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.

The Gatorade Trick

I have no official connection to Gatorade, and this is not medical advice, but marching band practice is well underway here, and I have stocked up...

Gatorade's low-carb G2 is my daughter's go-to drink for evening marching band practice.

We first tried G2 for middle school volleyball which was a slow-paced, instructional, noncompetitive evening rec. league activity. We tried it mostly as a compromise because middle school is the era of 'all my friends are...,' and all her friends brought Gatorade to volleyball. As it turned out, it also helped her end up with better blood sugars than on the nights she didn't take it to practice.

There are eight grams of carbohydrate in twelve ounces of G2.  About that amount, poured over an abundance of ice and sometimes diluted with water to fill a large container, sipped slowly over the course of a 3 hour marching band practice, is just about right. Infusing just a few carbs per hour to burn off immediately seems, for her, to keep the lows at bay.

We've tried, as an alternative to this plan (generally when I've neglected to stock up at the grocery store), bolusing less insulin for pre-practice dinner, which just leads to an immediate spike. We've set temp basals, which lead to overnight highs. The Gatorade is what works for her.

Two years in, there have been 2 occasions when she's had to sit on the sidelines for a few minutes for a significant low to come up. That's with hundreds of hours of practice and performance.

It's obviously not just the Gatorade. A solid, healthy meal before practice, assessing the Dexcom or glucometer at breaks and reacting accordingly, and having a well-stocked bag of diabetes tricks including healthy snacks and fast-acting carbs are among countless factors crucial to staying in range enough to participate and enjoy the activity.  But on occasions when I've neglected to replenish the Gatorade supply things have not worked out as well.

A Long Night

It's 10 p.m. The teenager has been home for an hour from band practice. She has showered and is thinking about going to bed. She checks her blood sugar in order to calibrate the Dexcom.

"WHAT?!?!"

The parents watch warily from the couch while the teenager gets another test strip and rechecks her bg.

"WHAT IS GOING ON??? HOW IS THAT POSSIBLE??? HOW DID THAT HAPPEN???"

The teenager is distraught.

"Mom...can you help me do a site change so it goes faster? APPARENTLY I'M 485."

The mother rises wearily from the sofa, her plans for quiet time with her book followed by a good night's sleep dashed. She fetches a large glass of water for the daughter, in hopes of keeping ketones at bay.

"Yup. Drink this first. What happened do you think?"

"I DON'T KNOW!!!"

The teenager is grumpy, irrational and teary. Probably because of the blood sugar of 485. She gathers herself for a moment.

"I don't know... I was fine at dinner - 130 something. I don't remember Dexi alarming at band but it must have. It alarmed again a little while ago. But not that high. It's been iffy all day- it's like 10 days old - but I didn't know it was that far off and now I'm really high and I don't know WHY!"

The mother and teenager go off to the teenager's room to change the site. The chain of events leading up to the current situation is reviewed.

"I bolused dinner - I'm sure..." opens the pump's memory and double-checks "yup- and it wasn't a lot of carbs and you used the measuring cup. And then I just went UP! And I didn't eat anything at band- I just drank my water and I never had anything when I got home and now I'm SO HIGH FOR NO REASON."

When the site is removed the cannula is gunky, clearly clogged up. The mother thinks out loud.

"I don't think, in 13 years of pumping, you've had a pump site conk out that quickly. Usually they take a gradual turn for the worse, but this one seems to have suddenly and completely stopped working. That's the only logical explanation to go from 130 to almost 500 in 4 hours."

The teenager curls up on her bed, nursing her second pint of water. She is clearly miserable. She complains of a headache.

"... not just in one spot but like...my whole head...it just hurts...it's awful."

The mother initiates calming conversation … a friend's new puppy, a funny story someone posted on Facebook. Eventually, it's been 30 minutes since a correction dose of insulin was given. The teenager rechecks and is now just barely over 400. She gets up to brush her teeth and finish preparing for bed. The Dexcom alarms... FALLING! … and hope increases that the correction dose will work.

The teenager goes to bed. The mother gets to read her book, but for much longer than she'd intended, staying up until 12:30 a.m., when the blood sugar has dropped to 230-something.

The mother is awakened at 2 a.m. by the Dexcom alarm (which is now, incidentally, spot-on again) and gives the teenager some juice for a bg of 76.

The father gets up at 3:45 to give more juice for a bg of 68.

The family gets up in the morning. The teenager has a bg of 77. They are all tired. They are all grateful for the discovery of insulin. But moreso now for the discovery of caffeine. .

False Advertising

I love this sale.

We will stock up.

They will fit perfectly into my daughter's diabetes bag.

I am grateful for portion-controlled 15 carb. servings of juice.

But I will not. Ever. Refer to them as "Fun Size."

I Almost Asked

My daughter's Dexcom G4 sometimes chooses to stop 'sharing' these days, making its receiver the only source of information. When this happens, as it did this week, I try to take a quick peek at the receiver once in a while, just in case we need to talk about tweaks in the basals, carb ratios, correction factors and such.

I looked at the receiver this morning - it was on the table after breakfast - and yesterday morning showed a spike, reaching the top of the graph, and hanging there for an hour or so before coming back down to a reasonable range by noonish.

My initial instinct was to ask something along the lines of, 'What the heck happened yesterday???"

Then I realized three things:

1. I already knew what happened  yesterday. Her grade had a delayed opening because of standardized testing at the high school. She had been out to breakfast with friends and she ate eggs and toast and potatoes- which was a better choice than pancakes - but she clearly either under-guessed on the potatoes or forgot to bolus until too late.

2. The evidence showed that she'd picked up on her mistake, corrected her blood sugar, and gotten herself back in range by lunch. She had solved the problem by herself.

3. Nit-picking is counterproductive. She'd just get defensive if I brought it up, no matter how much I tried to turn the conversation towards 'all's well that ends well.'

So I didn't ask.