Our Bionic Pancreas Summer

I said:

A person with Type 1 Diabetes makes hundreds of decisions a day about their diabetes care. Decision that will directly impact how the rest of their day will go, what their A1C will look like at their next endo visit, and whether or not they'll end up with long term complications from their diabetes.  For five days this July at our very own Clara Barton Camp Caitlin didn't have to make any of those decisions. 288 times a day, her Bionic Pancreas did it for her.  

I first learned of The Bionic Pancreas project when Ed Damiano and his team trialed it at CBC last summer.  I was a immediately intrigued. Caitlin and I discussed it and she was eager to try it if the opportunity ever presented itself. Shortly after, we found out they'd be doing the same trial in 2014 on campers aged 6-11. She expressed interest right away and then went back and forth through the winter on whether or not it would take away from her camp experience.

When we were contacted in the Spring she was ready to commit. The screening went smoothly and we were placed on a backup list. The program had quickly filled up with families from all over the country. People were traveling from hundreds, even thousands, of miles away to our little camp to participate in this study.  Caitlin was ready to step in if another child was unable or unwilling to participate. We were ecstatic to learn shortly before her session that she was in, she was going bionic for five days!

We arrived at camp early our first day and met with the Bionic Pancreas team and the other families participating. It was a charged environment!  Two groups of campers would be participating. The first group would wear the Bionic Pancreas for five days and revert to usual care for the rest of their camp session.  The second group would begin with usual care and switch to Bionic Pancreas for the remainder of camp. Caitlin was chosen for group 1 and the preparations began.  She was given two infusion sets and two T-Slim pumps, one for insulin and one for glucagon. A Dexcom sensor was popped in and she was ready to go.  Her Pancreas, an iPhone 4s with a Dexcom G4 receiver mounted to the back, hung around her waist in a spibelt.  It was a lot of gear for a skinny little girl to carry!

The countdown began. 10, 9, 8.....  Go Bionic!!!  And it was all out of our hands. Beds were made up, cabins organized, kisses and hugs exchanged. And I left my little girl in the hands of a roomful of doctors and scientists staring at data on screens and with gadgets hanging around her waist responsible for her health and well-being for the next five days.

Pickup could not come soon enough. Twelve days with no idea of how it was going was tough to take.  In the end she didn't love the experience but is happy she did it.  It got to be a bit much wearing all the gear and responding to the alarms from two pumps and a CGM. She missed out on some camp activities for the five days she wore it which she decided was the worst part of the study. The results speak for themselves. With Bionic Pancreas her potential A1C was lowered from the mid-eights to the mid-sixes. They still have a ways to go with integration but they have a solid plan in place and with the proper funding hope to have a product to market by 2017. Just in time for Ed Damiano's T1D son to go off to college.  Now that's what I call commitment to a cause!

She said:

I’ve had diabetes for almost two years. It probably seems like a short time, but I can barely remember life without diabetes. I’ve been coming to CBC for two years. This summer I took part in The Bionic Pancreas (biopanci) Study. The biopanci didn't make it seem like I didn't have diabetes, but it definitely made it seem like I had less diabetes. I still had to carb count, and check my blood sugar, but that’s the simple stuff.

All you had to do to bolus was… I would wait for the biopanci nurse to check my blood sugar. calibrate my Dexcom, carb count, and see if how many carbs I’m having is a usual size meal for me.  The way this works is that you teach biopanci what a usual size meal is for you then you tell it if you're having a usual size meal or something bigger or smaller. 

This machine is magic — even though Ed Domiano, the creator of the biopanci, told us personally that he doesn’t believe in magic — it is. I never had one high blood sugar, and only two low blood sugars that were 70 or 80. The biopanci remembers if you had more or less carbs yesterday, and if you had a higher amount of carbs in the range of carbs in usual meal, it will give you more insulin for the next day. Same with less carbs. 

I had a couple times where I really didn’t like the biopanci, only because all of the stuff I had to carry around. But don’t worry, when they make the final product, it will be one machine, not much bigger than a normal pump. Also, you can only disconnect from the biopanci for a half hour at a time, so I missed some of my swim time, and water day time. Lastly, since it was a study, the pumps were beeping a lot.

Overall, there were things I did and didn’t like about biopanci but I know the things I didn't like will be changed. I would definitely get the biopanci once it’s got all the kinks worked out, and in one machine. This was my experience with the biopanci. It was a good experience.