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And now that I’ve had my moment of relaxation…

30 May

How about that EEG?

Oh…wait…

So apparently, if you send a plea out on The Twitter that you’re wanting to feel the love from a certain children’s hospital, and oh, yeah, your blog address is your actual name (cue stalkers), then you will get phone calls from said children’s hospital from patient relations, and then spend the rest of your week fending off phone calls about the Great Scheduling of the EEG 2014 – Part Deux!

Of course, it’s still not scheduled.

It’s okay, I can’t do anything but laugh about it.

See, Maura – being so very uncooperative and not willing to lay down – now must be scheduled for a sedated EEG.  I knew this could happen, and was braced for it…until the message that said “We’re trying to find free time in the OR.”

Um…

what?

Of course, this was in voice mail format because I dared to go have a life and was busy being tortured working with my personal trainer and friends.  So I was listening to the voice mail going “OR?  Like Operating Room OR?  What the heck are we scheduling???”

When I talked to a real person the next day, who once again brought up the OR, I said “Um…okay, so why an OR?  We’ve never done a sedated EEG?  Is there someone I can talk to about how this will all go down?”

She offered to set up a meeting with the anesthesiologist – which I said no to for two reasons.  First – the hellish traffic getting in and out of Seattle.  Second – they charge $255 every time you walk into the building, a “facility fee” that is not covered by insurance.

Also, I didn’t need to talk to the anesthesiologist, I just wanted a run down of what would happen.  So someone from EEG called to fill me in on all that.  The reason for the OR?  It’s where they keep all the stuff.

Ah…okay then.

I was also offered the services of the Child Life Team, to come in and explain things to Maura.  It sounds like a nice idea but honestly, Maura’s not going to get it, and they won’t have enough time to get to know her well enough to explain things to her in her terms.  I will have them available the day of, just in case.

But we can’t schedule the date yet because it all must be run by a supervisor, who happens to be out of town until next week.

Of course.

The tentative date?  Is our wedding anniversary.

Alrighty then.

This is my life people.  I swear, I’m not trying to do things the most convoluted way possible.  It just happens like that at times.  If there is a most ridiculous way to go about something, I end up on that path.  So instead of going in, them sticking stuff to her head, watching a video and there, EEG done…it has now turned into this comical saga of complication, blog posts, and Twitter exposure.

And somewhere in a break room, at a local children’s hospital, my picture is plastered on a wall with a warning label.  LOL!

 

P.S. – everyone I have talked to at said children’s hospital have been nothing but nice and professional and willing to listen to me.  They are trying.  I guess they’ve just never encountered such special people like ourselves, who always end up straying from the usual pathways, lol!

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7 Responses to “And now that I’ve had my moment of relaxation…”

  1. Carol C May 30, 2014 at 3:30 pm #

    I just want to tell you how luck Maura is to have you as her mother. (I think you already know how lucky you are to have her)

  2. steevbeed May 30, 2014 at 6:13 pm #

    Hang in there.

  3. Laurie May 30, 2014 at 9:01 pm #

    Been there, done that. My little one is now 30 years old. She had many tests when she was little. Hugs, blessings, and prayers.

  4. franhunne4u May 31, 2014 at 6:33 am #

    Bad idea no. 1 – Appear online under your real name – Don’t you know the internet never forgets? Even if Google is know forced to manipulate their search results if you can convince them that your need for privacy is higher than the public’s right for information, that does not mean nobody will ever get to see your real name. How did that hospital come across your Twitter-account? Did they google themselves? Have some other patients googled – and then warned – the hospital? The rules that everybody knows somebody and news travel faster than light is even truer in times of the internet.

    Bad idea no. 2 – If you criticize somebody online, to do that under your real name while using their real name … That is what “nicknames” are for.

    So you see, this kind of shitstorm you brought upon yourself …

    Still I do not understand why other parents, who have different experience with aforementioned institution see it necessary to contact you – your experience differs from theirs – and there is nothing that could change that. No matter how many times they have been treated nicely there.

  5. emcclure2010 June 2, 2014 at 11:52 am #

    I am genuinely blown away that this has been such a challege for them. This cannot possibly be the only time they have ever dealt with this issue! I mean, they are a CHILDREN’S HOSPITAL! Is there some other hospital where all the kids with special needs who aren’t super docile about everything go? I mean, really. I am sorry this has been such an ordeal! But glad they’ve at least been nice/professional this round!

    • phoebz4 June 2, 2014 at 11:55 am #

      I did get a lead to an alternative choice in care centers from another mom with a child with something rare – this is why special needs moms have to network! LOL!

  6. Sunshyn June 2, 2014 at 12:48 pm #

    Why the heck are they not doing a 24-hour home EEG?   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)

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