Thankful

Unlike last year's expedition, which could have been subtitled, 'airplane flight to 5 days of walking in chaotic environments,' this year's music department trip seemed like a manageable adventure. It was a four hour bus trip to spend 3 days and 2 nights in and around an interesting city. Because of the presence of a great school nurse, concerned chaperones and staff, and friends who have my daughter's back, we decided, with my daughter, that she'd travel without a parent. Here's the note [with awkward edits for privacy] I sent to the band director on the Monday after this year's trip:

Just a note to say thanks for a great music trip.

 

What a nice opportunity it was for the kids to attend Thursday's concert.  [My daughter] was especially excited to see such an incredible piano concerto performed. 

 

Between the concert, the chance for feedback and work on the concert band's competition pieces, and a fun and interesting collection of places to explore with friends, [my daughter] had a terrific time.

 

We're always happy to be involved in the life of the band, including chaperoning. But we're also grateful for the steps you and [the high school] as a whole have taken to allow [my daughter] to participate fully and safely without us present, encouraging her growing independence both diabetes-wise and beyond.

 

Looking forward to hearing tomorrow night's performance!

I mailed a similarly thankful note to the nurse who accompanied the kids on the trip. My daughter was in touch with her regularly via text, and they always knew where the other was. The nurse carried a little bag (within her giant 'nurse bag') with glucagon, glucose gel, and a spare meter set. Her assistance was never needed.

These notes reflected my acute awareness that my child was fortunate to have such a fun and positive trip.  There are other kids who are allowed to have these kinds of experiences but with much less quality support. And there are kids who are told (illegally but indisputably) that they can't participate at all. For three days Dexcom Share was my most-used app. The texts about the frosted flakes for breakfast and the bus full of rice crispy treats were cringe-worthy. But mostly, I'm thankful.

Like a G6?

We upgraded our Dexcom system a few weeks ago to the G4 Share.  Why, you may wonder, didn't we go straight to the newest Dexcom system, the G5?  And what's the difference, anyway? 

Here's what we learned about the distinctions between the two:

-The G4 Share sends data from the transmitter (worn on my daughter's body) to a receiver (within several feet of the transmitter). The receiver has a screen on which the data is viewable, and it alarms for high and low blood sugars.  The receiver then sends data to a paired smartphone (in this case my daughter's). That phone, in turn, can be set to send data to other smartphones (in this case, mine and my husband's).

-The G5 Share sends the data straight from the transmitter to a smartphone, bypassing the need for a receiver.  There is an option to have the data go to a receiver instead, but it cannot go to both places.  From what I've read,the distance over which the G5's transmitter will send its data is shorter than that of the G4's transmitter.  The share part works the same way, with the option to send data on from the primary smartphone to designated recipients.

Here's how we thought through our decision:

-My first consideration was that I didn't want my daughter's phone in her room at night.  The temptation to text, stream Netflix and/or scroll through Instagram would be entirely too great. Because of it's reportedly shorter transmission range, I wasn't confident that the G5 transmitter's signal would reach through the wall to the adjoining bathroom or hallway. And even if it did, I had another issue:

-I didn't want my phone in my bedroom at night. Much to the chagrin of a few of my friends, I'm known for putting my phone 'to bed' by 9:30 p.m.  If I were using it for Dexcom alerts I would not only need to leave it next to the bed, but also leave the sound on.  This wasn't appealing if we could continue our current practice of using a receiver with a longer signal instead.

-We then began to consider where else my daughter wouldn't or shouldn't have her phone, even if it were part of a medical device. It would be hard to carry a phone during gym class.  What about marching band practices and competitions?  Theater costumes don't often have roomy pockets.  The size and simplicity of slipping a much smaller-than-an-iPhone Dexcom receiver in a pocket or clipping its case on a waistband seemed much more convenient in these situations than finding somewhere on her person to stash the phone.

-The receiver emits a unique series of vibrations and/or beeps to alert its user of low or high blood sugars.  This would make it possible to be alerted of, and to address, a problem even if the receiver were silenced and tucked deep and irretrievably in a uniform or costume.  Two vibrations for high, three for low, four for very low.

-The receiver's information seemed more quickly accessible.  The receiver is usually clipped to her waist band or in her front pants pocket. At the push of one button to wake up the screen, she can see her current number, a trend arrow, and a three hour graph.   With the phone, there would be the process of locating it in her bag, unlocking it, opening the app and then being able to see the data before putting the phone away again.  More steps would make it harder to be surreptitious and more likely to get questioned or looked down upon for using her phone inappropriately.  Was it worth the extra conversations and dirty looks?

It was a tough decision, mostly since my inclination is usually to go with the very newest technology, but I'm convinced we've made the right choice for our family at this moment.  Now we can stop thinking about it until we have to decide whether we'd like a G6 or a G6.

Share Scare

Marching band practice started at 6:30.  Soon thereafter my phone started emitting a sound alarmingly similar to a fire alarm in a large building.  I grabbed it and discovered this:

 

I don't text my daughter for moderate lows in the 60's range. Those I trust she can handle just fine on her own, just like she did 3 weeks ago before we had this technology.  The same is true, so far at least, for any issues at school.  She's got teachers, friends, and a school nurse there to help her. 

 

But this was unsettling.  The band was outside.  It was getting dark.  What if she'd stepped aside to check and nobody noticed her?  I texted:

 

My phone is alarming about this low...assume you're treating it?

 

Five minutes passed with no response. It felt like 15. The next time the number updated it was 46, still straight across. I could hear the band from the high school, just up the hill from our house. I texted again:

 

???

 

A few more minutes passed and another glance at my phone showed me this disconcerting screen:

 

As the minutes continued to creep by with no return text, I considered all kinds of possibilities. Was she:

 

Keeled over in the dark on the sidelines somewhere far away from her phone and supplies?

 

Being taken care of by a responsible adult somewhere not near her bag?

 

Still marching, unaware she was this low?

 

Perfectly fine and wearing a 12 day old Dexcom sensor that was giving flaky information?

 

I started to gather my shoes and my jacket.  How long was it okay to wait before going?  How horrified would she be if I showed up there and it was a false alarm?  What if I didn't go and it wasn't a false alarm?  A few more minutes passed as my thoughts swirled. I decided to wait it out until 7:30 when I was planning to leave the house for a meeting anyway.  I'd just casually drive by on the way...even though it wasn't on the way at all. 

 

But then, finally ... a text!

 

I was actually 79.  Drank a juice and kept marching.

 

We're finding lots of reasons to love the 'share' technology.  This evening of scary misinformation wasn't one of them.

 

 

Information

 

 One bit of wisdom shared often by both professionals and veterans of the diabetes community is about how we react to blood sugar numbers.  The numbers are, the wise people tell us, neither good or bad.  They are simply information.

 

A blood sugar check should be a 'no judgement zone,' the theory goes.  The sole purpose of the number is to tell us what needs to happen next:  a juice box, a correction bolus, a regular meal bolus, and nothing at all are all possibilities.

 

It's pointless, we're told, either to express elation at a perfect 100 or to throw the meter across the room over a 357.  Tying feelings to the numbers has the potential to lead to unnecessary frustration.  It can lead to checking less often for fear of getting a "bad" result.  It can lead to spiraling emotions when things inevitably derail; emotions which could get in the way of being clear headed enough to make necessary adjustments. 

 

So it is with this philosophy in mind that I look at the now-constant stream of blood sugar numbers available on my phone thanks to our new 'share' technology.  Take this day for example:

 

The information tells me that my daughter's blood sugar was more often higher than her target number and lower than her target number than it was anywhere near her target number.  I'm informed that if we averaged all of the numbers together, we would come up with a number close to the target  number.  The graph informs me that steps were taken throughout the 24 hour period to return blood sugar levels closer to the median but that those attempts had more than the desired effect almost every time.

 

But it's incredibly difficult not to look at this graph and utter a few choice words, non-informational in nature.  It's hard not to see how crappy a day this was, and to wonder what we're doing wrong to make this happen; how things have spiraled out of control like this. 

 

While I don't discount the wise people's theory, I think there's a balance. I do not want to get so frustrated that I stop looking at the numbers.  I do not want to say things about the numbers which imply a sense of guilt.  But sometimes, at least for me, it takes a little anger and frustration to get me moving or, in the case of this fall, keep me working until we figure this whole high school schedule out.  Because, really, I'd prefer the information steaming onto my phone screen always looked a little more like this:

 

 

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.