Grace and I have had multiple, ongoing conversations about using the Share system, which allows people that she invites to see her CGM data. At first, total resistance to the whole idea of anyone else but her seeing her numbers. TOTAL. RESISTANCE. As in, 'Mom, there is no way I would ever share my numbers with you.' Regardless of the fact that I pick up her CGM at home and look at it whenever I want. And so does her Dad. There was no way Grace was going to have HER numbers on OUR phones.
Little by little, she came around to seeing a small, tiny, probably incalculable, value to having just me and her Dad able to see her data on our phones. Just a teeny bit of opening of the door in her mind to having others help her, or look out for her. She liked the idea of having us see data during sleepovers.
She agreed to invite me, her Dad and finally, with a push from me, the school nurse, to have access. We set up the Share and she went about inviting just us three.
Then, she saw it on her phone.
And she saw that SHE was able to access her CGM data just by looking at her phone, and not at her CGM device. She said "Mom, it just looks like I am checking out something on my phone, but really I am checking my CGM!"
A - HA!
The light came on.
"If I can be a spy on my data, you and Dad can too."
I told you, she's a smart one, my cookie.
"But I can turn OFF data notifications to you, Dad and Mrs. L."
"Yes, honey, I am fully aware that you can turn us off. Don't even think about turning off Daddy and I. You can turn off Mrs. L while you are on Spring Break."
Grace wanted to establish some rules for the Share. I think she wants to know when and how we will be using it. She wants, above all, NOT to be bothered by us notifying her when she is high or low, that she says she will take care of it on her own. We've had plenty of conversations about it, and we have come to some agreements:
- We will not text Grace when she is high or low. We can see it, but she will handle it.
- Her numbers are her numbers and we shall not assume she's not taking care of herself.
- We will not look 24/7, and we will assume she HAS dosed for everything she eats.
I agreed. She agreed. Dad agreed. We have the nurse on board to agreeing to help her take care of herself and not intervene unless she feels it's an emergency.
And just when you think it's all settled, that there are the rules by which you will all play, it all comes to a screeching halt. Grace put on Dex on Thursday, we went live with Share on Thursday night and Friday morning, she went to school. (You know where this is leading, don't you?)
Friday morning she woke up, from a little low a couple of hours beforehand, ate breakfast and dosed. Pretty usual stuff. Nothing alarming. CGM was reading 122 when she woke, and was confirmed with a finger prick. Grace went to school.
After dropping her off, I checked the Dexcom Follow App, and it read 255, with one arrow up. Hmm. High for her, after eating. We usually don't get a spike like that with what she eats for breakfast.
About 15 minutes later, I check in again. What I see alarms me.
355 with DOUBLE ARROWS UP.
What the what???
I break the rules. I text her school nurse and ask her to please see Grace and ask her to check.
THREE HUNDRED NINETY THREE.
Mrs. L brings her down to the office and she calls me at work. Her head and tummy ache. She doses 4.0u through her pump. She wants to come home. I turn around and drive back to school to pick her up. She feels lousy. We come home and I settle her on the couch. .6 ketones. I bring her water.
We say nothing about the Share App.
Until I say, "You know, I was happy I checked in with the Share, to see that you were so high. It worried me honey. I didn't mean to bother you, and I am sorry for texting Mrs. L., but I just wanted you to be safe."
Grace smiles. We might have opened the door just a wee bit more, to acceptance of others just helping you out because they love you.