Animas No Mas

I poured my second cup of coffee this morning and opened Facebook.  There were pictures of a friend's new kittens and links to political commentary. And then this:

As the parent of a person who will, on Saturday, have been infusing insulin via an Animas pump for exactly 13 years, I have layers of concerns which range from the personal to the way this company's closure shapes the marketplace.

Today we'll begin at the beginning and consider the announcement itself. I learned the news on Facebook. Because I follow 'Children With Diabetes.' They posted a link to an undated, legalese-y notice posted on Animas' website.

We, as I mentioned, have been this company's customers for 13 years. Animas has our email, phone numbers and home address. We have not yet been directly notified in any way. Johnson & Johnson is a huge company. Surely they have a communications arm which could have handled this better? Direct mail timed to arrive today? A call or even a robo-call? Even something as simple as emailing the notice currently on their website. Not only does this feel unprofessional it feels a little like a bad teenage break up... Maybe if I tell enough people I'm gonna break up with her somebody'll put it on Instagram and I won't have to tell her.

Animas' notice includes the following cryptic lines for people in our family's particular situation:  If you are on a pump with a warranty that expires on or after September 30, 2019, you or your pump supplier will be contacted by a member of the Medtronic transition team concerning the option to transfer to a Medtronic 630G insulin delivery system at no cost. This sentence left me with more questions than I had to begin with.

Medtronic, it seems, has a better communications team. I found a link on Twitter to a clearer, kinder explanation. There was a nice line acknowledging that the transition will be "tough." There was also a very well laid out timeline chart which reassured me that customer support will continue to be provided for in-warranty Animas pumps through September 2019 and that we'll be contacted that May to discuss switching over.

But, according to the tiny bit of information I've gleaned so far, we'll be required to switch to Medtronic since we got a brand new Animas Ping system in March of this year, with a 4 year warranty.

Not only have we been broken up with terribly inconsiderately, we now have no choice over who to date next...

More on that next time.

 



The Drop-Off Line

For a couple of years now my daughter's had a little inventory she's run through before leaving the house for almost anywhere, except, for some reason, school:

"Phone. Meter. Dexi." If one of them isn't on her person or in her bag, she'll go get it. If she's got it all, she heads out the door.

On day seven of school I received a text: I forgot Dexi. The Dexcom receiver was, indeed, still sitting in the kitchen.

Day 10 brought a similar text, except she'd also forgotten the meter:

The school is only a couple of blocks away- a two minute drive at the most. Unless it's 15 minutes before school starts. Then it's an excruciating crawl with both vehicular and foot traffic clogging every route and intersection. Which is why, no matter the weather, and even though it's essentially a straight uphill climb, my daughter walks to school.

Accessing the school after classes begin is, as I learned last year when dropping off the Dexcom receiver, it's own kind of challenge. I was buzzed through two sets of locked doors and talked with a couple of school personnel, after which my daughter had to run through the nurse's office between classes to pick up the missing item.

So I drove to school, both times, pulling into the drop-off line with my flashers on while she ran out of the building to take things from me through the open car window before the first bell. She was efficient both times, but I imagine the people behind me still looked on with a combination of confusion and irritation.

While the texts may look terse in the photo, my daughter was, in person, both upset she'd forgotten her supplies, and incredibly grateful that I could drop them off. There's a spare meter at school, which she could have grabbed from the nurse's office if she had needed to. But the absence of the Dexcom info she's used to relying on made her uncomfortable, especially in the first week or two of school when the routine is still new and is therefore messing with her blood sugars.

"Phone. Meter. Dexi."

The inventory is now part of our morning farewell routine. If she doesn't say it, I do. One of the perks of our current house is that I, theoretically, should never have to withstand the ordeal of the morning drop-off line. Nobody should have to do so without a child in the car.

Back to School Year #13

My daughter went back to school this month- for the 13th time if we include the preschool years. It's still never easy.

Back to school is a challenge for most kids. There are difficult teachers, tough social situations, and strict schedules to keep.  But for my kid and many like her, fall's biggest stumbling block is diabetes.

The back-to-school diabetes problems are ever-present, but not always the same. Some years there's a new nurse who we have to meet and coordinate with. Some years there's a new activity which coincides with the start of school, adding another diabetes thing to think about. Some years the time of lunch has changed (like the 'year of brunch,' linked for you here though I'm going to choose not to reread and relive the horror). Some years gym proves to be a seemingly insurmountable obstacle (like last year, when at some points it was simultaneously terrifying and ridiculous). Some years there's a teacher who just doesn't quite get it. Or one who's extra nervous. This year we've added a daily walk to school, just a couple of blocks but most of it straight uphill.

There's one back-to-school diabetes challenge that's constant from year to year: the overall change in the daily schedule. August is lazy- featuring vacation, the backyard, books, friends and the pool. For the past couple of years August has also included sleeping late at least a few days a week, and alternate sedentary stretches of binge-watching Netflix and power-finishing summer homework. Going from a slow, sedentary start to 6:30 a.m. breakfast followed by a brisk walk to school would be a jolt to anyone's system. Adding diabetes requires an annual investment in juice boxes and a lot of dosage tweaking.

By the fourth day of school this year we'd already changed the breakfast bolus ratio and several basal rates. Twice.  And she was still eating glucose tabs every day half an hour before lunch. We've gotten that to the point where she's usually just barely 80 at lunchtime but then shooting way up into the high 200's late in the day- except when she has marching band in which case she's staying steady and then tanking overnight. We will not discuss what the weekend numbers look like with an ever-changing band/homework/fun/sleep schedule.

Every year kids face challenges going back to school, diabetes-related or otherwise. They come home and tell their parents, who provide any number of phrases to soothe them: This too shall pass. What doesn't kill you makes you stronger. Life's too short to worry about that. Just do your best. And so we'll continue to apply these same pithy phrases to our approach to managing the back-to-school diabetes adjustment. We'll do our best, making tweaks every couple of days, trying not to worry, knowing that we will get through this, stronger in the end, as we always do.

Endo Eclipse Day

A note: School has begun. A semblance of 'routine' is beginning to appear. The opportunity to dust off a couple of posts I began over the summer and never published has arrived. So, yes, you'll see a couple of stories here which might make you think you've time travelled. But eventually we'll be all caught up!

We were not in the 'path of totality,' but a partial eclipse is unusual too, so we were excited to experience it.

But there was a glitch. The peak of the eclipse in our area was expected around 2:45 and we had an endo appointment at 3. In a city a 30-45 minute drive from home. That ruled out the local library's eclipse event, and a few other cool viewing options. Instead, equipped with our homemade cereal box eclipse viewer, we arrived at our doctor's office building about 2:15.

Out on a busy city sidewalk, we watched the shadows in our cereal box slowly change. The light grew dimmer and weirder. Some people near us had eclipse glasses, some had viewers clearly made at the last minute out of office supply boxes. Some were taking pictures with their cell phones while debating whether it was safe to do so. There were a few familiar faces from the diabetes center, including our endo who was entering the building as we arrived. People from throughout the neighborhood and from all walks of life had seemingly abandoned their work to converge on the streets. While it certainly wasn't the viewing opportunity we would have chosen, watching it in a large and diverse sea of people was fascinating, fun and memorable.

"Doing some eclipse viewing, were we?" asked the doctor when we settled into his office chairs.

"Yup- why not?" I replied.

"Why not, indeed," he said.

We could have bailed on the eclipse viewing because of diabetes. Just like we could have bailed on countless other opportunities over the past 14 years. But we chose to find a way to make it work.

Why not?

Glucagon Training

A couple of weeks before my daughter went on the five night youth group trip I met with the chaperones to train them in glucagon use, and to talk about diabetes concerns for the trip. These are people I know well, which has a great deal to do with why my daughter went on this trip without a parent in the first place. They were eager to learn how to help my daughter have a successful first trip away, and how to react should an emergency arise.

We gathered at a table.

"Epi pens make me a little nervous," my first chaperone friend said.

"Well, wait until you see this thing," I replied with a wry smile.

He was, indeed, humbled by the sight of the glucagon kit.

"Here's the deal," I said once it was open in front of us on the table, "We've never needed to use this. We've never come close to needing to use this. You guys know her. She's responsible about her diabetes and she's self-aware. She's got the continuous glucose monitor which alarms when her blood sugar goes low. But because diabetes can be unpredictable, there's an infinitesimal chance you'll need this, so it's important to us that you know how to use it. And besides, once you see this, I'm certain you'll listen even more carefully to the rest of the ways I'd like you to look out for her." Cautious smiles had returned.

I walked them through step by step with an expired kit, and then one chaperone physically set up my second expired kit while the other gave verbal directions. They seemed to get the gist, and learned to look for the pictographs inside the packaging for clues. In the end, I reminded them that the first step would be to call 911 and that if they were flummoxed by the kit, the fact that they knew what it was and where it was would be key for the EMS workers.

After striking a healthy fear of glucagon into their hearts, we went over the very simple things a 15 year old kid who's out of her element might need their help with in order to avoid disastrous low blood sugar:

-Someone to hang back with her if she needs to wait out a low.
-Someone to ask her if she's okay if she's spacey or uncharacteristically emotional, which are the primary signs of low blood sugar for her.
-Someone to stand up for her if someone gives her a hard time about stepping aside when she should be doing her volunteer job, or eating when she "shouldn't be," or looking at an electronic device when the kids have been told not to.
-Someone to get up and nudge her if a dexcom alarm is going off in the middle of the night.
-Help getting supplies should she somehow blow through the snacks, juice and glucose tabs we packed.
-Support if (when?) diabetes causes missed opportunities or unpleasant experiences along the way.

In the end they didn't use the glucagon. In the end, it may not have been necessary to show them how to use it at all. But in the end the glucagon training led to a much more important conversation about ways to keep her safe. Which made all of us more comfortable.

The Trip I Never Thought Could Happen

My daughter is currently in a city 4 hours from here without a parent.

This is it: the moment I thought would never come.  No way. No how. She would NEVER grow up. At least not diabetes-wise.

I'm stunned that it's happening and even more stunned that I'm completely okay with it.

I was welcome to go on this trip- a service trip with the church's youth group. But this seemed, for several reasons, like the ideal opportunity for her to spread her wings.

Why now?

-She's as ready as she'll ever be. She proves it every day. She especially proved it on the high school's spring music department trip which I, of my own free will, volunteered to chaperone so that I could be there 'just in case.' There was no 'just in case.' She did it all by herself while I shared a room with a (as it turned out, perfectly nice) stranger and worried endlessly about the whereabouts and safety of the rest of the kids.

-This trip is relatively close, just a four hour drive should I need to get there. And it's in the middle of a major city so there are hospitals, ambulances and pharmacies readily available should she need them.

-It's a small group: 6 kids and 2 adults. One of the kids is one of my daughter's closest friends. These kids genuinely like and care about each other. The chaperone to kid ratio is pretty great too.

-Speaking of chaperones, if I had to pick two people to send my kid away with for the first time, these two adults would be at the top of my list. Their willingness to take this on was, of course, one of the essential criteria. They're also responsible, concerned, and willing to learn everything necessary to support my daughter. And, probably most importantly, my daughter trusts them and likes them and will therefore include them in any issues she's having- diabetes-wise, and otherwise too.

-Lastly, and probably most importantly, my daughter was willing to go without me. That's been the bottom line for every big step towards diabetes independence we've made thus far. This decision was no different.

So far so good, considering the fact that diabetes does not travel well. One HIGH with double up arrows on the Dexcom required an emergency site change. An 82 at bedtime required some thinking about what to eat in order to make it until morning (a cherry Nutrigrain bar with no insulin- and yes, she made to morning). Otherwise she's guessing carbs as well as I could, remembering to carry her sack of dia-stuff, and keeping an eye on the Dexcom. I'm grateful to have the Dexcom share so I can check in when I'm worried, but I'm checking less than I thought I might.

Meanwhile she's having a huge adventure, both with the volunteer projects they're doing and with the sightseeing opportunities they're squeezing in whenever they can.

It's hard to wrap my head around how we got from a teeny, tiny person with diabetes who was totally dependent on me for every aspect of her care to this particular moment. It wasn't one giant step. It was a million teeny, tiny steps and suddenly, stunningly, here I sit over 200 miles away. And, inexplicably, I'm really pretty okay with it.

Look at That!

"The lady with the Omnipod is still at the pool with her kids most days," my daughter reported the other night.

"And there was another woman there. She had a pump clipped to her bikini top but the tubing was connected to her hip.  It would make sense if the site was in her arm maybe. It looked uncomfortable to me.  Or like you could accidentally yank it out with your own arm somehow- but whatever I guess...it's up to her."

It's summer again, which is prime pump-sighting season, especially at the pool and the beach.

Last years' beach vacation tally was 2 dexcoms and an Omnipod.  Our town pool tally was 2 omnipods and a tubed pump a little too far way to identify the brand of.  Walking around various cities and towns added 3 more pumps that I can remember. 

We've never spoken to any of these people about their devices.

But we always speak to each other about them. "That guy has something on his stomach...over there by the purple striped umbrella...is it a Dexcom or an Omnipod?" Or "That lady's making me nervous standing knee deep in the water- over there near the jetty- I think that's a Medtronic pump, right- those aren't waterproof are they? The tide's coming in fast." We discuss where the devices are worn, attempts to disguise them or not, and how far down the beach the people with diabetes walk without bringing a meter or a container of glucose tabs with them.

It's fascinating to watch other people with diabetes in the wild. It's also comforting since every sighting-spurred conversation boils down to this: "Hey- look- there's another person with diabetes just living life," and especially at the beach or the pool, "and having fun."