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Tuesday, December 6, 2011

Missing the in-between

We are going on day 5 without our trusty dexcom, and I have to say I'm handling it better than I had expected. After being bombarded with a constant stream of information for almost 1 1/2 years, my world has become a little dimmer. Finger pokes allow only little glimpses of what is happening in Elise's body.

I won't lie to you... It has been really hard. Especially in the middle of the night when foggy, sleep-deprived brains are trying to make decisions.

We pulled our sensor on Friday, after four days of the dex giving us the middle finger by way of the ???. On the last day, I think we got 3 full hours of actual data (not consecutive hours, mind you). Friday night to Sunday afternoon were awful due to two pod failures. I miss correcting and seeing that downward arrow to let you know that it's working.

We've had a run of bad luck with our pods... we went through 7 this weekend (not all of them made it onto Elise's body). When we'd get a working pod, we would see some beautiful numbers... although having lived with the CGM for this long, I have to wonder what's going on in the in-between.

As of now, we have no plans to put it back on anytime soon. With the addition of the pod, Elise's skin is a MESS. There is just no real estate left on her tiny body.

But I miss it. Who knew one could love a piece of technology so much?

13 comments:

  1. I think it is fun to practice how we handle not having our equipment. I do this same thing to prep for an emergency out in the woods.

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  2. Poor kid! Hope the Omni Pod situation improves for you. Are the pods malfunctioning (I have read of parents getting more than one bad pod in a box and issues with quality control); but they do take care of the problem and fix things. I am glad you are seeing good numbers and hope Elise does not have to deal with these issues again. I think you made the right decision to take a break from Dex and allow her skin to heal. I know once you get set technically, with all pods working as they should, you are going to do really well on the pump.

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  3. I've been reading a lot about pod failures on TuDiabetes lately. This was one of the main reasons I didn't go with the Omnipod. Would you consider switching over to the Revel at this point? I've personally had a great experience with my Minimed Revel. Very few site issues and while it did take me about 5 months to work out my basal rates, I have been very happy with it.

    As for the real estate issue, I feel Elise's pain! I am not using a CGM at the moment for exactly the same reason. I am a fairly petite woman and I tend to prefer using belly/lower back sites. I don't have a lot of areas to work with so I like to save my skin for my pump. I've found that I can live without the CGM...in fact, the CGM (for me) was just too overwhelming. So much data that I couldn't focus on anything else. And, those data were wrong so often that I began to not trust it.

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  4. @ mybustedpancreas - we tried the Ping, but Elise HATED the tubing. She would just try to disconnect it because it got in the way. She loves the pod, and even at 4 I figure it's her body and she has to wear it, so I'm not going to force something on her.

    But yeah, we have had a TON of failures... I thought I must be doing something wrong, but it just doesn't make sense how we'll have a run of good numbers on one pod, then as soon as we change it... BOOM... 400-city. When I remove the pod, I can't see anything wrong with it.

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  5. Thinking of you guys! Hope things start to heal up soon for Elise and you can get back into the grove again.

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  6. Just want to add to my prior post that over the past four years, I have read of short time periods where there are boxes of pods with many failing (Omnipod does replace but issue is also the site changes the child must endure). Then Omni fixes problem and there could be a whole year before you read PWDs noticing the problem again. So far, I believe I have read of this at least three times, possibly four. Does seem to be a drawback of the pod system. But people seem to love tubeless so much they will still choose to stick with the system. In the long run, they may be happy with it; just frustrating in the short term. Must be incredibly frustrating for an initial pump start. The Jewel pump has been approved by FDA, I think.... It will be flatter and smaller than Omni...also tubeless. Hope it comes to market soon so PWDs will have more tubeless options. Omni also needs to have a way to test these pods prior to insertion on the poor kids to see if the pod is functioning or not. PWDs and parents should list the numbers of the boxes with a high number of malfunctioning pods somewhere so you can trouble-shoot. It's a great system when it works. Omni needs to get their act together though. P.S. Don't think, at this point, it could possibly be user error. The insertion for Omnipod is automatic.

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  7. In insulin doesn't make it into the body, it doesn't make any difference how magnificent the pump :( It all comes down to that little cannula under the skin.

    I applaud your fortitude to stay the course. We went through a run of 3 bad sites with our pump start back in 2007, and that's all it took for me to start searching for a different solution. If we had experienced the failure rate you describe, I'm quite certain we wouldn't be pumping today. So kudos to you for hanging in there... I know how hard that is!

    Addy can't stand wearing Dexcom. The amount of adhesive really bothers her -- which is one reason I know the pod would be a disaster for her. The addition of the CGM seemed to complicate things for us since we had been managing diabetes for so long without one. We've come to a happy medium by being part-time CGM people. She wears it when I can't seem to fine tune the settings to stop a pattern. Otherwise, it's just her little pump circle site that hardly ever causes any drama :)

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  8. Well, you know I've complained about our Dexcom endlessly...I STILL wonder how all these folks get 14 days out of their sensors! We have become part-time CGM'ers as well. I use it when I'm perplexed on what is going on...and use it until it eventually give me the middle finger or a sensor failure. :) I love the idea of it, and I'm glad we have the option, but ADam is happier without lugging around that extra device.

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  9. Welcome to the fog! You'll get used to the glimpses, and I hope it will bring you a little relaxation in the end.

    I need to call you. I've needed to call you for a week. Love you!

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  10. Yikes! Pod stories are freaking me out. We're starting omnipod on the 22nd. How has insulet been? replacing these pods? telling you its your fault? just wondering what we're in for. shoot me an email if you have any tips/tricks/advice for staring up. hope things settle for you soon. mstills@frontier.net

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  11. I've been thinking of you guys. We're the same with pumping and CGM, can't find room for both with Isaac's sensitive skin. I hope things start smoothing out soon, very soon :) Take care

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  12. It totally sucks that you are having so many issues with the pod. Our first shipment was alarm heavy and it sucked having to do more pod changes than we were 'supposed' to do. And here lately we've needed to change them a bit earlier when we're at the end of a vial, but that's an easy fix...just don't use the last bit of insulin!
    Hope Elise's skin is doing better. We've been using Bean's arms just for dex (the one time we put it somewhere else was when we had crappy readings and lots of the dreaded ???) and we rotate pod sites between her tummy and legs.
    Sending you lots of hugs! Hang in there!!

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  13. Tough when both the pump and the cgm are acting up at the same time! Hope the pods start being more reliable, and - we have a pretty co-dependent relationship with our Dex. Hard not to! Hope the break goes well.

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