Evie ran in a color-splashed fun run yesterday with some friends who sent me this picture, which I love. Besides the expression of pure joy on her face, I am pleased to see that her pump site survived the run! Although it is even more colorful than usual. Good call on the IV3000, Evie.
Click for the We, The Undersigned – Tuesday 5/14 Link List
“Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change?”
Re: The MiniMed Paradigm® Revel™ Insulin Pump
Petition: We, the undersigned (me), feel that the MiniMed Paradigm® Revel™ Insulin Pump should be programmed to, at the very least, flash brilliantly and emit a siren sound when the pump reservoir completely runs out of insulin.
Yes, I know there is an alarm that tells me when the reservoir is low, and I know I have control over at what remaining volume the alarm sounds.
But I have lots going on. And two insulin pumps to keep track of. And one child who rarely even tells me when her pump alarms. And while the regular “boop beep boop” sound is fine to remind me that the reservoir is running low, there really should be a different kind of alarm for when the insulin level finally reaches “–.–” (empty).
Because there’s not a different alarm, there’s no way to know when the pump runs dry, and then its a guessing game to determine how much insulin they’ve actually received. (“How long has your pump been alarming like this??? It’s completely empty!!!“)
I need something that will get my attention.
Like flashing LED lights and a horn sound. Which would also serve as a deterrent for my forgetful daughter. Can you imagine having that happen in the lunchroom at school? She’d never forget again!
I love my kids’ pumps. They are fabulous and I have no other issues with them besides this. So please, Medtronic, help out a busy mom and build this flashing-light-loud-and-insistent-can’t-miss-it-alarm feature into your future models. Is that too much to ask?
I’ve had such fun running with my kids this spring!
Will and Luke both surprised and humbled me by finishing a 5K fun run with me a few weeks ago, the longest distance either of them has run before outside of soccer practice. They enjoyed the attention they got by being the two youngest runners, and I was insanely proud of them!
I knew beforehand that Will could run the distance, but I wasn’t sure about Luke. In fact, I hadn’t even planned to have him run, but he stepped up for his bib number without a second thought. I tucked the business parts of his blood sugar meter into his SPIbelt (which is how he wears his insulin pump), along with some glucose gel and meter strips, and we took off!
Both boys ran about a mile before we had to slow to a walk for a bit. We all stopped again after the second mile for a quick blood sugar check (a little elevated but not worrisome), but Will took off on his own after that. Luke started to struggle a little in the third mile, but always managed to turn on the heat when someone was cheering him on or there was a photographer taking his picture!
Will finished his run in just over 30 minutes; Luke and I crossed the finish line after about 45 minutes. We checked his blood sugar one more time and then bolused for his post-run snack. There’s always a worry during exercise that Luke’s body will chew through his blood glucose too fast and he’ll have a low. Having the tools with us to check for and treat a low blood sugar is non-negotiable!
It was not only amazing to see my two small boys run a distance race, but to witness the pride and accomplishment that they felt within themselves at the finish line! And as icing on the cake, they won 1st and 2nd place in their age group (which I’m pretty sure was created on the spot).
It’s so important to me that all three of my kids feel confidence in their physicality, whether they happen to have diabetes (Evie and Luke) or they don’t (Will). Running a distance race was a perfect way for them to safely feel what it’s like to push themselves towards a physical goal, and to learn that they can do more than they can imagine! This is a lesson that I learned late in life, and it pleases me to no end to see them learning how to enjoy being active now, when it can become a lifelong habit.
These words were uttered during breakfast this morning, about five minutes before we were set to leave for school. Five. Minutes.
Evie is fairly self-sufficient with her insulin pump. Self-sufficient in that she knows how to perform the operations herself, not so self-sufficient that she notices and acknowledges things like low-reservoir and missed-bolus alarms. This happens a lot. Luckily, we’re pretty quick with the set changes.
Ok. FIve minutes. I can do this. She has to finish eating anyways.
But then, Evie made an impassioned plea to save her set change for after her pre-birthday-party shower this afternoon. Could she do an injection bolus for breakfast and lunch and save the rest of her pump insulin for her basal needs for the day? After my shower? Please?
Oh, sweet girl.
I take for granted the ability to simply take a shower without having a medical device adhered to my body. If you’re a pump wearer, it must feel really, really great to be able to soap up without worrying about scrubbing your infusion set off in the process. To have your body completely free of adhesive tape and invasive plastic cannulas, if only for the time it takes for a good, long shower.
So we’re doing a combination of injections and pumping today to get her through to that highly-anticipated free shower. It’s sure to confuse the Bolus Wizard–the name given to the complicated algorithms the pump uses to calculate dosages–but that’s what our backup brainpower is for.
If that’s the normalcy she is craving today, then we’ll do the extra work to help her find it.
A friend and I were talking the other day–brainstorming, really–about the gap in technology that exists for diabetes testing and pump therapy, verses, well, anything else electronic. Sure, there’s a touch-screen insulin pump that will be available at some point, but you still have to connect that fancy little box up to a computer with a good old-fashioned USB cable. Where’s the wireless capability?
Why can my phone sync wirelessly with every single other device I own, but I still have to manually download data from our meters and pumps? Data that would be a lot more useful in real-time rather than a month later, or however often I can squeak out enough time to dig out my USB transmitter, log in to Medtronic.com (what were those passwords again?) and lasso my kids so they can stand right next to the computer.
And forget collecting glucometer data…our meters don’t come with the cord connector, you have to order that separately. (To be fair, I am aware that Medtronic’s own One-Touch Ultra meter relays BG numbers to the Medtronic pump for future data collection, but we’ve chosen not to use that meter–just personal preference.)
We came up with some great ideas for practical and elegant technology we’d love to use. And then I ran across this video this morning and remembered some of the realities of Health Care, and more specifically, of Health Insurance.
Insurance companies don’t usually like to pay for New and Different. I’ve lost several hours of my life on the phone with the insurance company, trying to win even minimal coverage of the test strips for a micro-sample meter system whose technology is already over 4 years old. And I’ve had to go through it every time we’ve ordered new supplies.
It’s frustrating. Just as I’m sure it was frustrating for the young lady in this video to find a new technology that would SIMPLIFY (and don’t we T1D families deserve some simplification?) her testing and data collection, only to find it financially out-of-the-stratosphere-impossible.
In the near future I hope to see a couple of new developments on the diabetes front:
- A system that incorporates testing technology with Smartphone communication. Maybe even one that also communicates with a pump. And someday, a complete closed loop CGM-pump system ( iDiabetes? Apple, I would be a devoted customer for LIFE.)
- Insurance coverage for diabetes that actually keeps up with the rapidly developing technology and tools of Type 1 management.
That’s it for now.