I have no idea what has happened...
Everything was beautiful....
After a whole day of fighting lows, extreme lows one after the next, I gave up and called the clinic.
We made changes...
A lot of changes, I don't think we left one thing the same...
OK, maybe one little basal rate...
My husband and I fought over the changes...
"Great now she is going to be sky high all weekend" he said.
"Dr. M is going to be pissed that we are changing all of this" he said.
I told him I don't care, I have no idea what the hell is going on with her blood sugar, I'm sick and tired of chasing these lows and I'm making the changes. If she is running extremely high we can change it back.
He was mad, he just spent countless appointments getting us to this point. He spent countless hours telling me that "it's O.K. Nic, we will get there, we will get her A1C down".
So I wrote down all of our old basal, bolus, sensitivity rates so if we needed to we could go back.
Because only a few days ago our numbers were beautiful. I mean amazingly beautiful for 3 days...
Before all this...
So I made the changes.
So I was up 5 times in the middle of the night, 3 of which force feeding food to a sleeping little girl who wanted nothing to do with it.
Finally by 6am a 13mmols. Amazing to see after a whole day and night with numbers under 5mmols.
Then an 17mmols at breakfast and a look from the hubys... the "I told you so" look...WHATEVER!!
But wait, a 14.8mmols then a 6.4mmols and then...
A 2.9mmols...
54 carbs later and now we wait to see what way diabetes wants to go with this.
I'm just lost and tried and frustrated and sad. I hate having to call the clinic, I hate catching lows, extreme lows that Cara is not even feeling, I hate second guessing what I think I know...
I HATE DIABETES
This experience does shine some light on something...
The artificial pancreas, amazing technology, life saving technology BUT if you can't afford it WHAT GOOD IS IT?
Do you want your hard earn fundraising donated money going to a technology you can't touch?
Case in point, we have the amazing Veo, ya the one with low suspend, the one that can predict and stop lows before they happen.
So why all the lows, why the whole day and night of lows?
We don't have health coverage. All of Cara's costs comes out of our pocket. Everything except our amazing Veo pump which is covered by our provincial health coverage. However CGM's are not covered within this program.
So no CGM right now and the Veo means we still have lows.
What good is the amazing talents of the Veo if you can afford the most important part...
The CGM!!
I'm just wonder how affordable this amazing technology the artificial pancreas will be?
Will Cara still be at risk of being one of the 1 in 20 even with the artificial pancreas available to the public...
Just something I have been thinking about.
4 comments:
Making big changes is always topic for heated debate around here, too. But sometimes you just have to DO SOMETHING when those numbers won't do want you want them to do!
Hope the BGs are settling in!
Clinic should have guidelines for repeated and sustained lows.... you did exactly what our diabetes clinic would have told you to do. You have to=no choice but to respond to the situation at hand. Will she go high again? Probably. You can easily adjust with the pump. Pressure has to be put on the government to cover cgms. And the insurance companies. It will not be an easy battle to win. Many teen and adult diabetics don't want to wear two sites 24/7 for years on end. So the question is not only will many diabetics not be able to afford this technology, many will refuse to use it. I am happy to see any advance. But what I really want is a safer insulin, one that does not come with the high price of constant debilitating lows. Strange persistent lows that you cannot account for could also be due to a thyroid problem, Hashimotos or hypothhyroid. Labs should be take to get her T3 and T4 levels checked. I hope the low pattern ends shortly so you guys can relax a little. Very scary.
sadly Cara won't be alone. This bothers me immensely, too. Here in the good ol' USA my husband has a state job and still doesn't get health coverage that will pay for my son's CGM. We pay out of pocket. We raise funds for JDRF, ADA and several scientist all the while begging our family to buy a box of CGM's for us for Christmas. Truly frustrating. So...we have decided no more fundraising for JDRF, now if only we could come up with a way to fundraise for all of us families that have little/no coverage for the current technology available that we can't afford...that'd be helpful indeed!
You SHOULD make changes on your own-it's taking responsibility, don't worry about the doctor. You know your child better than ANYone.
We still don't have a CGM since it's expensive and not covered by our insurance. It is frustrating, I'm sorry. : (
Hope it gets better, I do know how you feel. hugs!
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