I just might have a problem that you'd understand

Arden's blood sugar fluctuates, that's no surprise to me or to you. It goes up and down, somedays more then others. There are times when it stays steady and the line on her DexCom CGM seems to be perfectly still.

My very soul feels attached to that line and I ride it like a roller coaster. Most days I don't feel the stress or hold myself personally responsible for where that line goes. I just do my best to keep it steady. The amount of care and effort that goes into managing that line is immense. It starts with grocery shopping as I try to plan meals that are healthy and have a low impact on Arden's BGs. It's tough with younger children because I'm also trying to find foods that they enjoy while gently directing them to healthy choices. Then there is pre-bolusing, the act of administering insulin before a meal to aviod spikes in that line, administering the insulin, watching that she eats and on and on. It must sound strange to an diabetes outsider but all of that is incredibly stressful and it happens every few hours.

The stress stems of course from the knowledge that high BGs are dangerous to Arden's longevity and the lows are no better. The real source of my terror is that I know Arden isn't feeling her best when her BGs aren't in range and steady. Every meal, every snack is an oppurtunity for her to live an hour or three in a way that any parent wouldn't want for their children. I feel all of those minutes in my heart in a way that would take a thousand words to describe.

When she seems to space out on the sofa as her insulin struggles to bring her back to normal, I feel like a die a little inside. When she falls to sleep at night as her BG drifts down, I watch hoping that it will stop where I need it to. When it doesn't and she gets too low, the moments strikes at my soul. If she stays too high and I have to give her more insulin, that's just another night that I don't sleep. In all, almost every moment of the day is lived in uncertainty.

Last night I just couldn't be strong anymore. I tried but when Kelly and I went to bed, I layed there taking deep breaths, trying in vain to expel my stress but I couldn't so I pulled Kelly close to me and when her skin touched mine I began to cry.

In an instant the tears were crashing down my face and I could hear them splashing on the pillow, I thought to myself, "I haven't cried like this about diabetes since Arden was diagnosed". When it finally stopped, I had an overwhelming urge to speak outloud the only thought that remained in my head but it felt stupid to say, childish even. I did finally say the words to Kelly even though they felt like a complete waste of breath...

"I don't want her to have this anymore".

Kelly and I spoke about stuff too private for even my transparent blogger heart to share and then I pulled myself back together, snuck into Arden's room and took a look at her CGM - I was strangely refreshed.

This morning while I was making Arden breakfast she started to sing out of the clear blue. I swear to you that I'm not making this up or embelishing in any way.

Arden started to sing 'Lean on Me'...

I'm crying now just thinking about it. I know that we are going to be okay and I wanted to share this with you so that you might consider a good cry next time there's "a load you need to bear that you can't carry".

She sang 'Lean on Me' having no idea of what transpired the evening before. No kidding, huh? Pretty great...

Follow @ArdensDay  

Do you want to take that off

Arden’s school pictures arrived yesterday and I immediately noticed that she had her CGM on in the photo. I started a conversation about it so I could commend her but as it turns out, she doesn’t need my pat on the back... She told me that as she waited in line for her turn to smile she was asked if, she’d like to take her DexCom 7+ off for the photo. 

Arden declined!

If you look closely you can see that Arden wears her DexCom receiver in a Spibelt around her waist. She has many patterns and colors, on this day she was wearing a black pouch with multicolored peace signs.

I can’t tell you how proud I am of Arden for not wanting to hide her Continuous Glucose Monitor. Arden has diabetes and she doesn’t care who knows - so proud of her! Arden’s school pictures arrived yesterday and I immediately noticed that she had her CGM on in the photo. I started a conversation about it so I could commend her but as it turns out, she doesn’t need my pat on the back... She told me that as she waited in line for her turn to smile she was asked if, she’d like to take her DexCom 7+ off for the photo. 

Arden declined!

If you look closely you can see that Arden wears her DexCom receiver in a Spibelt around her waist. She has many patterns and colors, on this day she was wearing a black pouch with multicolored peace signs.

I can’t tell you how proud I am of Arden for not wanting to hide her Continuous Glucose Monitor. Arden has diabetes and she doesn’t care who knows - so proud of her!

Think about your DexCom

Have you every looked down at your DexCom and thought, “I wish this thing did ___________”.

Well I have and I wrote a blog about it. That blog post created a way for me to get my wishes into the back office at DexCom.

I wrote recently about an insulin switch that we made (Novolg to Apidra) and in that post I challenged myself and the reader to not become complacent with the ways and tools that we use to manage our children’s type I. I took my own advice and made an incremental advancement in Arden’s care and the results were totally worth the effort.

I don’t want to stop at that...  So in regards to the Dex, maybe we start with making some thoughtful suggestions to the good folks at DexCom about what features would assist us in taking better care of our kids (adults using Dex are welcome to join in as well).

Please leave your suggestions as a comment or send me an email.  I’ll compile everyones thoughts and get them into the right hands. Maybe together we can help ourselves instead of waiting and wishing and dreaming that someone will help us.

I hope you take a minute to lend your voice! Please know that your thoughts will definitely end up on the desk of the right person. Include your name and website (if you have) so that I can properly give credit to each of your ideas. 

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The following are archived comments from this post. You can post new comments below.

Scott

Just got a great email full of ideas, keep them coming!

Friday, February 18, 2011 - 12:43 PM

Sarah

I would love to be able to adjust the pitch of the high and low alert. To me, it needs to be reversed because (in my opinion) a low is an immediate danger. Sometimes the alert as is sounds muffled and I don't always hear it. The high alert always gets my attention, if not scaring the pants off of me.

Also, I wish they had a screen to show average bg's like a meter does. 7, 14, 30 & 60 day averages. I hate having to plug it up and download just to know.

Friday, February 18, 2011 - 04:39 PM

Bennet

I think Dex and all other D devices should speak a common data language. That data belongs to the patient not the tech company and should be in standard formats that facilitate our care not their proprietary business model. It should speak with data analysis tools on the desk top or mobile device of our choosing and facilitate combining pump delivery info, meter info and wizard info entered into any device,

Saturday, February 19, 2011 - 12:25 PM

Nates Mom

I couldnt agree more with Sarah on the Low alerts.  My son Nate has had the Dexcom for three months, and I have a baby monitor sitting practically on top of it at night to ensure I can hear the vibrate and slight beep when he is going low.  I also cannot understand why it doesnt have a better range?  My company sells RF remotes that can signal through 3-storys... Dexcom only 5 feet?  An RF repeater addition would be nice...
Love it otherwise.  A little flakey at times, but cannot imagine life without it!

Tuesday, June 7, 2011 - 01:16 PM

I have a few thoughts

Dear DexCom makers,

At some point while I’m coming up my driveway my iPhone connects with my home Wi-Fi. At that moment I could stream content from my phone to any computer or television in my house. Pretty cool I say but you know what would be even cooler?

Being able to link Arden’s DexCom CGM to my wireless...

I’m just an idea man but please stick with me.  

If the transmitter and the receiver ‘spoke’ to my 

Wi-Fi. There would be no need to wear the receiver while inside. Not to mention no need to sleep with the receiver! Have you ever slept with a hunk of plastic next to you? Not fun.  

And the main reason to make this improvement. You could design and sell simple wireless base stations that would alert the house of blood glucose movement. This would be a fine revenue stream for you. Imagine, alarm clocks, wall clocks, base stations, that flash, beep or both. 

Your product is fantastic and in most controlled situations it’s perfect. However, it falls short when Arden leaves the room, the floor or goes to bed. At this point Arden has been wearing the Dex for so long that she sometimes doesn’t hear or feel it when it alerts her.

Imagine I’m in the kitchen making dinner while Arden is upstairs in her room, her blood glucose is falling and she either ignores, doesn’t feel it - whatever. Suddenly my wall clock gently changes color like a tastefully designed BatSignal or Ohhh yes, better yet the DexCom app on my iPhone sends me a push notification.  Doesn’t that sound nice?

Here is a real world situation that happens all of the time.  I, many times don’t hear the Dex beep during the night (you know because I’m sleeping). It’s too far from my room and the receiver doesn’t come close to waking Arden.  She has woken many mornings with a low BG because no one heard the beeping. Do you know what would have woken me up, my new Wi-Fi enabled DexCom alarm clock. Honestly, my just imagined DexCom iPhone app would have woken me too as my iPhone docks in an alarm clock that magnifies it’s audio output. While we’re building the app let’s make a version that shows the line graph and outputs the reports... might as well get all we can out of the app consultant that you’ll need to contract. I’d like an iPad app too if you don’t mind... thanks!

How about a Wi-Fi enabled mattress vibrator. What if the clocks in the house switched to the Dex readout during alarms... how damn great would that be! These don’t need to be what ifs and two seconds of market research would tell you that there is market interest. 

Okay, that’s all of the consulting you’re getting out of me for free... Get on the stick and get these improvements to us asap. 

Does anyone else have a suggestion? Please leave a comment on the newly created post made just for your thoughts!

UPDATE: I was asked to be vague and so I will be. Let’s just say that the thoughts that I’ve had about how to make improvements to the DexCom are already in different stages of discussion within the company, as well as across the entire industry.

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The following are archived comments from this post. You can post new comments below.

Adam

Better yet, on top of Wi-fi, why not do what Amazon does with the Kindle.  In the price of the Dexcom include 3G access.  That way, my son's Dexcom could alert me to a BG change at home, work or where ever even if he's at school or a friend's house!

Our son is 7 and will soon be wanting to go on sleepovers.  This is going to be difficult for us because Dexcom rarely wakes him.  With 3G connectivity, no problem.  The App you mentioned can now alert me at my house.  As long as he's in range of a tower, we're set.

Thursday, February 17, 2011 - 11:58 AM

Scott

Genius sir, c'mon everyone... I see you on Twitter. Comment and then I'll get this to DexCom. I've been known to make a persuasive argument here and there...

Thursday, February 17, 2011 - 12:06 PM

Emily B

Love these ideas.  LOOOOOVVVVE the sleepover thought.

Friday, February 18, 2011 - 11:37 AM

Stacey D.

These are excellent ideas!  And since I am a new iPhone owner, I am totally for the push notifications notion!!  Everything is becoming a part of wifi/3G technology and diabetes devices shouldn't be excluded from that concept.

Friday, February 18, 2011 - 12:16 PM

Sarah

To be honest, while all this is great, I just want them to hurry the *ell up and integrate with my Animas pump (or Arden's PDM for that matter) so I don't have two devices to worry about.

Friday, February 18, 2011 - 04:49 PM

Doug

my son has been using the Dexcom 7 for about a year and a half now... I requested these same things about a month after we started...  the range on the cgm is a real limitation... and as the father of a young son who isn't awakened by the cgm beeps or vibrations, we have a baby monitor set up in his room so we can monitor the alarms from our bedroom... would be really nice to be able to interact with the cgm remotely (clear alarms, check current bg, see the trend graph...)... sometimes we will still have to walk upstairs to his room and do a blood test just to make sure the cgm is giving accurate info... but that would still save us a lot of potential sleep time.   My original suggestion was some sort of 'docking station' for the cgm at night... could recharge and allow 'remote' access/control of the cgm through the docking station using weg/wifi/bluetooth/ or even a wired connection to another cgm control in another room...  even better would be if you could do away with the cgm receiver altogether and just use a smart phone for all of it... one less device for the child to have to drag around...

Thursday, May 26, 2011 - 11:19 AM

The fall

Last night around 7 pm Arden experienced a spike from dinner that required a bolus.  Even though I asked myself if cutting the amount of insulin by a third might not be a good idea (since we were so close to bed time)... we were covering a big number and all the math added up so I gave the bolus.  Two hours later Arden was getting into bed and we were chatting about the weekend.  

I checked her CGM and she was 90 with a diagonal arrow down.  I tested, shut off her basal insulin and got her a glucose tablet.  Her BG got as low as 75 at one point but I was able to control things with some more basal magic and I’m happy to report that she awoke for school today at 133 and had a nice steady line all night.

But that’s not what got me blogging today...

What got my to the blog machine today is this.  Arden had just finished the glucose tablet and I was touching her hair, trying to help her to sleep.  In a quiet moment she said in a whisper, “I can feel the fall”.  When I asked her what she meant (though I knew and just wanted to hear it in her words) she said, “I can feel the insulin making me fall...” I asked, “where on your body do you feel it?”.  “In my head, I can feel the insulin in my head make me fall”.

I don’t have any words of wisdom and at the moment I can’t see any lessons to take from this.  I just wanted to share that Arden can, “feel the fall” and that it makes me sad.  Even though I knew this already and I use those words when talking to the school nurse at least weekly and even though it helps her to avoid lows... to hear Arden say it made me sad.  I’m not bummed out, just sharing. I hope everyone has a great day!  

One good thing about all of this is that there isn’t much time to look back... you just have to keep moving forward.  huh, look at that, there was a lesson in this.  I’ll be damn.

**

The following are archived comments from this post. You can post new comments below.

Leighann of D-Mom Blog

Love the photo!

In our "6 Things" video Q talks about how she feels when she is low, like she could flop down.

Sometimes she tells me she feels low and when I check her she isn't. Surely it's the insulin kicking in and she's on her way down. Sometimes she's said she's low and he number is fine and we recheck her in a while and she has dropped dramatically. Maybe she can feel it way before it's reflected in her numbers. (And this is where I can see that having a CGM would be helpful.)

I guess the good thing to take away from it (if there is ever a "good thing") is that Arden has hypo awareness, some kids don't.

Thank you for sharing.

Monday, January 10, 2011 - 12:14 PM

Scott

The Christmas hamster was a big hit!

Arden totally feels the drop.  

You're very welcome, transparency is the key to advocacy.  Thank you for yours as well!

Monday, January 10, 2011 - 09:13 PM