Candy Hearts Blog

It's a sweet adventure full of gluten free goodies!

Candy Hearts Blog - It's a sweet adventure full of gluten free goodies!

Going Bionic: The Dropoff

I must have gone through her luggage three times that morning to make sure nothing had been lost since I packed (and re-packed) her bags a over a week earlier.

It was time to drop off our girls at diabetes camp for 2 weeks. Beyond that, it was also time to get them hooked up and ready to start participating in the 2014 Bionic Pancreas Summer Camp Study. Misty and I embarked on this journey after hearing Ed Damiano present at the CWD Focus on Technology Conference 8 months earlier. The nervous energy felt surreal after so many months of preparing, planning, and coordinating to make this trip a reality.

Bionic Pancreases

A table full of Bionic Pancreases

As soon as we arrived, there was paperwork to take care of, then a physical exam, and a meeting with the camp medical staff to discuss basal rates and bolus times and all the other stuff necessary to keep these kids alive.

Height and weight, blood pressure, temperature…then another weight check to make *ABSOLUTELY* sure (because the Bionic Pancreas delivers insulin and glucagon based on a person’s weight). A Dexcom insertion, a new meter, new strips, and a Spibelt

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Then we had two hours to kill while waiting for the initial Dexcom calibration, but there was still plenty to do. Find the cabin, pick a bunk, unpack, lunch in the dining hall, swim test, visit the camp store, picture, activity selection…it was enough to keep us busy for 2 hours for sure!

Words really can’t accurately describe how beautiful camp is. Not only the accommodations, but the experience of being surrounded by so many adults with insulin pumps. The people in the dining hall, the people doing the swim test, the medical team. There were pumps everywhere.

Yes, camp is BEAUTIFUL.

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And then it was time to give the study an official start time. Sugar was assigned to the second group of participants, which means she will wear the entire Bionic Pancreas system for five days, starting next Sunday. Ally, however, was assigned to the first group, which means she will wear the entire system for the first five days of camp.

Watching that countdown, knowing each of those girls were about to be completely controlled by a closed loop system was incredibly emotional. I’ll expand on those thoughts and feelings later, but Misty talks about her experience in that moment HERE.

When it was time to say good-bye, part of my heart stood still.

I know she will be a little more grown-up with more confidence, and more independence under her belt when I return to pick her up. And, while I also know this is the ultimate goal when raising each of my children, I couldn’t stop the tears from falling as I walked away.

In our last minute together, I held her close, felt her soft skin on my cheek, and nuzzled my face in her hair.

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Good-bye, sweet girl.

I am so proud of you.

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I’ll see you in two weeks.

This post is part of a series documenting Sugar’s experience in the 2014 Bionic Pancreas Summer Camp Study.

Further Reading:

Going BIONIC
Addy and Ally: A BIONIC Friendship

See more pictures HERE.

A Bionic Friendship: Introducing Addy and Ally

1

Addy was diagnosed with Type 1 Diabetes on July 25, 2005.

Ally was diagnosed with Type 1 Diabetes on February 10, 2009.

They live several states apart, and their paths probably wouldn’t have ever crossed if their mothers, Wendy and Misty, hadn’t been active bloggers in the Diabetes Online Community. Before Facebook and Twitter began defining the landscape of social media, Wendy and Misty were seeking online support by sharing their personal journeys of raising a child with diabetes through their online journals.

2

In 2010, Ally sent Addy a special little book she made about her “diabetes friends”…

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Since then, the girls have kept in touch, supporting each other via e-mail…

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And Skype…

5

And, most recently, text messaging (YIKES!)…

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Addy and Ally (and their families) met for the first time in person at the 2012 CWD Friends for Life Conference

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Then again in 2013

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So, perhaps this IS a story about two girls…but it’s also a story about two families…

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Two families who have three little girls each, the oldest of whom has Type 1 Diabetes.

Two families who long for the day their girls — and every person with T1D — will experience life without the constant “basal thinking” that is necessary to survive from one glucose check to the next.

Two families who are bonded through this journey, and whose lives have been forever changed because of Type 1 Diabetes.

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This post is part of a series of updates documenting Addy and Ally’s experiences as part of a clinical trial for the Bionic Pancreas in the Summer of 2014.
Postscsript – I don’t generally use my daughter’s real name here, on the ol’ bloggy blog.
Each of my girls actually have their own cutsie nicknames, but I’m making an exception today, because putting the names “Addy and Ally” together is too sweet {pun intended} not to!
I know.
Stop laughing.
I’m really not that sappy all the time.

Going Bionic

July 25, 2014 will mark the 9th anniversary of Sugar’s diagnosis with Type 1 Diabetes.

Nine years of finger pokes, shots, pump sites, and managing insulin for every speck of carbohydrate she eats or drinks. Nine years of carefree childhood balanced with the burden of chronic disease. Nine years of trying to learn everything there is to know about an all-consuming diagnosis, while simultaneously fostering independence in constant preparation for the day she takes control of her own care. Nine years of overnight glucose checks, A1c’s, lab draws, quarterly office visits, 504 meetings, school training, and advocacy.

If you had told me, on July 25, 2005, that nine years later, the child fighting for her life in that PICU bed would embark on an experience to radically alter the course of managing Type 1 Diabetes forever…well, I would have just stared at you, blinking confused as if you were speaking a foreign language to me. Then I would have started crying (again).

But it’s happening.

Sugar has officially been placed as one of 2 eleven-year-old girls who will wear the Bionic Pancreas for five days as part of a clinical study at diabetes camp. Even better, the other eleven-year-old girl is one of her diaBFF’s, Ally! (Stay tuned — I’ll be sharing the story of their friendship coming up next!)

What is a Bionic Pancreas, you ask?

Engineers from Boston University have developed a closed-loop bionic pancreas system that uses continuous glucose monitoring along with subcutaneous delivery of both rapid-acting insulin (to lower blood glucose) and glucagon (to raise blood glucose) as directed by a computer algorithm. The bionic pancreas automatically makes a new decision about insulin and glucagon dosing every five minutes.

a and a going bionic

It’s five days of not having to think about how to respond to her blood sugar. It’s five days of running carelessly with the wind without the fear of hypoglycemia. It’s five days of enjoying food without calculating the number of carbohydrates on her plate. It’s five days of being surrounded by other children who face the same challenges, and five days of  feeling “normal”. It’s five days of going to sleep without anxiety about the “what ifs“, and five days of waking up with a glucose level in range, ready to start a new day.

It’s five days of a life Sugar doesn’t remember, and five days of a glimpse inside her future at the same time.

(P.S. I’ll be documenting our journey as much as I can, so be sure to stop by again soon! Here’s the Candy Hearts Blog Facebook Page, where I’ll be posting links for regular updates.)

The Perfect Storm

snow

“Ladies and Gentlemen, our gate is currently occupied. Please remain in your seats as we work to find a solution to this situation…”

I didn’t really hear anything after that.

The snow was falling in Chicago, and flights were delayed from every angle. Mr. Rose and I were travelling home after a full 4 days away from home, and the girls were in the care of my mother for the 1st time. Sugar’s numbers had been hovering in the 200’s-300’s, and I was anxious to hear the effects of her most recent correction.

I felt fidgety in my seat…anxious…there was a pit in my stomach, but I couldn’t really identify the reason. My phone was tucked away in the overhead bin, so I nudged Mr. Rose and asked him to call and check in.

You know those annoying people who start talking on their cell phones before anyone can get off the plane?

Yeah. THEM.

We had become those people, because I had no idea how long we’d be waiting for a gate, and the past eight years have taught me to rule out diabetes FIRST when it comes to that pit in my stomach.

“Hi. We’re on the ramp in Chicago, and we aren’t sure when we’ll be able to get off the plane”…”Hmmm.”…”WHAT? FOUR NINETEEN?”…”Ok. She needs a site change, and we’d better swap out her insulin too.”…”Well, first have her take off her pump and give it to you…”

I had already walked my mom through a site change, so I knew she could do that part without much drama. I had filled the pump with extra insulin before we left in hopes that we wouldn’t find ourselves in a situation like this.  In other words, she had no idea how to actually get insulin into the pump. I left a list of phone numbers, including fellow friend and dMama, Tracy. I also have a neighbor, Heather, who has learned how to put in sites and fill the pump, so I figured it was good enough to have back up if necessary…but I was *REALLY* counting on the 150 units I filled to last the full four days.

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Heather putting in a pump site for the first time.

And then Sugar’s BG was 419 after lots of 200’s and 300’s.

Apparently not.

I sat anxiously listening to Mr. Rose giving instructions…and, when I couldn’t take it any longer, I took the phone from him. I could tell my mom was nervous about the numbers. Sugar was anxious knowing the situation warranted intervention, but her mom and dad were on a snowy ramp in a different time zone. The other two girls were bickering in the background, and I knew all too well the tornado my mother was sitting in the middle of. This scene has played out at least a hundred times at our house…except, this time…well…THIS TIME I wasn’t there to fix it.

My little girl needed me and I wasn’t there. 

I felt a little lightheaded and clammy. I knew panic could easily take over…not so much because we wouldn’t be able to get the site changed and pump filled, but because I knew there was a 3.5 hour flight still ahead, and both Mr. Rose and I would be completely inaccessible. I knew things could go downhill fast if our fix didn’t fix it…but I’d be somewhere over the United States, completely helpless. This truth made me sick.

Mr. Rose must have seen the color draining from my face as the plane pulled up to the gate. By then, everyone around us knew something serious was going on with one of our children, and graciously agreed to let me scurry off first. (Thank you, Strangers!) Meanwhile, Mr. Rose got our carry on bags, and used my phone to call Heather to see if she could go to the house and help.

There was some ruckus getting off the plane — like hitting my head and seeing stars while trying to get into the aisle. It was really loud once I made it inside the airport, but between Heather, Sugar, my mom, and me we got the job done. I felt a wave of relief, said good-bye, and started investigating the status of our flight.

We were only about an hour behind schedule when we made it back to Phoenix. That’s when I turned on my phone to see this…

Screenshot_2013-12-18-09-17-17

Wait. What?

Tracy was called? A shot? Temp basal?

It happened.

The site change didn’t work. Or the insulin was bad (which is what I suspect happened after going through the fridge and finding a vial the school had opened back in August that I brought home and forgot to throw away. I think my mother unknowingly used this insulin with the site change we had done in Chicago. Um. My bad.). Any number of variables, or combination of variables, may have reared their ugly heads, but the bottom line is that things went from bad to worse AND. I. WASN’T THERE.

I called Tracy immediately, and she filled me in. At that point her BG was *DOWN* to 514mg/dL and ketones were down to moderate from large.

When Sugar’s numbers weren’t dropping, my mom called her…one quick evaluation of the situation, and she jumped into action.

New vial of insulin. Another site change. A shot. Fluids.

Heather and my mom followed her directions, and got the job done.

Tracy knew my mom had to get ready for an early flight home the next morning, and could tell everyone was mentally exhausted from hours upon hours of trouble shooting. She thought it might make it easier if Heather took Sugar to her house so my mom could tend to the other two kiddos, and take care of getting packed for her trip home.

By the time I got to Sugar, her BG was 355.

The crisis was over.

They did it (without us), and I couldn’t be more proud of them!

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PS — I REALLY want to tell you all about our awesome pals Misty and Keith, and the wonderful time we had at the 2013 Friends For Life Focus on Technology Conference in Cincinnati. I want to tell you about the tears I cried while listening to Edward Damiano talk about the Bionic Pancreas (P.S. — don’t miss Misty’s awesome recap HERE). And I want to tell you how nice it was to get away with my man for a few days…but…I’m a busy mom who works four evenings a week and Christmas is a week away. So like my FB page, and then you’ll get an update in your feed whenever I get around to it. Because I know you’re busy too!

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