G6

The Dexcom G6 is up and running, and it's keeping us running.

Technologically we're totally impressed. It's accurate. The readings flow seamlessly from the transmitter to my daughter's iPhone and the Dexcom receiver, and then on to my phone and the Dexcom Clarity page online. And no fingersticks? Amazing.

We used our previous CGM, the G4, only as a general guide. Heading up or down? Always alarms between 2-3 a.m.? Should she do anything before changing for gym? It was less accurate and had crapped out months ago on sharing numbers to anybody's phone, so unless it was alarming with an urgent low, it was mostly background noise to be addressed eventually.

The G6 feels less like a lowly assistant making suggestions from the corner of the conference room and more like the boss. What it says goes. Low predicted in 15 minutes? Eat something. Now! Suddenly skyrocketing? Drop your pants and check that site! Clarity shows you've gone over 220 after lunch five of the past seven days? Fix something!

Some of that is good for us. Most of us get lazy with diabetes at one time or another, and of late, we have. Having the G6 looking over our shoulders and nudging us at every turn is causing more action than had been happening here, at least in terms of more minor excursions from a target blood sugar range.

Some of it, though, is wearing. Already. After 12 days. (But who's counting?)

The alarms are driving us nuts. Starting it up over a busy school play weekend followed by a Thanksgiving week full of family and food certainly didn't help. Diner pancakes at 10 p.m., daily servings of stuffing, and pecan pie two nights in a row are rare treats, and as the schedule goes back to normal, alarms are settling down. We learned quickly not to have both the Dexcom receiver, and all of our phones set to alarm when all of them are in the same house. The cacophony and the subsequent process of silencing them all would jar anybody's nerves.

We're also struggling with information overload. The numbers are in our faces all the time. Because the previous system's data went only to its own receiver, my daughter would look at it at mealtime, before bed, and when it alarmed. Now can see numbers whenever she opens her phone. And with share operational again, I too can see numbers anytime I want instead of looking at the receiver once a day- or less. A diabetes-life balance is, in my opinion, a very important aspect of living sanely. It will take some time to figure out how to compartmentalize the extra information so that it does not overwhelm.

Was it worth waiting for? Absolutely. The steady stream of accurate data is incredibly useful. It helps with hour to hour decision-making. Once the bulk of the data isn't skewed by Thanksgiving food, the long-term graphs will be incredibly valuable in adjusting basal rates and bolus ratios. And maybe when the data settles down into a more predictable range we won't mind seeing it so often.

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.

Sharing is Caring

Back in October of 2014 I wrote a post entitled,  'Why We're Not in the Cloud.'  My reasoning centered around allowing my daughter to problem-solve her own diabetes issues as independently as possible.  I did not want to be hovering over her metaphorical shoulder, texting ' You're 68- did you go to the nurse?' Or 'Why are you still 250, didn't you correct that yet?'

Fast forward 2 years and we've just received and activated a Dexcom G4 Share receiver and downloaded the app on our phones.

 

Why, one might ask, the change of heart?

1.   My daughter wanted to be able to see her numbers on her phone.  She's a 14 year old high school freshman and that's the kind of stuff they're into. She thought it would be both 'cool' and convenient to be able to use her phone as her primary source of dexcom information.

2. Our family recognized that having a virtual diabetes care team was increasingly important. Gone are the days of a parent, nurse or other diabetes-aware individual being within shouting distance at all times. My daughter is doing more and more of her care and troubleshooting on her own, which is great.  But especially during the transition, it's comforting to know someone else has an eye on her numbers in case problems arise.

3. This one's all about me.  Being able to see her blood sugar on my phone will, I think, give me a little peace of mind when she's traveling on a school bus with the marching band, out late with friends, home alone, or when the school days are followed by long theater rehearsals.  I'm already not sure how I survived the first birthday parties and sleepovers without it.

4.  Because my daughter is busier, we'd rather spend the moments we have together talking about something more interesting than how her blood sugar went all day: was she low in gym, did she spike again after lunch, did the breakfast correction work okay? If there's an issue, then we can get straight to fixing it, otherwise we can talk about other, more interesting, news of the day.

For now the constant stream of information is addictive.  We're entertained, and occasionally alarmed. Only time will tell how this will end up working for us. I look forward to sharing the plusses and minuses in the weeks to come.

Sleepover Dilemma

Sleepovers at friends' houses always pose dilemmas: uncertain menus, late night activity, relying on the Dexom for alerts of overnight issues,  heavy breakfasts, and more; but this weekend was the first time I found myself in a quandary right here at home.

Home game sleepovers aren't completely uneventful, diabetes-wise.  We've had to check blood sugars at 2 or 3 a.m. with another child in the room, and even had to give juice or corrections.  To my knowledge the friend I desperately try not to step on as she dreams in her sleeping bag has never woken up.  Snacks and bedtime involve a more structured routine than most of our guests are used to but they are, of course, kind and flexible as any good friends would be.

Sunday morning presented a new quandary though.  I woke up at 7, and my daughter and her friend were, as expected, still silent in my daughter's room.  The Dexcom read 80, straight across.  At 7:30 it read 76 straight across and it was still very quiet in the house.  At 8, it alarmed:  69.  Here's my thought process:

At 2 a.m., the friend would certainly sleep through my barging in, but at 8 a.m., chances are good I'm going to wake her up.  I don't want to do that.  The sensor is only a day or two old and it seems to have been running a little low since we revved it up.  It's probably just still a little bit off.  And with the margin of error on all blood sugar readings if  I wasn't running in there at 76, how different is 69, really? But, of course, what if it's off in the other direction and she's really 50 and I don't do anything about it? If she's 50, that's bordering on dangerous.  But maybe it'll go back up.

By the time I'd hemmed and hawed over all of this, it was 8:20 and the Dexcom alarmed again:  under 50.  It buzzed four times since we had it set to vibrate first, then to beep if the vibration went unacknowledged.  Now at this point, I'd been listening very intently, hoping for any sounds of life from the bedroom.  I was pretty sure I'd heard my daughter moving around in her bed (there's a squeaky spring). So I put Dexi in the bathroom, on a shelf which backs up to the head of my daughter's bed.  A minute or two later it blared, "beep beep beep beep!" 

At which point I heard her get up, grab her meter and check, and get back into bed.  It was still quiet.  The rattles, clicks and beeps of the blood sugar check hadn't woken her friend.

Within 10 minutes, the line on the Dexcom graph started going back up.  My daughter's friend woke up a few minutes before 9, and they came out for breakfast soon thereafter.

"I guess you corrected when Dexi alarmed at 8:20?"

"No- I was 88.  I just got back into bed."

Should I have acted sooner?  Probably.  A severe low blood sugar emergency would have been worse for the friend to wake to than me creeping around her air mattress.  But am I  glad I didn't wake her up for nothing?  I am.  What would others have done in my shoes (or slippers)?  I'd love to know.

Not a Full Moon

As we pulled out of the parking lot and headed towards home, I turned to my daughter and asked, "Is it a full moon?"

"I don't think it's even close, but wow."

This week's endo day was full of chaos.

The traffic on the way in was full of terrible drivers making bizarre decisions.

As we turned into the parking lot, I let out a sigh of relief.  "Finally someone will take this car away from me for a little while." That was before the valet attendant nearly ran over my daughter as she tried to enter the building.

The bustle was evident as soon as we entered the clinic doors. Phones were ringing.  There were several patients waiting at the front desk.  Staff were scurrying around.  We took the last available waiting room seats and waited to be called for the traditional first step of height, weight, A1C and meter downloading. We were half an hour early for our 4:00 appointment, so expected to sit a little while.  A big dent had been made in homework when at 4:10, our endocrinologist himself came around the corner.  "Do they know you're here?" he asked.

"Yeah...I mean we checked in..."

He disappeared into the height, weight, etc. room and seconds later my daughter's name was called.

He took us into his office before her pump had finished downloading and started with the preliminary conversation. Soon the pump and its information had been delivered.  "So we were talking about lows, but I'm seeing a lot of high numbers here in the evenings."

Indeed, the week we were viewing had some awful looking 270's and 300-somethings.  Which didn't sound familiar at all.  Knowing that sometimes they print out a week or two back, I glanced over at the date.  "This says it's from August."  (Vacation week to be exact.)

On we went like that, with the doctor needing to take my daughter's pump in hand to accurately see and discuss the current basals, total daily dose, correction factors, and insulin to carb ratios.  We used the downloaded Dexcom graph to discuss some potential treatment changes. We came away with a few suggestions for dealing with the recent school lows, and a minor tweak for afternoon.  But it was hard to see the direct impact of insulin doses on blood sugars without the pump download. We never received the A1C results.  They'll let us know.  Maybe, I guess.

This is a top-notch clinic, with which we've always been happy.  I'm sure there's a good explanation for whatever trouble the medical assistants were having. There was at least one unfamiliar face in the back room, either new or subbing.  I overheard at least one other conversation about difficulty downloading data.  I'm pretty sure the whole thing was a fluke.  It would just make more sense if I could blame a full moon.

Dexi

Dexi became a part of our family a little over a month ago.

She's our new dexcom continuous glucose monitoring system's receiver.

Upon her arrival, my daughter named her.  And over the past month the creative team here has personified her.

New questions and phrases have become part of our household lexicon:

Where's Dexi?

What does Dexi say?

Dexi's confused. Dexi's number and blood sugar number are very different.

Dexi's lost. The transmission signal has been lost between sensor and receiver.

Dexi is eating pie. The warm-up time for a newly inserted sensor shows a pie graph.

Dexi is thirsty.  When she needs to be calibrated a blood drop image shows on the screen.

Dexi is really thirsty.  Sometimes she needs two calibration numbers and shows two drops.

Dexi's yelling at you.  High or low alarm.

Keep an eye on Dexi while you're sledding.  Similarly, eating party food, staying up late.

Is Dexi in your purse? Similarly, on your pants, in the kitchen or did we leave Dexi in the car?

Dexi slept through the night.  I love it when she does this!

Friends and family are initially confused.  Some think we've gotten a cat, or brought another child to the party.  While some of them probably go on to conclude we've lost our marbles, most are amused.

What matters most is that it amuses us, and makes it much more fun to talk about and use this new medical device.

First Impressions

While it's just a few days 'til Christmas and I have mile long to-do list, I wanted to share just a few first thoughts about our new Dexcom.  Better formulated thoughts, perhaps even in complete and proper sentences, will follow after the first of the year.

What I like:  

• Finding trends and trying to fix them
• Knowing what happened during the school day
• High and low alarms
• Not worrying about her sleeping in
• Not checking a million times the day she had a stomach bug

What I don't like:

• The adhesive needs to be supplemented early and often.
• The receiver has spotty service in our bedroom. 
• The inserter is still scary.

What my daughter likes:

• The trend arrows help for better decision-making before gym, sledding, etc.
• A quick glance shows if a correction or low treatment is working
• Knowing it will alarm if she's low or high

What my daughter doesn't like:

• The sensor is awkward under a leotard
• Inserting a new sensor is scary (though the second time was better than the first)
• Worrying about the adhesive and whether she needs to add tape so it doesn't fall off

After the first one fell off (it had outlived its intended lifespan so it was fine) I wasn't sure what we'd do.  Our original agreement was that she didn't have to wear it all the time, that breaks were o.k.  All the pros and cons above are hopefully interesting and helpful, but the bottom line is this:

My daughter couldn't wait to start up a new sensor.  She was concerned she didn't have it while sledding at a friend's house.  "I wish I'd known which way that 102 was going, Mom."  If she likes it and finds it useful, then it's a keeper.

The First Time

Binge viewing videos about Dexcom sensor insertion eased my anxiety, but the person for whom it was being inserted was still pretty nervous about the whole thing.  Understandably.

Once I felt prepared, I gave her the choice of whether to start right away or wait a day.  I expected her to wait, but she decided she was so nervous about it that she'd rather get it over with.  So before we knew it, she was reclined on a pillow, belly exposed.  With one hand she had a vice grip on her stuffed rabbit.  With the other she was scrolling through pictures on the ipod.

The first obstacle was that she's very ticklish.  So every attempt to come near her, even with an alcohol wipe to clean the area, was a met with flailing hands (rabbit included) and giggly yelling.

Once we'd chosen and cleaned the area, we unwrapped the inserter.  We peeled back the adhesive and stuck the contraption to her skin.

This is when she balked.  "No!  I'm not doing it.  I can't."

Negotiations ensued.  See above for her arguments.  Mine included: 'We've gotten this far...we can't turn back now.'  'Let's just get it over with.'  Less helpfully, 'This thing cost us a lot of money...we're not wasting it.'  More helpfully, since it made her laugh, 'If you don't let me insert it, I'm going to leave the whole thing stuck to your stomach and you'll wear it that way for a week.'

We spent 20 minutes sitting on her bed, her with the giant applicator taped to her stomach.  At one point, she thought it might be easier if she pushed the plunger herself.  Ultimately she decided she'd rather close her eyes and strangle her rabbit.

Finally she did just that.

I pushed the plunger, heard the two clicks, and pulled the collar up for two more.  Except in super slow-mo. I'm guessing my hesitancy and wanting to be sure I did it all right caused it to be more painful than it will be once we get the hang of it.

"Did it hurt?"  I asked.

"YEAH, it hurt."

"Did it hurt as much as you were afraid it would?"

A half smile.  "No.  I guess it didn't."

The Decision

Regular readers will recall our 'mystery story' of a few weeks ago.  In a nutshell, my daughter was checking her blood sugar on a variety of meters at school and came up with numbers ranging from 140-348.  What I left out of that post was the tail end of the episode.  As we left the nurse's office, for her to return to class and me to try to remember what I had been doing before the phone rang, my daughter made a statement.

"This is why I need a CGM {continuous glucose monitor}."

We'd been talking about it on and off for a year.  The endocrinologist had given us his two cents and was ready to write a prescription if and when we decided to get one.  A friend of my daughter's got one a little less than a year ago and we'd both been watching her experience and asking lots of questions.  We'd been online, looking at the company's website and at personal experiences of bloggers.

We'd been going through a series of mysterious and challenging numbers. I was increasingly ready for Dexcom's graphs, predictions and trends, but we still had some reservations.

These doubts had mostly to do with having another 'site.'  How much would it hurt going in? Where would it go on her slim little body? Would it show under shirts?  Ballet leotards?  Bathing suits?  Would she care?  How much?  Would it be uncomfortable?  Would it get in the way?

There was also the matter of another device to carry.  She's already carrying a meter kit, juice box and cell phone. All of this fits into a cute little purse not too bulky to carry around at school or to a friend's house. The Dexcom receiver is small, but add a protective case of some sort and it gets bigger.  Would she need to ask Santa for a purse as big as she is?

Because these concerns were important to my daughter, they were important to me.  I needed her to tell me that she was willing to accept the discomfort and responsibility which would come with wearing another device.  I needed her to want it not just because it would help me and her medical team manage her blood sugars better.  It was important that she realize how it would help her in everyday situations, and indeed she did.

"This is why I need a CGM," she said.  That was all I needed.  I went straight home and picked up the phone.  We now own a CGM.  In fact (spoiler alert for future posts) she's wearing it right now.

And so far she likes it.

Research

It was tempting to rip the packaging open last Wednesday and click-click a Dexcom sensor into my daughter.  My cautious nature stopped me.

In fact Dex is still nestled in its packaging, though not as tightly as it was last week.  

I've taken it out and set the time, set up the alert parameters, and played with the different sound choices.

I've read through the start-up info and viewed the online tutorial.  

This is where I keep getting stuck:

This terrifying looking contraption will insert the sensor onto and underneath my daughter's skin.

Every time she looks at it, my daughter says, 'that thing's just scary looking.'  It's not really said with terror, just as a matter of fact. And she's right.  

I spent some time yesterday trying to alleviate my apprehension about this process by typing 'dexcom sensor insertion' into my trusty search engine.

Guess what?  It worked.

This video from Diabetic Danica and this one by One Happy Diabetic were the best for what I needed, which was to see how to use this thing on a real person.  I needed it explained step by step in a peer-to-peer sort of way. Watching multiple videos taken from multiple angles was helpful too.  One person, for example, made it very clear how to tell if the transmitter is clicked into place perfectly by checking the two little tabs in the back. Others showed helpful adhesive advice. This one from Arden's Day was uniquely great since it shows a dad putting it on his child.  It's the one I'll show my daughter before we begin.

Blogs were helpful too.  Bigfoot Child Have Diabetes' kid is in my kid's age range, and she's funny, so her recent dex experience was helpful to review again.  Diabetic Advocate's  tips and tricks were clear and practical.  As always,I consulted  D-Mom Blog and SixUntilMe too.  

I read and watched and skimmed countless other resources, and every one had something helpful or reinforced the key things to remember as we start up this week.  

So in a nutshell, 'Yay Diabetes Online Community!'  Advice from the manufacturer and our medical team is, of course, paramount.  But seeing and reading about real people using this gizmo in real life was the extra piece I needed.  My confidence has been built.  Thank you!

Wordless Wednesday: It's Here!

Too late to get it revved up for the big feast, but something to be thankful for nevertheless.

Happy Thanksgiving! 

When Is Enough Enough?

After our last endocrinologist appointment at the end of the school year, we decided it was time to look into a continuous glucose monitoring system.  We also decided that we'd wait until fall.  This decision honored my daughter's concerns about having things stuck all over her during bathing suit season as well as my concerns about keeping things adhered to her during the season of water and sand. 

At the end of the summer we visited the orthodontist.  The idea of some kind of braces sometime in the future transformed into definite braces this January.  These won't be just run of the mill braces.  We left the appointment understanding that she will be chewing with only her four back teeth for between eighteen  months and two years, and that she will be wearing head gear, thankfully only at night.

So here she is...about to turn twelve.  She's growing quickly, and at that adorable-only-to-parents awkward, gangly stage. She already has an insulin pump toggled to her at all times.  She already has to carry around a bag full of accouterments everywhere she goes.  Now we're going to fill her mouth with metal, make eating anything coarser than applesauce a challenge and attach head gear to her at night.

Can you see why her enthusiasm about the CGM is waning?  Tacking on another bionic piece and adding another item to her already overloaded purse doesn't sound so appealing, no matter the benefits.  Lets add that it will probably beep at the most humiliating times.

Can you see why, if she knew anything about 70's television, she would be asking why we want to turn her into the bionic woman? 

We'll still proceed with the CGM.  Once those crazy braces go on, it will probably be even more important to keep a closer eye on those blood sugar numbers, at least until she gets used to eating with them. 

But from a psychosocial perspective, I'm reluctant.  Everyone's awkward at 12.  How much equipment can we adhere to her before the balance tips from awkward to crazy robot girl?  When is enough enough?