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Posts tagged ‘Dex’

Taking Animus, Omnipod, and the Dex to Hawaii

The first time we went to Hawaii (and surfed with a tiger shark), Luke was using the Animus. Despite qualms about taking a $5k piece of medical equipment through sand and salt water, we decided to go for it. Animus has a great loaner program, so we got a backup pump before we left, along with a protective film for the display. Still a little hesitant, we tried disconnecting at the beach, so Luke wasn’t the only kid wearing a jet pack on his back. But even with reconnecting to give a basal + correction bolus every hour, blood sugar went high. Pulling him aside to reconnect so frequently was annoying as well, so we swallowed hard, tucked the pump into a pocket on his rash guard, and turned him loose. And you know – it was fine. We did extra checks for sand around the cartridge cap and sets, but we checked the tubing for bubbles every night anyhow.

WP_000296 Ah, the tubing. We were happy to be rid of it when we went to Kauai this year with Luke on the Omnipod. This would be much easier, we assumed. No tubing hanging out the back of Luke’s swimsuit, no bubbles, no sandy sets. We had form factor on our side.
But the pods’ adhesive seemed to dissolve on contact with salt water. Pods barely last half a day, and we were rapidly running through the extras. We tried a tip from other parents: put down a layer of waterproof Tagaderm, put the pod on top, and tape over with extra Tagaderm. No luck – pods still fell off. Under all the Tagaderm, we could see the pod detached and sliding around. I turned to the Facebook hive mind and got more suggestions: vet wrap or Bands for Life, Matisol, Mefix, Opsite, Nexcare waterproof or 3M micropore tape, and Extra Large Waterproof Band Aids.
With just a few days left, we decided to do our usual drill (SkinTac, pod, Tagaderm over the top), with one addition: we wiped SkinTac on top of the pod’s adhesive pad so it was thoroughly soaked and couldn’t take on water. We let it dry (one parent suggested letting each layer dry thoroughly), covered with Tagaderm, and that did the trick! We got a couple days out of each pod (just enough to get us home).

The darling Dex did much better. Its adhesive stayed put the entire week with a little extra Tagaderm, and the G4’s longer range let us leave it in the backpack (we used to carry the 7+ with us in a waterproof bag). We swagged insulin and treats between regular tests, and did ok except for the occasional shave ice or pineapple juice. (A friend coined the term “carbument” after seeing our intense discussion about how many carbs were in a massive puka dog bun. Vacation, people!)
Watch out for military interference, though. We took a catamaran tour along the jaw-dropping Na Pali coast, where we passed a military base that does next-gen Star Wars missile testing and apparently jams equipment that comes into range. Although the Dex was a few inches away from Luke, it lost contact as we passed by the base. A truck with flashing lights drove parallel to our boat – “If you’re taking pictures of them, they’re taking pictures of you!” the captain cheerily announced. DSC02790

If you go to Kauai, wild chickens will be shadowing your every step as well. The 1992 Hurricane Iniki let lose chickens and fighting cocks, and now they are the local answer to city pigeons. As we sat in a drive-through to order chicken McNuggets, we saw a mother hen bedded down with her chicks by the loudspeaker.
“See any irony in this?” Erik asked.
“Don’t let Luke in on the joke,” I said. “Chicken nuggets are way too easy on blood sugar.”

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An Experiment in Empathy

When the new Dexcom G4 arrived earlier this week, I was excited on two counts:

First, we could pick up Luke’s blood sugar from his room (no more clunky white baby monitor to pick up alarms), from the parents’ seats at Aikido practice, and from other rooms at friends’ houses.

Second, I could try on the old Dex and see how it felt.

This seemed a little unseemly, taking D-mama empathy a bit far, but I wanted to know if Luke’s occasional complaints about the Dex hurting him were genuine or pre-schooler exaggeration, and I wanted to know what normal blood sugar looked like. When Luke was diagnosed, I left the hospital with the impression that normal blood sugar stayed strictly between 80-100 at all times. I’d learned since that there’s more variation, but I had no idea how much.

What I found was both a relief and slightly dismaying. A relief, because much of the day our blood sugars weren’t dramatically different (it was a good day – don’t get the wrong idea). A shared banana first thing in the morning spiked us both – but my pancreas kicked in to  level out blood sugar, while Luke’s synthetic insulin took a while longer to flatten out the rise. (The old Dex showing my blood sugar is on the left, and the new G4 showing Luke’s is on the right. Apparently I experienced the “dawn phenomenon” spike just before waking up – Luke’s still too young for that.)

There were moments when Luke’s blood sugar went higher or lower than I could follow – and what can you do but sigh and bolus or hand over the juice. What surprised me was how uncomfortably aware I still am, several days in, of the Dex wire under the back of my arm. It twinges when I roll over on it at night, and it’s faintly sore during the day. Maybe it’s a bad spot or I’m just not hardened yet to pokes and discomfort, but my heart sank when Luke complained this afternoon that the new Dex (which has a smaller wire) hurt his arm.

But the moment passed, and it keeps him safer at night and during the day, so we’ll stick with it. He needs something to tell stories about when he’s older – some equivalent of the old days of boiling glass syringes and sharpening needles on a whetstone. Maybe he’ll have a CGM by then that reads blood glucose via light through the skin, or maybe by then we’ll have something even closer to a cure.

Surfing with Tiger Sharks and T1D

I’ve always wanted to surf and recently got the chance in Maui. As soon as I managed to stand up and catch a wave, I thought, “Luke’s gotta try this.” Never mind that he’s 3, can’t swim, and had never been to the ocean before that week. He needs to get hooked on things that are pure joy and will make the grind of diabetes worthwhile. This had to be one of them!

And our instructor, M., was the man. 6’6″, incredibly patient, and able to hip-hop on the waves like a kid at a skateboard park, he had learned to surf by riding his dad’s board starting at 2. My ears perked up. “So we have a three-year-old who can’t swim…” I began. “No problem,” he said. “We can start with him sitting on my board – we’ll see what he likes.” (When Captain Cook arrived in Hawaii, he thought the locals were gods, “walking” over the water toward his boat. Had M. been part of that crowd, any women on Cook’s ship would have thrown themselves overboard immediately.)

We were back early the next morning, with grumpy toddler in tow. The logistics were a little challenging: how to take everything we needed for testing and low blood sugar into the water with us? Board shorts, LokSak bags (for BG meter and Dex), “Sugar Shots,” and a box of juice all came together. Board shorts should be standard D-wear: they hold everything! (And look really sexy when loaded up.) Luke wore his pump (BG goes high when he’s in the water, probably due to stress and excitement) and Dex, hopefully heading off the need to test for a couple hours.

M. took Luke on his board, and we headed out.

While Erik and I were shredding the waves…

Luke was having a blast with M. Before long, they went from splashing in the water to Luke riding on M’s shoulders to standing up (with help). The huge grin never left his face.

“We should head in closer to shore,” M. said. “There’s a shark.”

“Shark?” I yelped.

“Shhhhh,” he gestured, looking at surf classes spread out next to us. “Say mano.”

“Uh, so it’s a little one – a reef shark, right?” I asked helpfully, thinking of the small white-tipped reef shark I’d seen the other day whisking away like a cat.

“No, this is a big old one who gets hungry and comes in about once a month to feed on turtles.” Ah hah. The turtles we’d paddled out to watch yesterday – a few hundred yards away. And there we were, a bunch of haole flailing about on surfboards in murkey water while some cranky, near-sighted shark with low blood sugar was squinting about for a snack.  “Catch the next wave in,” he said, “and we’ll meet over by that rock. The other surfers are safe – we should just be extra careful with your little one.” Our little pupu.

I stopped asking questions. Erik later told me it was a tiger shark, longer than our boards (12+ feet).

End of drama, really – but surfing isn’t so different from trying to balance on an ever-shifting tide of carbs, exercise, moods, hormones, and a million other factors. Leaving the hospital with Luke two years ago felt like trying to surf when we could barely dogpaddle. We kept sucking down saltwater, looking out for lurking low blood sugars and unexpected rocky highs, and falling over and over.

But since then we manage occasionally to stand up and ride, and in those moments even the sharks can’t stop us from having a damn fine time.

Mini Oreo Bumps

When Luke’s BG started diving in the grocery store, we grabbed a bag of mini Oreos and stopped the fall with something more fun than apple juice.

Those 3 cookies (2.5 carbs each) showed up on the Dex like stones skipping across the water – three little blood sugar bumps.

The Dex quickly took a less poetic view of the Oreo bumps –

WTF???

Well, fun while it lasted!

(“Luke, you have chocolate drool on your face,” I said, mopping away while he tried to flirt with girls down the aisle. “Girls like chocolate drool,” he stated, with almost-three-year-old confidence.)