Endocrinologist’s Blood Sugar Hotline the day before on the way to our new campsite, but my phone had no reception at the campground. I couldn’t check my messages to see if they called with an adjustment, so I just had to wing it till Monday when I could talk to them.
Correction for a BS of 178: (178 – 100)/40 = 2 units
Bolus for breakfast:
1 large flour tortilla = 35 g
1 serving refried beans = 16 g
Fried potatoes – declined = 0 g
Shredded cheese = 0 g
1 cup milk = 12 g
Total 63 g of carbs at 1:10 insulin/carb ratio = 6 units
Total insulin dose = 8 units
I’ve pretty much perfected working up an insulin dose at camp. I write down all the carb counts per serving in my notebook as I’m cooking. After T-Bear has tested and given me his number, he serves up his plate and I count his carbs based on what he’s served and the numbers I’ve already collected. The stove in Popper so far has always stayed closed, so that’s our diabetes counter. There’s just enough space to lay out the Cami Pack, Poucho (which holds the two open insulin vials, in their Securitee Blankets), our sharps container (a recycled fabric softener bottle), and my notebook and log sheet laid open. I need a better calculator, though. My original calculator is just too big for the Cami Pack, and the little one I replaced it with has a faulty screen, so I can’t always see the numbers clearly. But, I set up the dose and T-Bear comes inside to take his injection before he eats. Smooth.
A couple of weeks ago, I bought T-Bear a watch just like mine, and he’s learning to use it to support his BS management. To get an “accurate” BS reading, we have to wait at least two hours after he eats before testing (I say "accurate" because glucose meters aren't entirely accurate). After he finishes eating his breakfast, we both set the timers on our watches for 2 hours; when the timers go off, we know it’s okay for him to test his BS again, and it’s about time to start thinking about eating within the next hour or so before his BS drops.
After cleanup, Papa Bear took the boys to the beach for a little bit while I tidied up. I filled T-Bear’s new hydration pack with water (dehydration can really mess with BS), made sure he had his SPI Belt on, and off they went. Since they’d only be gone about 1 ½ hours, he shouldn’t have needed to eat again before they returned, but he’s got a glucose meter, lancet device, and glucose tablets in his SPI Belt just in case he starts feeling low. Swimming will do that to him, but they would mostly be “splashing” and playing, and the weather wasn’t too hot, so I didn’t foresee any difficulty.
Around 11:00 we headed to the backwater for some fishing with friends, who were bringing lunch. Really no way to plan for this particular meal, but I’ve gotten fairly good at guestimating carbs. I’ve been using one of our blue “diabetes backpacks” for keeping T-Bear’s supplies, as well as my “purse”, camera, reading material, water, etc. I took a quick inventory of the Cami Pack supplies, got more syringes and alcohol wipes from my back-up supplies, and managed to get the Cami Pack, Emergency Pack, Poucho, notebook, water, an emergency snack, and a book into the backpack (the camera I had to carry separately). I even managed to carry it from the truck to the fishing spot without collapsing like an over-burdened camel.
Our watches beeped about the time we arrived at the fishing spot, and our friends arrived a bit after that. The delicious giant deli sandwiches, unfortunately, didn’t have a nutritional label, so no carb count. I haven’t found any supermarket deli that bakes their own bread and includes a nutritional label on the package. I just have to guess based on the 44 g roll that our local deli serves. Testing was slightly problematic since T-Bear had about earlier grabbed two fists full of squishy mud, which had dried to a cakey consistency on his hands. We did our best to rub most of the dirt off of one finger onto his shirt, cleaned thoroughly with an alcohol wipe, and did our best.
No correction for “on target” BS of 134. (Target is 80-150).
Bolus for lunch:
Deli roll – guestimate of 50 g
Sliced cheese – 0 g
Deli meats – 0 g
Tomato & lettuce – removed – 0 g
Mayo – 0 g
Water – 0 g
Total 50 g of carbs at 1:10 insulin/carb ratio = 5 units
Total insulin dose = 5 units
Drawing insulin at the fishing spot was a bit more challenging. With experience doing drive-thrus under my belt, I managed to sit the Cami Pack open in my lap, balance the Poncho open and upright, fetch out a syringe and alcohol wipe, and get a dose drawn. The lovely wafting breeze did not help.
After lunch T-Bear discovered the potato chips and was dying to have some. A serving of 20 chips is about 15 g, and he doesn’t technically need to cover anything less than 10 g with insulin, so I let him have 3 whole chips. A little later, he was offered a grape flavored water drink, which had another 6 g, which we also did not cover. I figured with all of the running around in the sun and warm weather, he’d more likely go low than high, so a few extra carbs wouldn't hurt.
This fishing spot was definitely one of those places where shoes are absolutely required at all times. Before embarking on this camping trip, I took all three Cubs to REI to get camp shoes. Thinking ahead to summer camping, I needed a way of keeping T-Bear’s feet protected without completely overheating. For any diabetic, even small cuts or booboos on the feet can be very problematic, as high BS reduces circulation in the extremities, which can hamper healing and lead to sores that just won’t heal. That’s when you have to start worrying about amputation. Although T-Bear is not necessarily at risk for this type of complication right now, we still do regular foot checks and want him to get into the habit of checking and caring for his feet. So, I decided that Keens water shoes would do the trick; give adequate protection from booboos while still keeping his feet somewhat cooler. They worked well at the fishing spot where there were lots of sharp rocks, pokey grasses, and gooey mud. No booboos, and he was able to easily wash the gooey mud from his feet and shoes without removing the shoes. And they’re comfortable enough he’s willing to wear them most all the time.
A couple more hours of fishing and playing, our watches beeped, and I consulted with Papa Bear and our friends about a departure time. Pretty soon I’d need to feed T-Bear a snack, and wanted to know whether we were going to do that at the fishing spot or at camp. It was decided we would pack up, head to camp, and have snack/dinner there, which our friends also brought. T-Bear started getting squirrelly as we were packing, so I did some soothing and hugging and firm talking to calm him down and bit, and had him test. Sure enough, he was low (64), so I gave him a serving of potato chips (15 g) to correct and hold him over until we got back to camp.
Back at camp, after ordering all three Cubs to the showers for a good rinsing off (clothes, camp shoes and all), we set out dinner and started roasting wieners and brats. It took reading Think Like A Pancreas for me to figure out that I can use the same correction formula to adjust for highs and lows. Previously, I’d been rounding down or guestimating a dose adjustment when he was low. Now the correction looks like this:
Correction for a BS of 64: (64 – 100)/40 = -1 unit
Bolus for “snack”:
1 serving potato chips (to cover low) = 15 g
2 hot dogs (no buns) = 0 g
1 serving potato chips (with meal) = 15 g
Crystal Light = 0 g
Total 30 g of carbs at 1:10 insulin/carb ratio = 3 units
Total insulin dose = 2 units
Yeah, I know, not exactly the healthiest meal. Because of the timing, I logged this dinner as “afternoon snack.” I also chose not to give T-Bear a dose, deciding that he would probably be running a bit low after a day of playing in the sun. Often his BS will drop 2 – 4 hours after intense or hours-long activity, and I didn’t want him to have another low before “dinner”.
More play back at camp, and a few hours later T-Bear had “dinner” – Honey Nut Cheereos with milk.
No correction needed for a BS of 121 (yay me!)
Bolus for dinner:
Honey Nut Cheereos = 22 g for ¾ cup serving; 2 ½ cups = 3 servings = 66 g
1 cup milk = 12 g
Total 78 g of carbs at 1:15 insulin/carb ratio = 5 units
Total insulin dose = 5 units
At the same time we were preparing “dinner”, our alarms went off. 7:00 is time for Lantus (long-acting 24-hour insulin). Because he’d been running so high at breakfast time all week, I increased his Lantus by ½ unit, from 9.5 to 10. So, two shots within 15 minutes (we can’t combine his two insulins in the same syringe).
More playing, a few card games, and time for bedtime snack. Again because of his morning highs, I changed his bedtime insulin/carb ratio from 1:30 to 1:25, hoping that would drop his morning number a bit. Since I had no way of reaching the Ped Endo, I just relied on my 11 whole months of experience managing T-Bear’s BS to guide me.
Correction for a BS of 274: (274 – 100)/80 = 2 units (the bedtime correction is ½ of the daytime correction)
Bolus for snack:
1 serving marshmallows (4 pieces) = 24 g
1 cup milk = 12 g
Total 36 g of carbs at 1:25 insulin/carb ratio = 1.5 units
Total insulin dose = 3.5 units
He was very high at bedtime (which we corrected for), and the sugar shock from the marshmallows, I’m sure, caused him to spike even higher before the insulin kicked in. He was having a minor meltdown, was feeling sick, and was too upset for me to get him to pee on a KetoStick (which we’re supposed to do whenever he’s over 300, or complains of a stomach ache). Despite my worry and anxiety about his high, I just laid down with him and helped soothe him to sleep. He was out within minutes of climbing into his sleeping bed, and slept all night. I, however, did not, waking at around 2:00 am feeling anxious and overwhelmed about our planned 30-day cross-country camping trip in July. How, oh how, am I going to manage that? For the first time since T-Bear’s diagnosis last May, I had doubts whether or not I can keep him healthy, particularly if my communication with the Ped Endo is spotty while on the road.
If you have read all the way to the end of this posting, then bless you. Either you really want to know what it’s like to live with and care for a child who lives with Type 1 Diabetes, or you’re one of my blessedly tolerant friends for family members. (If you happen to be an old hat at T1, please feel free to drop my a line or leave a comment with suggestions for improvements I can make to T-Bear’s care). And if you know me, you know that I will handle our planned trip in the same way I’ve handle everything else. With lots of planning and thinking about it ahead of time, and with a big dose of confidence (even if I don’t necessary feel confident at times). I’m going to screw up a lot, and I’m going to learn a lot. But if Papa Bear and I manage to pull this trip off even moderately well, T-Bear is going to have one more experience under his belt proving that he can do anything he wants to, diabetes be damned. And that will be a gift of a lifetime from us, his concerned parents, to our beloved, beautiful son.
Now, back to blogging the good parts…