Saturday, January 26, 2013

Not All Visits Go As Planned

In the spirit of talking candidly and openly about type 1 diabetes and our family, I decided to tell you a little bit of the story that happened during our A1c appointment.

Remember my happy Facebook announcement that our endocrinology department was adding forms to their online document center?  Well, as joyfully happy as could be, I quickly downloaded two sets of the forms, printed and completed them in advance of our appointment.  (As a side note, we usually receive the forms upon check-in and am given about five minutes to race through them before being called back.  x2.  Yes, a huge stressor.)  Seeing the option to print them out ahead of time and complete them in the luxury of my own home was like having a dream come true. 

With that extra bit of happiness in my pocket, the four of us checked into the main floor and happily waited to be called back - with me feeling as relaxed as I have ever felt at the start of the appointment.

In the usual five minutes, we were escorted to the vitals area and the girls were both weighed and measured.  A short time later, we were in the room where we would remain throughout our visit - a nice little four chair villa, without a view! 

A1c and blood sugar checks were completed and then, a nurse that we had been introduced to but not really "met" came into our room. 

Now here is the thing.  I am always prepared for these appointments.  This appointment, maybe even more so due to having completed the forms at home.  I had our log books with print-outs from our Animas Ping pumps (full color, my friends!) and every blood sugar from the past two weeks.  I had changes that I made throughout the quarter and information on scripts ready to go.  All of this fine documentation is housed in three ring binders, neatly collated and with identification from each child. 

The new (er) nurse started to open the binder and remove only the forms from the hospital's website.  I stopped her and explained that everything she would need was actually in that binder and she would want to give that to our endo.  She sighed loudly and put the papers back into the flap on the binder and walked out.

I wiggled my eyes at my husband to see if he noticed anything and he wiggled his back.  The vibe from the nurse was strange and almost immediately, we felt a little uncomfortable.  Shaking it off and talking to my silly kids, I thought maybe it was just something in that moment.

A few minutes more and the newer nurse comes back in and is obviously agitated.  She is holding the print-outs from the hospital website and says that I didn't fill them out correctly as there is no total daily basal rate on the form.  I shook my head no and explained that I did notice that was missing from the form, so instead I wrote it on another space and also marked it in the binder as to show the corresponding data. 

She sighed again and became even more upset and said, "Well, I didn't bring the binder with me.  I guess I will have to go back and get that to look.  You have to show me it."

Now at this point, I am barely able to look around the room.  My cheeks are flushed and I am feeling very uncomfortable.  It was as though I was being scolded for doing my homework incorrectly.   However, I have no time to think about it because she is quickly back in the room and demanding to know what I wrote for basal rates and where it was located on our sheets.

I point out what I referred to and she shakes her head again and says this is not what she wanted.  She needed FIVE days.  Besides that she tells me that she wants different basal rates - not what we actually gave our children through the pump, but what the pump is programmed to give them.


I have no idea what she means and I say that. 

And this is where it really went south....

The nurse gets very angry and tells me that I am going to have to add up every basal rate by hour because she is NOT going to do that.  She says that I need to figure it out in our pump and that she doesn't know anything about Animas pumps.  She tells me to take the pumps off the girls - RIGHT NOW! - and start looking.

My husband jumps up from his seat and starts frantically looking through the binder.

I don't know what to do, so I walk over to the girls and ask for their pumps.  They are confused and it takes them a moment to realize that I really need to see their pumps.  They disconnect and hand them over so that I can also frantically scroll through the settings to see what this nurse is talking about. 

All the while she is talking loudly and strongly about us being "wrong about the basal rates". 

Then finally, she sees a screen that has the number she wants (for anyone with an Animas Pump it is a number at the top of Basal Rate Settings). 

Here is the kicker.... the rates that I gave her were something like 8.189 for youngest daughter (actual) while the rate in the pump was set for (8.200).  Are you kidding me?

She never said anything after that - just walked off in a huff and taking my binders with her.

My husband and I sat there staring at each other, almost forgetting that our daughters were in the room and saying, "What a b&*$^!"

My hands were shaking, my heart was pounding and my eyes were wide as could be.  I couldn't fathom why anyone would act that way.... over a basal rate? 

When she came back into the room with the binders, I spoke her name and said that after her behavior to us, that I did not think she was welcome in our room anymore and would she please leave.

Never before (we are talking over six years of T1d care at this clinic) have I ever felt the need to say that to anyone.  Not once. 

We continued on with the appointment and I know the office staff was probably thinking it was a mutual problem and consoling her (later heard that she was indeed very upset too) but I stay strong in my knowledge that we did absolutely nothing to become the target of her rage at not having the right basal rate.  We simply were at the right place and at the right time for her to let off some pent up anger.

In front of my children, though?

That stinks, I know.  But we are all human beings and NONE OF US are perfect.  Not me, my husband or my daughters, that is for certain.  However, since my daughters were witness to seeing her anger and were also watching my reaction (intently as only children can do), I had to make ammends before we left the office.

As we walked out of our room and as we entered the exiting reception area, the new nurse caught up with us and nervously handed the girls a print-out on the revised food pyramid.  She didn't meet my gaze or say anything to my husband or I.  Instead, after she finished talking to the girls (who were obviously scared of her and didn't say a peep while she talked), I asked if I could speak with her privately in the hallway.

She agreed and I told her that I was disappointed with the way things were handled by her and I asked her to leave our room because the hospital has become our home away from home.  In dealing with diabetes, this is our life, I explained.  It was not ok to make any of us feel badly for trying to take care of our children  or for not understanding what or why she wanted something and if she was making them or us feel uncomfortable, than she should not be there.  We didn't have time for that. 

The nurse was crying and telling me that she didn't even realize that she came across that way.  She said she didn't mean to be harsh or anything like that.  The tears were flowing and I felt so bad for her.... in a way that I would for anyone who is obviously struggling with something big - and I don't honestly think it was me, our family or basal rates.  Her anger came from something much bigger than probably anyone will ever know and that is just.... well, sad.

I told her that I wasn't going to hold onto any resentment and that I wasn't mad at her.  In fact, I explained how she could try again with us in three more months because we would be back with our diabetes.  I just hoped that she wouldn't be angry or upset when we saw her.

She agreed and I offered her a hug - which she took.

And now, I just feel numb and a little mixed up at who really is the patient... 

The thing about living with a disease for this long is that you kind of forget what you go to these appointments for.  I think that might be a dangerous thought to have... because really, at the end of the day, our family needs the advice, encouragement and strength to get through another 3 months. 

What we don't need is unkindness.


Scott K. Johnson said...

Wow - what a story!

It was really nice of you to talk with her afterwards, and hopefully the next appointment will be much better.

I love this line -- "because really, at the end of the day, our family needs the advice, encouragement and strength to get through another 3 months."

Naturally Sweet Sisters said...

True reflection... I hope that this post serves 2 purposes: One that families DO NOT need to accept bad behavior from anyone in the clinic. Speak up and advocate for your family. Two, if someone is out of line, that we remember the problem is THEIRS and that as a parent, we need to best model the behavior we want our children to use. I say this all of the time, but my kids make me a much person than I really am:)