August 19, 2008

Not the Mama

Delaney went to Diabetes Camp. It was about 36 hours after we got home from Friends for Life. In between she had the swim league champs where she swam up age groups, and the team picnic. Busy kid.

Camp requires a form be filled out with her the basal rates. So the night, after the picnic, I wrote them all down. I did the best I could but some of her's are odd, starting on the half hour at times, they didn’t fit the camp's form cleanly. Her basal are all over the place a mixture resulting from trial and error. A product of evolution, they worked.

She was due for some serious adjustments. Her A1C, at her check up, hours before leaving for FFL was on the higher than we would like side. But We didn’t want to mess too much with basal rates at the convention and subsequent week of walking around Disney. At Disney she was running on the low side probably as a result of all the walking and the hotter than the surface of the sun paths we were walking on.

Anyway checking in to camp, they didn’t want to look at the form. They started reading off basals from the pump. OK, why the form but ok.

Until they flat out got it wrong. So wrong it just jumped out - 6:00 am to midnight x. Wait my brain said, (OK me and 'brain' may be mutually exclusive, M&M size clump of nerve endings may be better.) But even the M&M size clump of nerve endings knew there are all those strange afternoon gyrations and the ramp up for the growth hormones that hit right after she goes to sleep. There was a lot of error in the trial and error that got to these numbers and I did a lot of it, error making that is. You have seen my spelling. You gotta know I make a lot of errors.

So I said, "No, that's wrong. Her basals don’t go flat from 6:00 am to midnight and why do you have us fill in this form if your just going to blow it off?"

Well they said they assume that the form is wrong - filled out a few weeks ago - so they don’t use it.

OK so why send it out then? And you are still not reading her pump right.

Oh well they know they were reading it wrong but they “were waiting for the mother” to come bask to ask her about the pump.

That went over really well.


Well maybe not.






So when we picked her up a week later the Endo fellow had a few fine points for me.

The form was wrong.

Did the doctor set up these basals, because a doctor should?

They are very complex.

She is running high and the basals need changing.

Delaney doesn’t know how to adjust her basals and she should.

And her I:C ratio needed a tweak.


Thanks. Love Ya / Mean It.



The form - nice of you to actually look at it. What was off what I wrote or what you wrote? No answer. Speaks for itself.

No the doctor never looks at her basals, occasionally the nurse talks them over with us but I can't recall once in three years when the Endo said boo about them and I have never missed and endo appointment. I set up the basals. We are the primary care givers and that is not only fine with her care team it is their stated goal.

Complex, No kidding? You should shave seen them when we needed hourly changes to average half the incremental change rate of the pump was capable of. Looked like a roller coaster.

Doh! I know they need changing. I told you that when she checked in but seeing how she was running daytime lows at Disney on a 10% reduced basal I didn’t really feel like changing them in the 36 hours between then and camp. Oh I told you that too.

Not for nothing y’all didn’t impress me when we checked in and with an unknown physical activity schedule I voted for running basals on the low side rather than risk a lot of lows on the BG side.

Oh and she is a total queen at making temp changes when asked to, can do most of her self care. She is ahead of where her brother was in both age and time from diagnosis on every type 1 skill. She is fairly good about combo blousing when she needs, asking us if she should.

Her reading needs work. Her penmanship could show a little more care. Her room is a rat’s nest. She needs to help out with the dishes and is due to better learn how the laundry works. She could be a little better at carb counting and I think in the grand scheme of things those take precedence over basal tuning.

But what do I know?

I’m am not the mother.


Delaney loved camp.

2 comments:

tmana said...

I can see how much that burns you... have to wonder how many of those patients/campers come from "broken homes" or homes where the father is not active in child-rearing.

And what would they do, pray tell, if the child's mother was not available (deployed overseas) or, as occasionally happens, dead? Or if the child were being brought up by two fathers?

For the moment, I'm thinking that's even worse than referring to people by denigrating and/or offensive epithets...

Scott K. Johnson said...

And they call these folks "caregivers". Kind of scary man.