I ain't tellin' you nuthin' (OR how I came to be leary of my daughter's care team in two short months)

This week I'll be blogging every day on a different topic for the 4th Annual Diabetes Blog Week.  I'm very excited to be participating!

The topic for Monday May 13th is: Share and Don't Share

Diagnosis is like being blindfolded…

on a unicycle…
in a hurricane…
while floating on an inflatable pool raft, with an empty cup holder…

and wishing for a beer.

It's been 63 short days since Eleanor was diagnosed with Type 1 diabetes.  We spent 2 nights in the hospital.  So… we've had about two months at home flying solo.

We were impressed and delighted with the inpatient care and support during her stay at Dallas Children's on the endocrinology floor.  Even though the nurses told us we were in the oldest, shabbiest and worst wing, which was in desperate need of remodeling.  In fact, they told us our room was slated next on the remodeling agenda.  We didn't care.  We didn't care, because everyone there was so fantastic.  Who needs a chic room with the latest designer curtains when the people are good?

Diagnosis can be terrifying.  It can be terrifying even for a mama who's been married to a man with diabetes for 14 years of a 17 year marriage.   It can be terrifying even for a Daddy who's been managing his own diabetes for just as long.  And let's face it. "Terrifying" doesn't really begin to capture it, does it?  It's disorienting, discombobulating, heartbreaking, unexpected, and it leaves you flat-out-off-kilter.  It rocks your world.

But those folks at Dallas Children's did a pretty good job of helping us regain our balance and getting us back up on our feet in short order.  Everyone from the medical professionals to the volunteer staff in the playroom were really warm, informative and wonderful.  Shoot… even the EMT who pushed Eleanor's gurney up to her room from the ER had her name tattooed on his arm!  For reals!

…but…

After we got home things were not so great.

I began by educating myself.  I bought half a dozen or more books:  Books on parenting type ones; books on insulin pumps; books on continuous glucose monitors; books on nutrition; and books on the history of diabetes treatment, and I learned.  I joined forums and I talked other parents and patients.  I read research studies and I armed myself with information.  I figured out what I wanted for her and I went after it.  I had a clear idea of what I thought was the best plan for her:  a continuous glucose monitor and a pump.  Everything I'd learned supported this.

I called and asked to be notified about cancelations and l I got her in to see her endocrinologist earlier than originally scheduled, because I didn't want to wait 6 weeks to see the doctor again.


We were asked to keep a log of Eleanor's glucose checks, and we did.  We faxed it in once a week, with our own notes or questions.  Then we'd get feedback from the CDEs.

At first, I told them E V E R Y T H I N G.  Seriously.  I sent in two single spaced typed pages the first week.  I practically submitted my personal diary and dream log.  Every thought; every worry; every subtle nuance in her BG fluctuations.  I voiced my concerns; I shared my analysis; I gave my opinion about her treatment plan;  I asked questions.  I even asked for their opinion.  Duh.

Big mistake.  Huge.


Unfortunately.  When I started wanting to move more quickly than they like…  they started pushing back.  They said, "this is not how we usually do things!"

… and I kept being consistent and assertive… they flipped on me.  They turned the information I'd shared with them against me.


I had told them she rolled her eyes.
I had told them she occasionally resisted her injections.
(all perfectly normal, even predictable, behavior)


They told me it was all my fault.  Bastards.

Me with Eleanor and our pet hedgehog, Heggo.

Here I am.  A mommy.  A mommy who's vulnerable, frightened, tired and worried.  A mommy who is clearly extremely energetic and devoted to getting care for her daughter…

A mommy who loves every tiny freckle on her little girl with every fiber of her very being

and they found my soft white underbelly, and drove in the blade with a squeeze of lemon and a twist.

You know what they said?

They said it was because I wanted her to have the pump too soon.  They said it was because I was being too pushy.  They said I was rushing her and she wasn't ready.

What the hell do they know?

So, you know what I did?

I shut up.

And then, I went to a JDRF picnic.  And I told the other Type 1 D mommies about my experience.  You know what they advised me?  They advised me to shut up.

You know what my husband suggested?

He suggested I shut up.

Eleanor and Kenneth at the park

And that's sad.  It's sad because they could have been a great resource.  They could have been a trusted; safe; home-base for me when I needed it most.  They could have won me over, but instead they shoved me away with both hands and reached for something they could never have.

Control.

So now.  I don't tell them anything.  I fax in the logs.  I ask terse simple questions without adjectives.  I get straight to the point.  I don't feel safe.  I don't trust them.  They have become adversaries instead of advocates for my daughter.

I've tried to find another avenue for seeking her diabetes care, but I really truly do not have any choice.  I even asked the reps from the pump manufacturers if they could suggest another location for her diabetes care.  I got the same answer everywhere I went.

That's terribly sad, because, while I have the resources and the drive to figure out Eleanor's treatment for myself, not every parent does, and they are treated condescendingly and not given credit, and they may just take whatever is dished out, never realizing their child isn't getting the best diabetes care available.  Have you ever been sufficiently dissatisfied with health care that you sought another physician or team?  Have you ever been in a situation where you only had one choice of teams and found yourself trapped there?

The system at Dallas Children's is broken.  I'm not the only one who thinks so.  Plenty of parents on local groups agree.  They've witnessed and experienced similar exchanges.   I was zealously encouraged to call the feedback line and let 'em know what I really think.  And I will…

But what a tragic loss of opportunity for all of us.