A Diabetes Blog to Stay Connected with Us

I'm going to use this blog to keep family, friends, and the occasional visitor up to date on how we are doing managing Grace's new diabetes diagnosis.

Monday, March 19, 2012

Greetings from Frustrating Land

Frustrating Land is nothing like Disney so don't get all excited and start making plans. Frustrating Land is the land of powerlessness with limbo as its star attraction.

Our insulin pump order is on hold. It's been on hold for almost 3 weeks now. I first began the process of ordering the pump in early February. Our pump was about to ship when a leap year software problem delayed Animas from releasing pumps to anyone. No pumps have shipped since then. I get vague messages from the company. Our reps are frustrated by the lack of info. I'm frustrated right back at them.

What is particularly frustrating is that we went with Animas specifically because of their reputation for customer service. The competing pump (made by Medtronic) is essentially the same but includes a few different features. To explain the differences would require us to descend into nerdy diabetic speak and I won't take you there. When I call Animas to get an update I get an extremely vague, "We're working on that software fix. I'm sure it will go out late this week." I've heard that two times now in the past two weeks. I have a husband in software. It's what he knows. And he knows he doesn't like the sounds of this. It's shaking our confidence in Animas.

In the meantime Grace's sugar has decided to do something fun. We've never had problems with over night high sugars or lows. Sometimes Grace will have a really active day and we check her through the night to make sure she doesn't have a low sugar. The lows are the sort term baddies. The highs, the long term baddies. We don't want those lows. Some parents of T1 kids check them round the clock. I have so much respect for them. We have not been in that situation. Until now.
Grace's sugar has started spiking in the night. Grace used to be between 120-200 when I went to bed. This is perfectly acceptable to me. but lately it's been 360, 320, 290. This is not acceptable to me. If she goes that high for too long, the ketone monster shows up. Ketones are those ugly acids that build up in your system and make you feel poopy.

Consequently, I'm waking Grace every few hours to check her sugar and give her a shot of insulin to keep things under control. A pump would make this a whole lot easier to deal with. Not the lack of sleep-you still need to check their sugar but at least you can be a stealth doser. Plug the info into the pump and off it goes. Buh-bye needles. Grace's arms are so bruised from the shots. I know the sets for the pump are no picnic. One of my T1 mom friends said today her son's bottom (where he likes to wear the IV hook up for his pump), looks like a pin cushion. There is no real "solution" in all of this that gives you 100% satisfaction. Lots of diabetes management involves negotiated victories and reluctant losses.

Ironically, Medtronic (competitor to Animas) called and left a message today wondering if they could send us a pump. I have to confess I was REALLY tempted to pick up the phone and scream YES. But I have some inquiries in the pipe line and I want to see where they take us. I tweeted about my frustration this morning and one my T1 heroes is a rep for Animas and picked up our cause. She's trying to get our questions answered for us and I'm grateful.

In the world of good news, Grace had mentioned while watching Cupcake Wars that she wants to open an allergen free, low carb cupcake bakery for kids like herself. I LOVE this idea largely because I'm pretty sure she would hire me. On a whim, I contacted our town farmer's market and they agreed for us to be a "star business" one week in the summer and we can sell "Type One Cupcakes" as a fundraiser for CHOP or the JDRF. When I told Grace this, she rushed to my cookbooks and grabbed every cupcake book she could find. She's making lists of cupcakes, allergen free ingredients, and icing concepts. She is all over this. I love doing things like this with her because it shows we're not totally powerless in all of this. Here is great example of turning a really negative two weeks into something positive as we plan for the summer.

I'm giving Animas a few days to inspire confidence in me once again. If they can't do that, I'm moving on to Medtronic. It's our endo's favorite pump and they're ready to ship me one now. If that's what I have to do to get our management back on track, then that's what I'll do. A negotiated victory or reluctant loss, I'm not sure. But at least we'd get off the limbo ride.

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