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The EEG Saga, or “Let’s not blame the kid with the special needs, m’kay?”

16 May

Hey, remember that time I took Maura for an EEG and we were sent home because she wouldn’t cooperate and I was told they would reschedule?

Yeah…good times…

So yesterday, after not hearing from anyone after two weeks, I decided to ring Neurology at the children’s hospital and ask what the status was on rescheduling.  I even said “Yes, I’m calling because I haven’t heard back yet on the EEG that was supposed to be rescheduled.”

The woman replied “But it shows here that you just had one.”

“Um…no…”

“Yes, right here, it says you had one on 5/1.”

“No, we were scheduled for one, but my daughter didn’t want to cooperate so they sent us home without doing it and said they’d reschedule.”

Woman on the other side of the phone then says “Does your daughter have a history of being uncooperative?”

Whoa.

Just stop there. 

No.  No we are not going to blame the child with special needs over this. 

All things I should have said. But I just managed to sputter out “NO.”

I was asked if they went over the questionnaire and I said “Yes, but she wasn’t sure, so she was going to have the lab tech call me to confirm some things, but that person never called me.”

“Oh….well…hold on…because there’s nothing here about rescheduling….wait….let me find out what I can and call you back.” (all paraphrasing, of course, but you get the gist.)

I will say, they called back quickly, and I talked to the same woman who scheduled the original appointment.  There was profuse apologizing for all the mix ups, how I should have gotten a call from the lab tech originally, for the wasted trip, for not getting the home practice kit to familiarize Maura with the EEG, for the lack of rescheduling because – and this part was a bit unclear but sounded like that the doctor wasn’t even contacted about the rescheduling and it never was noted to reschedule?

Basically, if there was a crack in the system, we fell down it.  We fell down every damn crack.  If there was a call to be made, it didn’t happen.

So then the woman starts asking questions about things…like “Let’s go over the original questionnaire” basically to see where we went wrong.  I explained, again, that what happened was unprecedented.  Maura just refused to go near the bed.  That has never happened before.  “She was tired, and therefore cranky.” I pointed out.

“Oh, well, it was a sleep-deprived EEG?  We don’t usually recommend those for children with delays or autism, as it makes them less cooperative.”

First – Which part of “Cognitively disabled” on her file did no one understand? 

Second – what about the fact that I was told, by this exact person, that we were scheduling a sleep-deprived EEG.  I even said in the original scheduling conversation that waking Maura up five hours early for the day would spell disaster.  I was told that maybe I shouldn’t wake her up so very early, but to ensure she was tired so she’d sleep – aka, keep her up late, send her to school, whatever necessary to help facilitate her sleeping during the EEG. 

I did my part.  I followed instructions.  I did as I was told.  I did what I could to try to make that appointment successful.  I’m sorry if my overtired child with moderate cognitive disabilities didn’t play along perfectly.  But don’t tell me that oh, we should have done it another way after the fact.  I told you she’d be less cooperative if tired. 

*sigh*

Then there was a point in the conversation about how the doctor ordered the non-sedated, and how doctors see kids and they seem able enough to do this, but he only sees one side of them, and they see a whole other side, and the doctor doesn’t ask the right questions to know how they might truly act…

I pointed out that not laying on a bed?  That was completely new.  I didn’t even see that one coming.

And again – why are we singling out the child with special needs for the “bad” behavior?  Why are we expecting her to be the soul of understanding and cooperation? This is a children’s hospital for the love of Pete, surely you deal with all sorts of ability and understanding levels, right?  Also, why are we blaming the doctor who made the effort to establish trust with my daughter, who talked to her like a person, who showed her what he’d do first, explaining things on her level, and who at least read her freaking file enough to know that she has a cognitive disability, something you all seemed to have missed?

I also threw in, for the sake of being able to say it, how we were told that only one parent could come with to the EEG, but really, it might have gone smoother if both parents were there.

The response to that was basically crickets.

The woman then asked about if the practice kit was sent home, could I practice with her and then it might go more smoothly?

I decided to be honest – probably not.

I think we’d have the same scenario, mainly because in Maura’s little mind, she won the first round.  She didn’t want to lay on that bed.  She wanted to go home.  Guess what?  We went home.  Therefore, the next time she goes in, she’ll just pitch another fit and hope she gets her way again. 

The woman did pick up on the fact that part of the problem was just getting Maura to lay down.  She asked if Maura would be more cooperative sitting up.

Are you kidding me?

Maura all but begged to sit in the lounge chair, and we were told no, she had to lay down for the EEG.  Nothing could be done until the girl was horizontal.  Sitting upright was not an option, even though her two other EEGs were done sitting up. 

I actually said “That option was never given to us.  Maura wanted to sit in the chair and was told no.”

The topic of sedating her came up.  Again, I got honest – “Just so you’re warned, she’ll probably have a fit when she sees the needles.”

To my surprise, the response was  “Well, if she has a fear of needles, I don’t know if we can do a sedated EEG.”

I beg your pardon?

I’d like to state at no point did I yell “YOU’RE A *&%$* CHILDREN’S HOPSITAL!  SURELY YOU CAN DEAL WITH A *^$##% CHILD!” I would like a cookie now.

So that’s that.  I don’t know what’s going to happen, but all the proper people have been emailed and contacted in triplicate, I have been assured that everyone will most definitely follow through this time, that I will hear from the lab tech to schedule the proper EEG for Maura, will receive the home practice kit, et cetera, et cetera, et cetera.

But I will admit, I have become very frustrated over all of this.  Not because of the screw-ups.  I mean, this is my life, stuff like this always seems to gravitate to me.  And usually, I am very understanding of life’s kerfuffles.  It happens, mistakes are made, I get that.

What I don’t get is why the word “uncooperative” keeps being thrown out there at my child.  My child who – for all her special needs and lack of understanding of situations – is usually pretty darn cooperative.  My child who transitions well most of the time.  My child who can handle routine changes without a blink, who can deal with disappointments if explained to her, who can be stubborn but on a pretty normal level, who can follow directions…but maybe…just maybe…has earned the right to be a little distrusting of medical staff and facilities.  Not because any of the staff have been horrible to her – on the contrary, we’ve had so many positive encounters.  Even at the blood draw last month, where she cried the entire time, the nurses kept saying what a good girl she was being, and said she actually did quite well.  But our positive encounters have been because the adults in the situation didn’t expect her to exceed her ability levels. They could see she was bright enough to understand some of what was going on, and explained when necessary at her level.  And if something went wrong, they took the blame upon themselves.

“Does your child have a history of being uncooperative?”

No.  No she doesn’t.  Stop trying to make what are actually normal response and reactions for a child of my daughter’s abilities into something to be labeled “uncooperative”.  I did every single thing you asked of me to prepare her for this, and I will not apologize for my daughter’s fear of new medical procedures.  You’re the medical staff.  You’re the children’s hospital with the five star reviews.  Stop making it our fault.

 

 

 

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6 Responses to “The EEG Saga, or “Let’s not blame the kid with the special needs, m’kay?””

  1. saracvt May 16, 2014 at 12:35 pm #

    Told ya they were sloppy. And they treated my sister, a three-year-old child with severe cerebral palsy, the exact same way–as if all the difficulties were HER fault, and they were saints for putting up with her. They also assumed (they could have looked in her file; it was right there) that she was mentally disabled (she’s NOT) and said things carelessly in front of her that made her cry. Things I doubt she’s forgotten today, as an adult working for the mayor’s office.

    How much do you want to wager that those emails “get lost” and you STILL don’t get a call from them?

  2. Joy M Newcom May 16, 2014 at 12:47 pm #

    I would have gone into angry cry – barely controlled, righteous, angry cry. Man, I feel for you. You need an advocate on the inside. Any clue who that sympathetic, wise, compassionate medical professional might be?

  3. tmadeley66 May 16, 2014 at 1:11 pm #

    Blaming language has to be extinguished from our health care system. I have worked in the other end of the system your are currently navigating (geriatrics) and I continually saddened and frustrated me that persons with dementia would be referred to as “violent”. Seriously??!!

  4. marpou May 16, 2014 at 1:46 pm #

    Love your blogs. This one especially hit home. I almost took the face off one worker when we went in for a procedure. I try to always be pleasant, but there are times…….

  5. Kerith Stull May 16, 2014 at 7:05 pm #

    Oh.. my… gravy… Seriously??? Why can’t they get their act together, get their attitude straight, and get their service-oriented hat on!! I’m just fuming for you! And it’s a children’s hospital!!! Sheez!! (I think I’ve hit my limit on exclamation points in this comment…)

  6. teresamcnally May 16, 2014 at 8:19 pm #

    Well said!

    Teresa

    >

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