Alarm Clocks, Finger Sticks and Fear

Yesterday I got my new iPhone in the mail and today I got Medium’s insulin pump, continuous glucose monitor (CGM) and My Sentry in the mail.  And I’m not sure which I am more excited about!  Ok, I do know.  I am much more excited about Medium’s pump (although the iPhone is going to help me manage his diabetes, too with apps that I couldn’t get on my android phone).  There are basically three front runners in the world of insulin pumps.  The Medtronic MiniMed, the Animas Ping, and the OmniPod.  We eliminated the OmniPod right away because we felt like it would get knocked off too easily with Medium being so active.  So we met with representatives from both Medtronic and Animas.  Both of the reps we met with were very nice and knowledgeable about their products and there were features on each that we really liked.  But ultimately we decided on the Medtronic, mostly because we really wanted the continuous glucose monitor which, if you choose to get it, integrates with the pump.  Animas doesn’t have the CGM, instead it is compatible with the Dexcom CGM, but then Medium would have 2 devices to keep track of, and the Dexcom is not FDA approved for use with kids.  We have heard that even though it is not FDA approved for kids, sometimes you can get your doctor to prescribe it and your insurance to pay for it, but that seemed like a headache waiting to happen.  And having worked in the medical field for 10 years now, I trust Medtronic as DME (durable medical equipment) company.  But probably the biggest reason that we went with the Medtronic is the “My Sentry” device, or as I am calling it the “My Savior” device.  I am trying really hard not to get overly excited and get my expectations set pie-high in the sky, because it may not work the way it is supposed to.  And it is so new (it came out the week before Medium was diagnosed) that I can’ t find any customer reviews online.  But the concept behind it is AMAZING!  http://www.medtronicdiabetes.net/products/mysentry  Basically how it works is this. Medium wears his pump and CGM all the time. The My Sentry device remotely monitors his blood sugars, in real time, and then alarms on a device that we can have on our nightstand.  So when he is sleeping and his BG goes low, his pump will alarm and it will alarm on our device also.  No more setting my alarm for midnight and 3 am and then going in and poking his fingers and saying a prayer while I watch the count down on his glucometer until the number pops up.  If I wake up in the middle of the night, I can just look at the monitor and it will tell me his BG.  The CGM reports his BG every 5 minutes.  OMG! What peace of mind!  Can you imagine???

While all diabetic parents worry about long-term health effects of diabetes on their children, probably the number one worry is nighttime lows.  When you and your child are sleeping, who knows what is going on with their blood sugars and if it goes too low and he doesn’t wake up……..well, you get it.  Up until now the only choices we had were to pray and leave it in God’s hands, or get up two or three times a night and check blood sugars.  Unlike many families who have been doing this for years, we have only been doing this for two months, but I can tell you it is exhausting.  What if we just took a night off and turned off the alarms?  We would never forgive ourselves if something bad happened.  Risking your child’s life for a few hours of sleep, seems awfully selfish.  But thank God somebody is working on the technological advances in the tools that manage diabetes while others are working on a cure for the ugly disease.  Cue, My Sentry from Medtronic. My big worry is that it will not be as accurate as we want it, or need it, to be and will therefore render itself useless.  And then not only will we have spent $2000 on it (insurance doesn’t cover it) but worse, we will be back to alarm clocks, finger pokes and fear every night.

But here is the real kicker. We will have to wait and see how accurate it is, because we can’t get a straight answer from anyone at our insurance company about whether or not we have a six month waiting period for the pump and CGM to be covered.  So we had to order it and then wait for a claim to be generated and if it turns out we do have a waiting period then we will have to send it all back, or pay for it out of pocket.  So here in my front room with me sits $10,000 worth of life-saving medical devices and supplies and they have to stay in their little boxes until someone in a suit sitting in a leather chair in a corner office in a 50-story building, ten states away, says it’s now okay for my son to have an easier, less painful and more accurate delivery of his life-saving insulin. Really? I wonder if it was the suit’s son?  Make no mistake, I have made every phone call, sent every email and filed every piece of paper that I can at this point to get an answer, and I already know what my next steps are if the claim is denied.  But for now, I will have to wait to find out if My Sentry really does turn out to be My Savior.

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2 thoughts on “Alarm Clocks, Finger Sticks and Fear

  1. Angie says:

    Well said Danielle. One suggestion is to contact your Minimed rep (mine in AZ was great!) to push your insurance company. Lots of times they can get the ball rolling faster than you or your doctor can. There is really no reason for insurance to deny the claim, so JUST MAKE THE DECISION ALREADY STUPID MEDICAL REVIEWERS!!!!

    • Thanks for the tips, Angie! We might have gotten a bit of bad news/good news today. Looks like they are covering the pump but not the CGM. I just looked online at our claims. I will get on the phone tomorrow with insurance and Medtronic!

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