{Update}Two Great Losses and The Bionic Pancreas

Yesterday and so far today haven’t been so good. I am mourning the loss of George Jones and Tyler’s CGM. But I did read up on the bionic pancreas so all hope is not lost. I hope!

When I got home from work yesterday the first words out of my son’s mouth is that he lost his CGM. I was stunned and immediately upset (crying upset, not mad upset). I wasn’t mad at him because it is just a “thing” and he is always so responsible with things of this nature. I had him search for it over and over. I called the transportation department to see if someone saw it laying around on the bus. I left a message at the school (they still haven’t called back). He thinks it will turn up and school, but I know deep down that it is gone forever. I know he didn’t lose it on purpose. And I know he feels terrible. But I am still just so sad. He did only lose a “thing”, but that “thing” gave me peace of mind. That is something I haven’t had in almost 5 years. It is amazing how quickly I got used to having it on my night stand. How soundly I slept knowing it would wake me up if their was an issue. But all will work out in the end. If it doesn’t show up then I will look into replacing it. It wont be cheap, but my peace of mind is worth it.

This morning, while I was wallowing in my own self pitty for not having the CGM crutch, I stumbled upon an article about a lady named Anna who just completed a Bionic Pancreas study, in which she was a test subject. She let the Bionic Pancreas do all the thinking, calculating, and dosing for her for 5 whole days! What a wonderful 5 day it must have been. You can read about her journey here, and more about the study/trial here. I haven’t been a fan of an artificial pancreas at all until now. I would like for the research to focus on a cure instead of treatments. But as I read Anna’s blog and the article I thought of my son. I thought about how happy and normal he would feel if he could just eat what he wants, when he wants. How he would love to just get up and head outside to do whatever, with out having to check his blood sugar. I am sure he feels the same as Anna and would be fine with all kids of “sites” on his body, if it meant he could focus his energy elsewhere and not on maintaining and correcting his blood sugar. Diabetes is constantly at the forefront of our thoughts, 24/7 – no breaks – EVER! Those thoughts made me change my perspective on diabetes research. Maybe a closed loop system wouldn’t be so bad after all.

Last but definitely not least. Mr. George Jones passed today. He is a legend and will be sorely missed. I have listened to his music all my life. George Strait is my favorite, but Mr. Jones’ voice was the only other male voice I would recognize on the radio as a child. I learned at a very early age that the tone of his voice and the lyrics of his songs where not made up, but were reflections of his real life. You could hear the pain and suffering in his voice. I often wondered why his life was the mess it was or seemed to be. I wondered if he was ever going to know inner peace (I am sure those are not the words I used as a child). I hope he now has the peace he seemed to need, if he hadn’t found it here on earth. I will not stop loving him today, but I do wonder who’s gonna fill his shoes.

{Update 4/27/13} Tyler’s monitor was returned to him by his bus driver. Bless Her!!!

Continuous Glucose Monitor (CGM) Love / Love-Not-So-Much

My youngest son, Tyler, has been using his Continuous Glucose Monitor (CGM) for about a month now. I have stated before that I love it. I still love it, but some times not so much.

I love the fact that I can “peak in” on his blood sugar levels without having him poke his finger.

I love that it lets him know he should check his blood sugar because his levels are either too high or too low.

I love that I can keep the receiver in my room at night and it will alert me for the same reasons. This way he can stay a sleep and not be bothered by it.

I love that it will keep alerting me until I do something about his sugar levels.

I ultimately love the peace of mind it affords and the tighter control we have on Tyler’s glucose levels.

But some times it makes me no so happy…..

I don’t like it when it alerts that his blood sugar is low/high when in fact it is the opposite.

I don’t like it when it alerts me all night long, even though I know it is only doing its job and the real problem is I can’t get Tyler’s glucose in range for whatever reason.

I don’t like that he has to have another device stuck on him and the he has to carry around another electronic device. He already has to carry his pump and meter with him all the time.

I know that in the grand scheme of things, this new tool will keep his numbers under better control. I know that this tool is helping him with his “Duh – I’m a teenager” moments, and me with my “diabetic care team blues”. It is just too much info at times.

DIABETES SUCKS

Don’t let my little rant discourage you from trying out this new tool. It really has changed our lives for the better. I do sleep better at night, when it isn’t alarming. The alarming is a good thing. It is letting you know there is an issue that needs to be resolved.

Any advice on raising a teenage boy with T1 diabetes? Or experiences with CGMs that you would like to share?