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

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

Bionic: The Pick Up

We made the final turn, approaching Clara Barton Camp to pick up our girls, and it felt like we were moving in slow motion. As we moved past the back of their cabin to the parking lot, we were giddy with excitement. Misty and I couldn’t seem to stop the car fast enough! We hopped out and headed straight for their door…wondering along the way if we were supposed to check in somewhere beforehand, but knowing we were on a mission to get our arms around them first and foremost.

We stood at the door for a second.

They were there, smiling with their friends – oblivious to our arrival. I whispered her name at first…then a little louder…

She looked up, met my gaze, and rushed into my arms.

We cried a little. She hugged me tighter than she has in years … and then she told me she didn’t want to go home. She told me she didn’t want to take off her “BioPanky”. She asked if we had to go right away, or if she had some time.

I explained that we had all day. It was just after 10 am and the study didn’t end until 3. With that, she took a breath and then started to pull out all her parts and pieces. “Mom, I can’t wait to show you everything. This is the brain, and this is the insulin.” She was ripping the zippers open and pulling out pumps and tubing like rabbits out of a hat.

She was a very happy camper.

A very happy, grubby camper.

bionic addy (1)

The most glorious, happy, grubby camper I had ever seen.

“I chose Seahawk colors, Mom. Of course, you knew I would, right? Daddy would be so excited about that.”

–Beep Beep–

“Are you beeping, Honey? Do we need to call someone? Should I go get one of the nurses? What do you do when it beeps…”

“Mom.” She grabbed my arm. “Relax. It beeps all the time. I just ignore it. It’s doing what it’s supposed to be doing, so I don’t worry about it.”

Those words have lingered in my mind: “It’s doing what it’s supposed to be doing, so I don’t worry about it.”

The Bionic Pancreas had kept my daughter alive – and thriving – for five days and five nights. It was doing what it was supposed to be doing, and she wasn’t worried about her diabetes.

I don’t know if there has ever been a day in the past nine years that she could say she wasn’t worried about it — or, maybe not “worried” per se — but at least not THINKING about it.

Ignoring it.

Living life apart from it.

And, yet, there she was. Standing right before me, beeping without a care in the world about what her number was.

Her bunk was a mess, so we cleaned up that disaster. I made her change her shirt and brush her hair.

bionic belt (1)

(Once a mother, always I mother, I guess.)

Then it was time for a BG check and lunch.

bionicaction

She didn’t have to count exact carbs, but she did have to tell the device if she wanted a “smaller than usual”, “usual”, or “larger than usual” meal. Those definitions are individualized, and based on predetermined carb ranges the user enters into the device while setting it up. For Sugar, a “larger than usual meal” meant 80-100 carbs.

Off to the dining hall for lunch — she didn’t finish her cookie, but wanted a few more nachos, and then she wasn’t sure about this or that. Honestly, I have no idea how many carbs she actually ate between her excitement and coordinating with Ally to show us some of their camp songs/cheers. She just sat down, clapped her hands, beat the table, and ate a few bites of lunch in between. If she wanted more, she got more. When she was finished with something, she was finished. Neither of us were keeping a carb tally. It all seemed so…

Normal.

After lunch, most of the girls who weren’t in the study were gone. Sugar was trying to catch the few who were left to say good-bye and hug as many friends as she could, before eventually finding her way to the GaGa Pit

bionic gaga

Addy, Ally, and Elise…the final three girls left in the game!

I don’t even know how many games of this GaGa thing she played, but she loved it — as did all the other campers!!! Apparently GaGa is a popular game…who knew?!?!

What I do know, however, is that she played GaGa over and over and over — for about an hour and a half — without ever stopping to think about what her blood sugar was doing.  *AND* she did it after telling a device to give insulin for a “larger than usual” meal, then eating very randomly without really knowing for sure what her carb intake had been. She could have eaten too many or too few carbs, but it didn’t really matter, because the device was plugging along, doing its job…making a decision to give a little insulin, or a little glucagon, or do nothing…every 5 minutes without needing her to interrupt the game to make those decisions herself.

She just played.

And I just watched.

It was the first time since before her 2nd birthday that I witnessed my daughter simply being a healthy, happy child…running and playing carefree…without the burden of diabetes. I tried as hard as I could to savor those moments, because I knew they would be coming to an end. I studied every detail, and breathed in the sense of normalcy that accompanied each passing second. I committed everything to memory…her face was more relaxed; her movement was carefree; her smile brighter. She was experiencing life apart from the numbers — whatever they were — because she didn’t know, nor did she care.

I couldn’t get enough of watching her laughing and smiling and having fun. Nor could I seem to get enough of watching her do those things without the familiar worry in the back of my mind…replaying her previous carb counts and insulin dose/time while wondering if she should stop to check or find a snack.

She was, indeed, BIONIC.

{Stay tuned for the next part of her story. The study officially ends, she removes her “BioPanky”, and we have a chance to sit down with Ed Damiano to review some of her preliminary data.}

THIS POST IS PART OF A SERIES DOCUMENTING SUGAR’S EXPERIENCE IN THE 2014 BIONIC PANCREAS SUMMER CAMP STUDY.

FURTHER READING:

BIONIC: 9th Diaversary

On July 25, 2005, I sat in an ICU listening to machines beeping and buzzing while watching my unresponsive baby lying in a hospital crib. Her face was puffy and her eyes were swollen closed. Aside from breathing, she didn’t move very much.

The world hustled in to silence her alarms and prick her toes for blood drops every 30 minutes. They would come around again to draw arterial blood samples or attempt to restart a failed IV. All the while, I sat there, wondering how I would be able to keep her alive without a team of nurses and doctors waiting just outside the door.

She had three IVs in place: 1 for an insulin drip, 1 for a dextrose drip, and an extra for lab draws.

Poke – Beep – Push Buttons.

Insulin up.

Dextrose Down.

Insulin down.

Dextrose up.

And so it continued…poke – beep – push buttons…poke – beep – push buttons…for the better part of 2 days. It was a delicate dance between an IV drip of insulin and an IV drip of glucose.

I will never forget the doctor’s words to me that night:

“This was the last day of your daughter’s life. If you had not gotten help when you did, you would have put her to bed and she would have been gone by morning…”

I don’t remember much else about our conversation after hearing those words. He said the road ahead would be tedious. Frustrating. Exhausting. He told me this race would be a marathon, not a sprint.

He also told me we had won our first victory, simply because she was alive.

We came so close.

On July 25, 2014, my daughter sleeps in a cabin at diabetes camp. There are still people who sneak in during the night to poke her fingertips for drops of blood. Once again, there’s a team of nurses and doctors waiting just outside the door.

Soon, she will trial the Bionic Pancreas: a continuous infusion of insulin and glucagon…and the dance will begin again.

We’ve come a long way in the last nine years. I’m excited to see where the next nine takes us.

BP 1

There is HOPE.

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

Further Reading:

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

w collage 1

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.

w collage 2

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.

w and a 1

Good-bye, sweet girl.

I am so proud of you.

w and a 2

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.

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