Piecemeal

We talked technology at last week's endocrinologist appointment. My daughter is using an Animas Ping pump and a Dexcom G4 CGM. The Animas can be serviced or replaced for another year before we'll have to switch to Medtronic for the last two years of its warranty. The Dexcom version we're using is almost obsolete, so we have to change something, but the question is, how much?

We could close our eyes and jump headfirst into a full switch to all things Medtronic. We would likely be transitioned to their 630G model which works with their Guardian brand CGM system and a Contour meter as a meter remote. This pump would suspend insulin delivery when low blood sugar is detected by the CGM sensor.

The low glucose suspend feature would be reassuring, especially for those few nights per year that my daughter spends away from us. On the other hand we've heard mixed reviews of the Medtronic sensors, in terms of accuracy and calibration neediness. We hear they're improving with each version, which is incentive to wait a while. There is already a more current Medtronic pump, which adjusts the basal rate every few minutes based on feedback from the CGM.. We wonder if we wait a year if we'll have the option of switching directly to their most recent version, whatever that is at the time, which would surely have more bells and whistles than the current offer.

Our other option is to keep the Animas pump for another year and upgrade to Dexcom's G6 CGM. The G6 requires no fingersticks for calibration, and can be worn for 10 days before changing the sensor. The CGM data can go straight to my daughter's phone, and be shared with us from there, or we can choose to use a receiver. The reviews of its accuracy are stellar.

My daughter is comfortable with the Animas pump, and super-excited about the Dexcom G6. So the plan is to move forward with those for the next year.

It feels like a piecemeal solution. But it's not a perfect world. Insurance and corporate deals dictate the diabetes choices we can make. We are destined to be Medtronic people.

Just not yet.

After Midnight

"Mom?"

"Mom?"  My eyes must have opened slightly, or I mumbled something.

"Something's wrong with my pump."

And then I was awake.

"It was beeping when it woke me up … booEEp, booEEp … but now it's dead. Nothing happens when I push the buttons. And it's hot."

It was the wee hours of the morning. We were on vacation in a cottage near the beach.

"Ok- let's see."

I got up and followed her back to her little room where we turned on a light and set to work.

Hoping the simplest explanation was the right one, I took out the battery, using a coin from the pile on her bedside table set aside for an expedition to the penny candy store. The battery was hot.

I inserted a new battery and screwed the cap back on. I prayed, thought good thoughts, and implored the diabetes gods for mercy. The pump would spring back to life. We would not, in the middle of the night, on vacation, have to go back to injecting insulin for the first time in 13 years.

Time stood still for an infinite moment and then, there it was, the familiar alien-like startup beep of the Animas pump. I confirmed, when prompted, the battery type, and the date and time, which were reassuringly still correct. Then, as the pump requires with every battery replacement, I set in motion a full rewind of the cartridge area. Knowing that the full rewind also signals the pump to perform a full system check I once again sent out pleas to the universe that a pump failure would not, please, be among our vacation memories.

The motor whirred. And whirred. And whirred. And then...

"beep!" Just the usual, friendly little 'I'm ready,' beep. I finished the process and my daughter reconnected.

Still more than a little freaked out, and now wide awake, I photographed every pump setting, not sure if my most recent records were recent enough. I tucked my daughter in and returned to bed where I lay; not at all optimistic that the crisis had actually been averted. I considered all of the options for obtaining a replacement pump if need be. I sorted out what I could remember about multiple daily injections. I tried to figure out what had happened in the first place. I got up twice to make sure her blood sugar was staying steady- that the pump was still working correctly.

In the light of day, with the pump working properly again, the explanation seemed fairly logical. The hot battery was familiar from times we've changed it after the 'I'm going to die in half an hour or less' warning. The initial low battery warning, indicating a couple of days' power remaining, had been visible on the pump for at least most of that day, my daughter said, and she'd planned to change it during the next day's site change.  But it's possible it had been there longer, since we were in vacation mode and, as is our custom, paying less attention to diabetes than usual while enjoying vacation things. Or maybe the battery died a little faster than usual with all the extra use for vacation food. Maybe the pump alarmed for the full half an hour foretelling its imminent demise, and simply didn't wake my daughter from her vacation-induced deep slumber - we'd been out late and came home tired.

All that really matters is that the new battery continues to work just fine, a couple of weeks later, and we were able to enjoy the rest of our vacation.

Still Lending a Hand

Our family has experienced several turning points over the years when it comes to my daughter taking on increased responsibility for her care.  To us, each of these has been a big deal.  She can check her own blood sugar!  She can troubleshoot enough to be left alone at a birthday party!  She can count her own carbs at a restaurant with friends!  She can change her own site!  She can go away overnight! The list of these moments is long.  For some families, this list doesn't exist at all because their kids were diagnosed at an age when they naturally took on all or at least most of these tasks independently from the start.  For others of us, it's been and continues to be a long incremental journey.

Sometimes I feel weird, or even guilty, that I still help my daughter with her Dexcom sensor insertions or that until a couple of years ago I did almost all of her site changes. The little voice in my head nags,  'She's a teenager for goodness' sake- she should be doing all of this by herself.  Other kids are doing it by 8.'

But if I step back and reflect on how we got here, it feels okay. 

When she was diagnosed at 13 months old, we did EVERYTHING.  Obviously.

Then around 3 she wanted to help...as many 3-year-olds want to do.  It's the 'I can do it by myself 'age and we took full advantage.  She learned to use the lancet and apply blood to the test strip.  She learned to read the number on the glucometer out loud.  She learned to gather all of the supplies for her site changes.  She was in charge of separating the various wipe packets which come in perforated pairs of two. She also spent quite a bit of time taking care of the diabetes needs of her dolls and stuffed animals who, occasionally, also had to count carbs at tea parties, check their blood sugar or drink juice boxes.

By the age of 5 she knew how to use her insulin pump, with supervision and an adult counting the carbs. She knew to drink a juice box if her meter said she was low and to wait 15 minutes and check again before she could go back to what she was doing - again, with an adult around to support her.

In early elementary school she learned how to count and bolus for a simple snack like goldfish crackers or pretzels so that she could go to a friend's house after school.

If she WANTED to do it, we figured out how to make that happen.  If she didn't want to, we didn't push. 

She now, of necessity, knows how to do it all. And yet, still, I help if asked. Diabetes is a huge undertaking. For now, the least I can do is give her a hand filling the insulin cartridge if she has to do a site change in a hurry, or be an extra set of hands for the awkward Dexcom insertion.  She's going to have to do it all by herself soon enough.