Repeat Performance.

We’re going back in.  Heaven help us.  As you read this, we have headed back in for a repeat EEG.

Yeah, because the first one was sooo much fun.

Not.

Believe it or not, since I first blogged about the horror that was the EEG placement back in September, we are now returning for a repeat performance.  The EEG is again, the 24 hour ambulatory, glued to the head variety with the backpack to measure what seizure activity there may be during a typical 24 hour period (and I do use the word “typical” with all manner of looseness).

What is happening is that we are (believe it or not) coming up on a six month check up for my son’s seizure medications.  Before that appointment, our neurologist wants the results of this EEG, my son’s complete blood levels tested, and a follow up psychological test administered and scored.  How does that sound for good preparation?  Great for him.  Not so great for Toots and me. But, you know, details… details…

Like actually getting the child through that 24 hours with glued electrodes attached to his head.  Simple?  Oh yeah (insert heavy sarcasm here).  Especially given that my kid cannot stand anything touching his head for more than 3 seconds at a time.  Those cute little shots of him in sunglasses, like this?

No more than 20 seconds after these shots were taken or between shots – those glasses were off.  Hats?  Maybe – if we’re lucky they will stay on 60 seconds before he pulls them off.  Headphones are absurd, as are earbuds.  A comb is torture and water should be branded “water torture” during the shampooing of the hair.  A hair dryer?  I might as well be setting him on fire.

So, laying him down on a table for an hour while tons of electrodes are glued and attached to his head while they blow air on the glue to dry it is, naturally, going to be a picnic.

This time, we are having the procedure done in the same building as our neurologist’s office.  Our neurologist’s physician assistant will be administering the muscle relaxant in the 30 minutes before the procedure commences.  This place really knows what they are doing and I’m hoping and praying this procedure goes much more smoothly than the horrific experience we endured the first time that resulted in this letter.  [As a side note, I did get the obligatory letter back after the conclusion of the hospital’s “investigation” into my complaint. They assured me they intended to perform additional training and review with their staff and gave me other blanket assurances admitting no blame for anything.  I really expected nothing better. It was such a load of liability-avoiding crap in their letter, I never followed up here with their response.  Needless to say – I will not be trusting my son in their care ever. again.]

There is nothing worse than your child crying out for you to rescue him/her from a medical procedure that is causing them sheer torture when you know your child has to endure the procedure for the test results.  It broke my heart when they strapped him down to remove the leads last time while he cried and struggled.  I will not let it happen again no matter what I have to do.

Can you tell I’m not looking forward to this?  I’ve said nothing to indicate my feelings to my son.  I have calmly prepared him for the EEG.  And when I first told him, the first thing out of his mouth was, “No EEG!”  I have promised the carrot – the Hot Wheels Boneyard Bash Crash Set for monster trucks (thanks to Target for putting it on sale today!) which will be opened and heavily played with once the leads are attached and he has returned home.

 They better do this right or I may have to do my own version of Boneyard Bash to someone…  I’m headed in ready to rumble this time.  Yeah, yeah, I’ll be nice – until someone gives me a reason not to be. . .

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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13 Responses to Repeat Performance.

  1. kcunning says:

    Aw, man. Best of luck. Maybe he’s picked up more coping skills since the last time, and it won’t be as bad. Crazier things have happened.

    I remember the tests, when Jake still had all his nerves on the surface. He was the same way. You couldn’t touch him, couldn’t hold him, couldn’t strap him into anything without him going all RAWR HULK SMASH.

    It got a bit better once I could distract him during procedures with his DS. I just had to talk to the doctors beforehand so they didn’t try to take the DS from him. One nurse simply reached over and slapped it shut, and I didn’t know if Jake or I would be the one to murder her.

  2. The fact that LM was so drowsy when they hooked up the EEG leads for her was a huge help… here’s to hoping the muscle relaxer is the missing piece to the puzzle for T!

  3. Lisa says:

    I wish you the best of luck. When Tate had to do the 48-hour test it was brutal…mostly the lead attachment phase. Thinking of you both…

  4. Grace says:

    This one is going to be a piece of cake. A walk in the park. A cake walk. Better yet, a cake walk in the park. (How’s that for mixing metaphors. . .or idioms. . .or whatever the hell they are.)

    I have faith. Or a really bad case of denial. Either way, I truly hope it goes OK. Really.

  5. Lizbeth says:

    Good news is, you’ve done this before. Bad news is, you’ve done this before. Seriously, now you know what goes on and what to expect. And so does Tootles. I’d be buying as much stock in Hot Wheels to keep him happy. Nothing wrong with a dangling carrot. Or 100.

    Good luck sweetie and I pray they don’t see the need to hear you roar. That would be a big mistake. Big, big mistake.

  6. That sounds so hard for both of you; especially Mom wanting to make everything better. I hope this time everything goes smoothly for you. Keeping you in my thoughts.

  7. ElizOF says:

    Take a deep breath and trust it will go well… You are better prepared now than the first time… Prayers coming your way.

  8. Blue says:

    Hope things went well for the little man today!

  9. Teresa says:

    It absolutely has to go better than the last time. That was a nightmare.

  10. Denise says:

    Maybe both of you can get a muscle relaxer? Steve suggests tequila! Seriously Karen, you and Tay are both in our thoughts!

  11. **hugs** I bet it will go better than last time, since you’re both prepared for it, there is the promise of the boneyard bash (for T and from you if need be!! I’m hoping not!), you’ll be really close to the doctor’s office (don’t know why, but I find that comforting), and you’ll get the muscle relaxant. I hope you guys get great results!

  12. blogginglily says:

    I have a feeling it will go much better than last time.

  13. Jen says:

    I’m just reading this! SO relieved it went better than the first time! I have a plethora of videos from a Monster Jam we just went to with Gravedigger. It’s on my FB wall if you want to show Tootles!

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