Just stamp “Uncooperative” on our file

2 May

The EEG didn’t happen.

We kept Maura up late, got her up at her regular time, sent her to school with her scraped up face and a note to explain why her face was scraped up and that I’d be picking her up early for a doctor’s appointment, I had packed up everything possible, including a new movie, to which I even downloaded onto my phone just in case (along with Maura’s new movie love, “Ice”…um…”Frozen”), had a new mermaid doll to go with the new-to-her Little Mermaid DVD, her three books, Shaun the Sheep, a penguin, nail polish (because I had this idea of her sitting there letting me paint her nails while they stuck stuff on her head), snacks for afterwards, even a book for me if I needed it…

Yeah, I was optimistic.

Since I’d never been to the children’s hospital, and knowing that Seattle traffic can turn on you in an instant, I gave myself an hour for what was actually a fifteen minute drive – so we arrived early.  We checked in, were given a map and a pager, with instructions on what to do if the pager never went off, and told that there was no waiting room near EEG, so we’d have to wander.

Maura wanted to go to the car.

Maura wanted to go to Starbuck’s.

Maura wanted to leave.

Waiting times without a waiting room isn’t that fabulous, especially when you’re doing a sleep-deprived EEG on a special needs child.

Now, I’ve been in a couple hospitals in my time, thanks to Maura.  Okay, all the out-patient clinics and ER’s.  They all had waiting rooms by their specialties.  Including Temple Street, in Dublin, which was slightly mocked by the woman who called to schedule the appointment when I stated her last EEG was in Ireland (“Oh, well, it may not have been child-friendly, not being a children’s hospital.”  Um, it was a children’s hospital, thank you. And they did have a (albeit tiny) waiting area.  I guess this caught me by surprise, as everything else about the hospital grounds seemed very cool.  I mean, you pull up and everything is blooming and lush and full of life, and their crosswalks have lights in the ground even, and the elevators have fabulous murals, and bubbles in the walls to give you that underwater feel (the building we were in was called “Ocean” – so yeah, ocean theme.)  Even Maura was impressed by the bathroom.

But no waiting area.  So we wandered, while Maura kept asking for Starbuck’s and the car.

The girl is no fool, she can smell a medical facility a mile away, no matter how well they landscape and decorate it.

Finally it’s our appointment time, 2 p.m., and our beeper has never gone off, as I was warned might happen.  So we follow the map and find the EEG room, where a woman is waiting for us, greets Maura, and says “Oh wow, this never went off huh?” when she took the beeper.  Um, nope.  Then she informs Maura (who spots her scrubs so starts moaning about the boo-boo on her knee which she was fine with the entire time we wandered) to be very quiet because people are sleeping.  We follow her into Lab 2, which was just a big hospital room with no windows, a bed, a recliner and a small chair.

Maura decided to stage her protest from the small chair.

My Supermom senses are tingling, but I try to ignore it.

Maura decides to moan about her knee more.

The nurse offers to make her a band aid if she just sits on the bed.

We lure Maura to the bed.  Nurse makes a band aid.  Maura’s happier.  I’m thinking “Ignore the knee, it’s a stall-tactic!”  but play along.  Nurse asks nicely if Maura can now lay down on the bed.  Maura bolts to the small chair.

I try to lure Maura to the bed.  Nurse makes her a band aid.  We ask her to lay down on the bed. She lets out a howl and goes for the chair.  Nurse reminds Maura that we have to be quiet.  I’m realizing that this is all going down the toilet faster than the proverbial turd.  Nurse tries to explain to Maura what will happen, including showing wires and drawing smiley faces on our hands.

Maura’s not buying it, and howls and yells “Go away!” every time we try to lure her to the bed.

Another nurse pops her head in to tell our nurse to give us some alone time.  Maybe I can lure her onto the bed.

I sit on the bed.  I offer to give Maura hug.  Maura goes for the hug.  I try to calm her and chat about laying on the bed so the nice nurse can play with her hair.  All is calm.  Nurse pops back in.  Maura pushes me away and goes for the chair.  Nurse already starts talking about having to schedule an EEG with sedation. Maura points to the lounge chair, nurse states that she can’t sit there either.

Seven minutes in and I know we’re done for.

Nurse gives us a couple more minutes alone.  Maura won’t even look at the bed. I lay on the bed to show it’s nice.  I ask her, maybe plead with her a little, but we both know I’m losing this battle. Nurse arrives back in, starts talking of rescheduling, how Maura is now too worked up to get a clear result anyway, helping Maura pack up her things while telling me how she’ll suggest to the doctor that maybe we try a non-sleep deprived EEG, or maybe we could just wean her off the seizure meds without doing an EEG since she’s on such a low dose. There was also a question of whether the person scheduling the appointment went over the list of questions with me (about whether Maura would be cooperative.)  I said yes, but we’ve never had an issue with just laying down on the bed.  We’ve also never had a sleep-deprived EEG before.  We also never got called by the EEG lab tech, like the scheduling person said we would be called by, to ensure we were scheduling the right thing.

Then the nurse asks “Oh, did they send you the kit so you could practice at home?”

<headthunk>

Turns out they’ll send you a special little kit with the wires, etc, so you can play EEG at home.  We didn’t get that.

Maura complains about her boo-boo knee again.  Nurse gives her the last little bit of medical tape so “Mom can make you a special bandage at home!”  Mom is not feeling the love at that moment.

And as we turn to leave, Maura all happy that she won this round, I hear the nurse say “Oh, the poor dear is limping!”

LIMPING!

I muttered something about “Drama Queen” and leave the EEG lab.

It’s 2:15 p.m.

Maura asks for Starbuck’s.

I am completely deflated and wondering how much we’re going to get billed for this failed attempt.

Don’t get me wrong, the nurse at the EEG lab was perfectly lovely.  Everyone was very nice.  It wasn’t that it was a traumatic experience in any way.

I just wonder…why is it so hard sometimes for the medical community – people who should be the most aware of kids like mine – to understand Maura’s reactions?  Is it because she looks “normal”?  Is it because she doesn’t have a label to help them understand better?  Is it because they’re used to dealing with either the very cooperative or the very uncooperative that moderately uncooperative is the unknown?  Why do they always expect a special needs child to be quiet?  They asked me if she minded having her hair played with – I answered an honest “No, she loves getting her hair done.”  If they had asked “Can she be quiet?”, I would have laughed and said “Oh heck no!”.  I try to be honest about my child, really.  But she doesn’t always understand.  She doesn’t get what’s going on.  Why is that so hard to comprehend?  One would think medical staff would be the ones we don’t have to explain this to, but more often than not, I’m finding myself trying to explain this to them.  Maura may not have a diagnosis, she may be our unique sunflower, but she’s not that different from other special needs children.  So why do I feel we’re misunderstood?

But it doesn’t matter.  We now probably have a big “UNCOOPERATIVE” stamped on our file at the children’s hospital.  Now to wait for the call to see what will happen next.   Because, you know, Round Two of the EEG will go SO much better I’m sure.  I probably won’t be able to get her out of the car in the parking lot.

Oh, wait, I’m supposed to Think Positive!

I’m positive she’ll start balking as soon as we pull into the parking lot.

😉

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12 Responses to “Just stamp “Uncooperative” on our file”

  1. saracvt May 2, 2014 at 11:35 am #

    Ummmm…no, she was NOT PERFECTLY LOVELY! To suggest that you take a patient OFF her anti-convulsants, when you have CLEARLY not read her file (even if she had, that’s overstepping her boundaries; that’s ONLY a neurologist’s consideration) is completely and utterly OUTRAGEOUS!!! And to not to provide a waiting room for sleep-deprived people–that’s just STUPID!

    Okay, I have never liked Children’s Hospital since they treated my sister (severe cerebral palsy, almost complete deafness, but NOT mentally disabled) so badly in the 70s it traumatized her for 9 years. When I heard you were going there, I kept my mouth shut and thought–prayed–“Probably they have changed.”

    But it appears they haven’t. They are still sloppy and rude. If I were you, I wouldn’t go back. You’re not uncooperative; you were treated ridiculously poorly.

    • phoebz4 May 2, 2014 at 12:30 pm #

      She was suggesting that the doctor may decide not to do an EEG before weaning her off meds – of course, the whole reason for the EEG is because we’re looking to do a trial of weaning her off meds. But yeah, I’d rather talk to the doctor about that.

      Sorry your sister had such a horrible time there. I have a similar reaction to the Cleveland Clinic after a traumatizing blood draw where we got yelled at by Head Nurse because Maura was screaming too much, and then oops, they forgot one of the tests, can you bring her back for one more blood draw? GAH! And then the specialist we waited six months to see, one of his first questions was “Has she ever had a seizure?” Dude, really?

      So in that respect, yesterday went pretty well lol!

  2. Joy M. Newcom May 2, 2014 at 11:49 am #

    For what it’s worth. You did your part awesomely. Honestly.

    • phoebz4 May 2, 2014 at 12:23 pm #

      I do believe I did. I didn’t even break a sweat. Of course, maybe because I’ve gotten good at gauging when a medical appointment is a bust. It’s my superpower, lol!

      • Joy M Newcom May 2, 2014 at 12:40 pm #

        Here to the stars (and professionals!) aligning in your favor next time. To infinity – and beyond!

  3. Christine Stimson May 2, 2014 at 11:57 am #

    No waiting room, no sending you the kit ahead of time, no pre-appointment call. As for them not understanding your child, label/diagnosis or not, every child is different – those who work with children ought to know that. You were perfectly lovely. I hope EEG #2 goes far better.

    • phoebz4 May 2, 2014 at 12:40 pm #

      I’m so glad others think it’s weird that there was no waiting room. I did think that was a bit odd.

      OH! And when they scheduled the appointment, they told me that only one adult could be there, there was only room for one adult. Except the rooms were huge, and I so could have brought a second parent. in easily and two chairs where we both would have been out of the way of the technician. So why the one-parent rule? It would have gone a lot smoother if there were two parents involved there. And yes, I will be bringing that one up.

  4. steevbeed May 2, 2014 at 1:12 pm #

    You poor things. If it makes you feel better the practise nurse at our family doctor won’t treat my son after he bit her when she gave him a flu jab. Don’t worry about having uncooperative stamped on your file, worry about getting what is right and best for you all. You should see the lists of demands we send to the hospital when we have planned visits.

  5. Cathy May 2, 2014 at 1:35 pm #

    Goodness, I think you were anything but uncooperative. I feel your pain. I’ve SO been there. (Son never did get the EKG.) It’s so difficult to access medical care with our kids. Hang in there.

  6. Amanda May 2, 2014 at 5:11 pm #

    I’m normal. Except that I am claustrophobic. I tell them exactly what is going to happen when they try to pack me into those small tight spaces with one of those helmet things wrapped around my head. I tell them quite clearly in words that are short and (occasionally) salty. I can also employ some pretty fancy medical terms I have picked up along the way while clawing my way out of their devices. And they STILL blow me off. It’s not Maura. It’s not you. It’s them. Medical professionals have a hard time understanding that the patient know (or in your case, their parent) knows a thing.

  7. Sunshyn May 5, 2014 at 2:13 pm #

    Why aren’t they doing a home 24-hr eeg?  Yeah, sure, they gotta put the wires on. And then the cap goes on, and you go home.  And they get a real result.   Never knock on Death’s door. Ring the doorbell and run — he hates that.

    Sunshyn Sunshyn’s Daydreams – goin’ where the wind goes… http://www.sunshyn.net (ask me for the password)

  8. lexiemom May 7, 2014 at 12:01 pm #

    You were the one who was perfectly lovely, not the nurses. And it is NOT just special needs kids who will or won’t be cooperative on any given day, especially at a medical facility. I should think the medical staff at a CHILDREN’S facility would be aware of this! Good luck on your next try.

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