Why we chose to #Loop | #WeAreNotWaiting #DIYAP

fullsizeoutput_22433Caleb and I were in the lobby of his dance studio and he started jumping up and down – not for dance but because he has just received an email announcing his acceptance to the Global Leadership program to which he applied. Up until that moment, I was pretty certain I had nothing to worry about, expecting he would not be awarded the scholarship. Not that I don’t have confidence is his abilities, I just assumed it was a competitive program (which it was) and a long shot (apparently not).

As Caleb is celebrating, I really want to be happy for him, but I’m overwhelmed with dread. I’m responsible for Caleb’s care overnight. I prioritize his need to sleep as a growing young man, and take any measures necessary to keep him safe with as little disturbance to his rest as possible. He’s been on sleepovers and overnight field trips, and although he’s gotten through them, they’ve been complicated. We were just in Italy for a family trip last summer and with irregular eating patterns, carb intense meals, and walking seven miles a day, diabetes management worked out reasonably well, but took a lot of extra attention, creative extended boluses, temp basals, and corrections overnight to keep him safe. All of which I did.

Caleb knows what to do in the waking hours of the day, and if he has any questions, I’m usually accessible to trouble-shoot, but overnights and vacations are my responsibility. He’s fourteen – vacation should be a vacation, not extra work and stress. He’s not immune to the anxiety that the variables of traveling bring, I just do my best to soften the burden as much as possible.

I couldn’t grasp how we were going to get him prepared to do it all within the next five months. All I could think of were the overnights – him exhausted after a long, active day, with carbohydrates releasing into his bloodstream willy nilly, an artificial process crudely, manually, and non-scientifically slapping insulin at him, with aftereffects of varying levels of activity unpredictably lowering his blood sugar – to me, it was somewhat horrifying.

I heard it over and over again – “He’ll be fine!” Yes, he’s a bright young man and very responsible about his diabetes – he’s never forgotten to bolus for a meal, for example – but that isn’t useful when you’re in a deep sleep, unresponsive to alarms blaring directly into your ear, and your blood sugar is 70 with a rapid drop alarm. I know the term “dead in bed,” and I can’t ignore it.

My goal for Caleb’s blood sugar on this trip was not optimal care. My goal was no need for emergency intervention: no severe hypoglycemia resulting in unconsciousness and no hypoglycemia resulting in vomiting. Okay, something a little tighter than that, but really, if that’s what it ended up being, it would have been fine. I just wanted Caleb to be safe.

We decided to try Loop because overwhelmingly what I read about a hybrid closed loop system was the safety and assurance it provided overnight and how users were able to sleep like never before.

Simplistically, this is what Loop does:

An app on Caleb’s phone performs a bit of magic. It communicates with his pump through a little computer (see the pic above) via bluetooth. The app connects with Dexcom, assesses his current blood sugar level, the direction of his blood sugar, the amount of carbohydrates he has on board and the amount of insulin he has on board predicts what his future blood sugar will be. Based upon those predictions and the defined target bg range, the Loop app will calculate a need for insulin dosing, either higher, lower or the same and change Caleb’s basal insulin to administer any adjustments. This evaluation is done every five minutes, and his basal is adjusted every five minutes. Caleb does nothing while the app, dexcom and his pump do the work.

If Loop predicts a low blood sugar three or four hours in the future, basal will be reduced or shut off. If Loop predicts a high blood sugar, basal is raised.

We’ve managed Caleb’s blood sugar manually in a similar, albeit much broader way – played with basal to address rising and dropping bgs that weren’t what we expected. We’ve used SuperBolus techniques, again, using basal to deal with the peaks and valleys of certain foods, like breakfast cereal. But what we’ve achieved manually doesn’t compare to what is attained by recalculating future bg and adjusting dosing every five minutes. My hope was that Loop could be the watchdogΒ over Caleb while he slept, when I couldn’t be there, softening out the Dexcom line and keeping him safe.

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Diabetes Waits for No One, Not Even God

Caleb had his first communion this weekend. He was excited. A little nervous. I had to drop him off in the hall of the church with the other communicants about a half hour before the mass. Family waited in the church. Before dropping him off, Caleb checked his blood sugar. He was around 100 but with some insulin on board from lunch. We didn’t want a low during the next hour and a half, so he had a juice box. I gave him instruction to ignore DexCom unless he was 300 double arrows up or if he felt low. Otherwise, just relax and enjoy.

Easily said. Not so much done.

Each communicant is assigned a pew. He or she has a seat at the end with his/her family next to him/her. Caleb’s pew was toward the front on the right side. We had a very nice view as the children processed into the church. They all looped around a full time before taking their seats in their assigned pews.

We watched the children as they intently walked through the aisles. Some solemn, some smiling. All endearing. None saying anything to anyone.

Then Caleb turned the corner. My smile broadened when I saw him. He was walking as instructed, as the others did – hands in prayer, not too fast. As he got closer to us, he began to mouth something and sharply move his hands up and down a couple of times.

I only caught the end – “double arrows up”.

I felt a little badly that this was on his mind, but couldn’t help laughing at the animated way in which he was trying to communicate to us while also being respectful in church. Although he was passing by us to do his full loop around, he would be sitting next to us in just a moment. This tidbit of info could wait.

We have a still shot, which doesn’t quite capture the animation:

And an attempt to reenact the scene:

I shan’t name names, but I wasn’t the only one who laughed. Caleb completed his procession and took his seat. He told me “217 double arrows up”. I quickly gave a little bolus, he told us we were disrespectful for laughing in church, and the mass went on without further incident.

He was proud and happy at the end. I was too.

And DexCom was 98 flat.

Please note: it is not advisable to make dosing decisions off of a CGM result. I am not a medical professional and the postings made herein should not be taken as medical advice in any way, shape or form.

The Prospect of Fixing Things

8th grade - just before getting contacts

I was in fourth grade when I became four-eyed. I wore glasses every day until eighth grade when I got my first pair of contacts. I wore contacts for more than half my life until my eyes couldn’t bear the irritation and then started wearing glasses again almost every day.

For years I dreamed of getting my eyes corrected surgically. I discussed it with many who did and praised the results. “Life-altering.” “Best decision of my life.” “Worth every penny.”

There was a concern for me because I heard those with an astigmatism might not be a candidate. I was also distracted with more important things like three little ones running around the house with a continuous rotation of needing my attention.

Then about a year ago I took the plunge and went for a consultation for LASIK. I was interested, but didn’t know if it would work for my eyes.

I got the thumbs up. No problem. They could do the procedure and bring my eyesight to 20/20. “What date are you available?”

I made an appointment and drove home. I had about an hour’s drive and on the way I started to let this sink in. I was going to be able to see. I would wake up and see. I wouldn’t have to feel awkward wearing glasses. I wouldn’t have to deal with contacts and irritation and supplies. No more worry about the expense, or insurance coverage or prescriptions or keeping up with it all. I would just open my eyes and be on my merry way.

I hadn’t before let myself really consider what it would be like. I’d been doing it for as long as I could remember. I was self-conscious about it and it was a nuisance, but it’s what I needed to do so I could see. I didn’t know anything else and for the first time I started to get excited about life with eyes that worked.

And then it hit me. It hit me like a frying pan smacked right in the middle of my face.

Caleb.

If I could be this joyful about getting my blurry vision corrected, the depth of the elation at the prospect of getting his pancreas repaired would have to be at least a hundredfold of what I was feeling.

My joy went to sorrow and I wept the rest of the way home. I felt guilty about having the option to fix my broken organs when Caleb, and so many others, do not. I considered not doing it as an act of solidarity – if pancreas’ can’t be fixed then neither can my eyes. But logic won out over emotion and I went through with it.

I can see now. For a year I have woken up and gone on my merry way. It’s nice and I am happy for it. But my joy about it has never been what it was for those brief moments on the ride home from the consultation. It is neither life-altering nor the best decision of my life. Whenever I think about it, my thoughts are always directed to what cannot yet be fixed.

Until all pancreas’ can be made to properly secrete insulin, I will not feel celebratory about my vision. I want for Caleb what I felt for those few moments on that ride. I want that for all those with diabetes.