A Time Diabetes Bossed Us

Henry’s recent love of Angry Birds Star Wars on his iPod and the curvy roads back East let us know that he gets car sick. About 40 minutes into our 571 mile trip back from the beach, (which should take about 9 hours) he began to feel sick.

Car traveling jacks up Henry’s blood sugar, so to compensate, we increase his basal temporarily to deliver 80% above his normal basal rate, which usually keeps his blood sugar between 80 and 150. However, one look at his continuous glucose monitor (CGM) told me his BG was falling. I tested his blood for the glucose level and ketones. His blood sugar was 62 and he had moderate ketones. We’d entered the terrible T1D paradox of nausea. Insulin and fluids are what flush ketones out of the system, but with a low BG and a sick tummy, it’s difficult, if not impossible, to take in or keep down carbs so that insulin can be delivered.

I climbed to the back seat and canceled the temporary basal increase. I coaxed Henry to eat or drink any carb he wanted, but apple juice and Airheads made him gag. We pulled into a gas station, and after some really dramatic moments, he managed to swallow a Dramamine with some apple juice. We walked around, and I panicked purchased a number of candies that came in a gel form, a sleep pillow, and a roll of paper towels.

Within half an hour we were back on the road, two arrows up on the CGM, Henry drinking sugar free liquids, insulin delivered, and ketones gone. It took a while before he felt like eating, but when he did, we stopped at a place Henry named. When it came time to place his order, big tears welled up in his eyes, and he said he didn’t want to eat there. Normally, Henry loves mealtime, so this behavior threw us. Finally, he decided on a bowl of rice, black beans, chicken, and cheese, and we bolused for half of it.

Henry ate half, and saved the rest for later. Later arrived, and we bolused for the rest as Henry grazed in the late afternoon. I  watched his blood glucose rise to 200, then 265, then 310, then 381, then HIGH (on a CGM this means it’s above 400). All the while, I rage bolused more insuiln, .5, then .75, then 1.5. I poured on the fluids. With a high blood glucose and lots of fluid, we got to visit no less than 7 gas stations (and a bucolic roadside) before dinner, which we were holding off on until his blood glucose was below 300, so the kids had an 8 p.m. dinner.

Recently, we were at the Friends for Life Conference in Orlando, FL, where the closing keynote speaker challenged the audience to think of how diabetes had enriched our lives. When presented with this question, my first thoughts were sardonic. It’s easy to think of all the negative ways that diabetes has altered my life, and most significantly and importantly, my son’s life. However, the easy type of thinking is not very useful. Diabetes is difficult, and demands a complicated response. The way I see my son is beautifully difficult. I see a five-year-old with a generous spirit, a kid who has endured more medical procedures than me, even though I’ve been alive seven times longer than he has. I imagine the courageous person he is already becoming because he has to live with type 1. Diabetes has allowed me see me son, and yes, I mean, “I see you,” in James Cameron Avatar kind of way: a great empathy that is a heart always breaking open to need and contentment.

Super T1D in blue with blue d-bag. #bluefridays #projectbluenovember

A post shared by Semisweet (@semisweett1d) on

 

A few more gas station stops later, we were finally at our destination eleven and half hours after we started the trip. We’d blown right past bedtime, and when I tucked Henry in he said, “I don’t like diabetes.”

I said, “I don’t like it either. Why don’t you like it?”

“I don’t like diabetes because I have to wait to eat yummy candy like Airheads, and they taste delicious. It’s not fair”

Henry’s starting to realize that his diabetes makes him different. The times when he tells me that he doesn’t like diabetes are hard, and I know it’s imperative for me to be really present in these moments, but my thoughts spill out like paint splatter. Immediately, I think it was a poor decision to introduce candy as a treat for lows. I wonder how we could have been so shortsighted. I think about watching family members who are able to give their kids lemonade, crackers, juice, and candy without a second thought. I’m with Henry, it’s not fair.

“You know what, Henry,” I said. “It’s not fair, but because you have diabetes, that means we take really good care of you, and you’re going to be healthy when you grow up.”

I think about telling him that candy is like medicine for him, but think better of it. I want to keep as much of his childhood diabetes free as I can. I want candy to be just candy.

 

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A Time We Bossed Diabetes

We travel a lot over the summer, and while staying with family this summer our kids saw real live commercials for the first time. And they wanted Airheads, Fruit Loops, Num Noms, and Mr. Clean Magic Erasers.

Thanks to a talk, “Hypoglycemia Prevention and Treatment” given by Gary Scheiner at Friends for Life 2016 we learned about candies that have dextrose, which are a quick rescue for lows, and Airheads just happen to be on the list. We jumped at the chance to hand over candy without consequence instead of chalky glucose tabs to treat our son’s low blood sugars.

It’s true that people with type 1 diabetes can eat anything they want to, and we don’t make foods off limits in our house. Instead we practice a little bit of all things. However, bolusing for extemporaneous juice or candy is an exercise in certain failure. Often, the carb will peak before the insulin starts to act, and the sugar burns off while the insulin is still acting, so there’s a high high, then a low.

Due to summer activity, we’ve often had to dial back basal and bolus settings. We know certain activities like the beach, swimming, or playing outside when it’s hot are likely to drive Henry’s blood sugar low. In fact, for Henry, lows can come 12 hours after activity.

With a summer of beach trips ahead, I rigged up a pretty neat way to keep Henry’s insulin and pump in good working order, and my husband bought lots of Airheads. In fact, he bought every flavor of Airhead, and even doubled up on the White Mystery flavor.

When Matt showed Henry all the Airheads ready to treat his lows, Henry said, “Give me some insulin so I can go low and try one.”

Sure enough, our second day at the beach caused a low of 62, which he felt, and uncharacteristically needed a little time from which to recover.

 

With each low, he bounced back, declaring what flavor of Airhead he’d try next. So far,  we’ve visited Edisto Beach, SC, and St. Augustine Beach, FL, and tried an orange, cherry, and blue raspberry Airhead. Lots of summer and sugar stretches joyously ahead.

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Orange Airhead, Cool Hat, St. Augustine Beach, July 2016

Insulin Pump Meets Atlantic Ocean

Diabetes is often considered an invisible illness. For the first months after our son’s diagnosis, a stranger could look at our kid and not know he was living with a lifelong chronic disease. He was on multiple daily injections (MDI) and didn’t yet wear a continuous glucose monitor (CGM), so no medical devices identified as someone with a disease or disability. However, three months after his diagnosis, he started wearing an Animas insulin pump and Dexcom CGM.

In fact, unless someone knew what to look for (tubing coming from a pump, adhesive peaking below a shirtsleeve), Henry’s diabetes would be invisible to most. But when Henry swims, his diabetes becomes visible.

There are all sorts of pumps and a few CGM’s on the market, all with varying degrees of water resistance. I think the choice of insulin therapy and delivery is personal and specific to each person with diabetes. For us, the Animas pump was a good choice. It’s waterproof, and we devised a way for Henry to wear it while at the beach, so we don’t have to disconnect and manually deliver the basal a couple of times an hour. Henry’s free to play in the hot sun without us worrying about his insulin overheating or losing a pump site. However, to ensure that the site and pump are in good working order (even in salt water) we devised a pretty creative work around. It’s a bit like nesting dolls, but to us it was worth preserving the site and not interrupting Henry’s time at the beach.

  1. Henry wears a contact detach infusion set, and we cover it with a layer of Tegaderm HP, so the site itself is protected from sand, salt, and water.
  2.  The next step was to secure the pump. We placed it in a ziploc bag, with the tubing coming out at the very edge. Then we secured the opening with gaff tape.
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Opening secured with gaff tape (upper middle)

 

 

 

 

 

 

 

 

3. Next, we placed the pump in its ziploc bag in a FRIO insulin pump wallet, so that the insulin didn’t denature in the heat, and then placed the FRIO pump wallet in a SPIbelt. (I told you it’s like nesting dolls!)

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rocking the SPIbelt

4. Hang the d-bag from the sun shelter and enjoy a preserved site and pump.

Have Diabetes, Will Travel: A Summer in Review

5,249 miles

34 days

18 states

1 oil change

16 site changes

4 Dexcom changes

2 vials of insulin

2 Dexcom Receivers

When Henry was first diagnosed with type 1 diabetes, I was afraid to put him in the carseat and drive to the grocery store. What if he was unconscious from a low blood sugar, but I thought he was just asleep?  What if he needed rescue carbs and I couldn’t get them quickly enough?  How was I supposed to drive and watch for symptoms in the rear view mirror? In hindsight, those fears seem silly, but those fears are valid concerns. Slowly, we got back on the road and increased our travels.

Our families live over 850 miles away, so the first winter vacation after diagnosis, we faced the acid test of really traveling with diabetes. We learned a 10% increase in basal would not even touch a high blood sugar caused by sitting in the car for hours on end. We watched the effects of fast food on the Dexcom receiver, as it read HIGH for many hours while we threw insulin at a stubborn blood glucose of 400. We’ve created innovative rest stops, and the less said about this, the better. 

Traveling with children is never easy, and traveling with a child who has diabetes is even not easier. To begin with, there’s the sheer mountainous amount of additional luggage that holds supplies and back up diabetes supplies. You have to calculate for site changes or multiple daily injections (MDI’s) and plan for back-ups if those fail. Insulin should be kept cool, plan for meals on the road (not fast food), and then there’s the absurdly high blood sugars caused by sitting in the car for long periods of time.

Henry can’t do three things because he was diagnosed with diabetes: serve in the military, become a commercial pilot, or a commercial truck driver. I’m OK with this list, but he can do everything else. He can do everything else; it just requires extra planning. Taking grand, long summer vacations is a rehearsal for the other challenges he’ll face while living with diabetes.

We crank his basal up 60% and hit the road, because the effort and payoff is pretty sweet.

meeting Mickey and Minnie at Friends for Life 2015

meeting Mickey and Minnie at Friends for Life 2015

time on the family farm

time on the family farm in the southeast

walking in the Atlantic in Maine

walking in the Atlantic at Maine

Taking a Pancreas in Your Pocket to the Beach

In everyday normal life with diabetes we search for the meter-remote, a vial of test strips, new lancets, batteries, the Dexcom receiver, glucose tabs, juice, the Dexcom receiver, the phone/s to which the Dexcom Share data is downloaded. Repeat. Repeat. Repeat.

Despite being organized (the up-cycled D-Bag aside), I’ve managed to run over a Dexcom receiver in the preschool parking lot (the up-cycled D-Bag’s fault). In the frantic moments when I’m searching for a needed medical device while fixing lunch or getting ready to run an errand, I’m overwhelmed with the impossibility of replicating a human organ, which is, of course, impossible. However, thanks to technology, T1D is getting easier to manage. Pumps, continuous glucose monitors (CGMs), and hopefully closed loops systems will make management of T1D easier. We’ve certainly seen innovation since the first insulin pump in early 1970s.

model of first portable insulin pump, early 1970s

Our son is 4, so finding creative ways to carry his Animas pump, CGM receiver, and the iPod to which the data is downloaded is challenging. The challenge triples at the beach. Yesterday, the new Dexcom receiver took a *quick* dip in the kiddie pool. Now it’s spending some time in a bag of rice with an ocean view. If you’re not a member of the FB group Dexcom, consider joining this group as it offers great suggestions for using Dexcom, especially when it’s been swimming.

People with diabetes can do everything anyone else can; however, there’s more planning and worry involved. This is our first summer at the beach since diagnosis. We’re learning a lot about pumping in hot weather and conducing some experiments in regards to “waterproof” versus “water resistant.”

Our son has diabetes, but we’re lucky enough to be at the beach. We are at the beach. We are at the beach, but so is diabetes. We are at the beach.

diabetes at the beach in the foreground

diabetes at the beach in the foreground

diabetes at the beach with beach in background

diabetes at the beach with beach in background

Both are simultaneously true.