Monday, July 27, 2009

Weekend at Cleveland Clinic Update 5: 07-27-09

It's Monday afternoon, and we should be arriving, right around this time, back at our house. We ain't.

We did get discharged today though. Bennett is no longer enduring EEG Hell. However, Bennett's 'review' and presentation of all his test results and evaluations and so on was, is, scheduled officially for August 25th (yeah I know FUCKING HELL I hate more MOTHERFUCKING waiting but more on that later).

One piece of the puzzle that they want to have completed, the last piece, is a Neuro-Psych Evaluation. Here, they do that before they do a surgical presentation. Don't do it everywhere, here they do. MAINLY because of his age, they say, they want to get a baseline study down of who he is and what he does before they go cutting away at his melon.

Soonest we can get an appointment for that? Mid September. Yeah, that's exactly what I said.

Anyway, we check out of the hotel, or Jen does after going there to shower (I stay in the hospital room with Bennett) and she makes the arrangements to have all the bags I packed last night taken down and loaded in the car. We'll pick the car up after Bennett is officially discharged.

Jen comes back, we get the leads off of Bennett, hang out. Waiting, waiting, waiting, you know how discharges go. Then the nurse comes in and has news.

Anyway...somebody somewhere pulled a string. They got us in for a Neuro-Psych eval tomorrow instead of September. Someone called in a favor. No way are we gonna NOT take it, so we agreed to it, discharged from the hospital, carried our hospital bags and Bennett (we forgot his stroller, I may have forgotten to mention that) the 2 blocks over to the hotel.

Then asked them to check back IN to the place.

Same size room. Dramatically different rate (boy people can really fuck people in need over, never ceases to amaze me).

So here I sit, typing, while Jen takes a nap with the boy.

After getting in to this room, it isn't like we can really unpack, we just sort of unload the bare minimum of what we need. And I overpacked, 2 extra days worth, just in case. Jen packs per day, never overpacks. I have clean clothes to wear, she does not.

But then we realize something. Hey, they started Bennett on a medication two days ago, wrote us a scrip, and we don't have any of this medication and are not on our way back home to any kind of pharmacy. OOPS.

SO...pay another 10 bucks to access the internet at this hotel so I can see if there is a Meijer or Wal-Mart nearby. I know there is a CVS, but hell, since I have to have the car pulled out of the garage (they only do valet parking) maybe we can find a place where we can also buy a 15 dollar stroller. Be worth it rather than carrying Bennett across the Cleveland Clinic Campus. And Jen can at least buy a T-shirt or something that's clean.

Found one, wrote the directions down, headed out. I think it's bullshit I gotta spend 16 dollars a day to park my car in this hotel's fucking garage since I am paying for a room, But THEN the valet guys expect a tip coming AND going? Ridiculous.

We're back now obviously. Jen is super-pooped. Bennett is napping now too, but holy crap he was giggly and playful and jabbery all afternoon, SO happy to have that crap off his head. Of course, all the glue goop and red pen marks and stuff make him look like he is starring in a sequel to Outbreak, but he's happy, and that is important.

To me, anyways.

So that's our story for today. I haven't had much of a chance to respond to any comments in earlier posts, answer e-mails, etc., so sorry about that. Hell, my work is all backed up and I guarantee my house stinks, I probably left some dirty dishes in the sink when we were scrambling to get out of there last week. And we have my parents coming in at week's end and need to get some stuff ready for that.

But how in the world could we say no to an appointment tomorrow? We couldn't. Not if it meant putting the surgical presentation into September. August 25th is bad enough.

Which brings me back to the waiting thing. I get that things take time, I get that there are other kids ahead of us in line. But I now have to basically go yet another month before we might get another step further in this process. You were right Sinead, you were so damn right. So another month of watching Bennett seize, trying a new, dopey style medication, weaning another...just more of the same.

I'll get through it, doesn't mean I won't bitch about it. And yes I know, of COURSE it could be worse, could always be worse. And believe me...I do appreciate where we are, I really do.

So that's the story for today, what time is it now, nearly 6? This day felt particularly long. I'll probably do a full recap at some point cause these updates have been very rambly, but gonna sign off for now and maybe watch some TV. I am FRIED.

Oh and sorry no new pics...my external hard drive is in one of the suitcases and I don't want to go digging for it.

OUT...


10 comments:

  1. Sometimes when I spend a weekend away from home or something like that, I don't even unpack, I just live out of the suitcase. So that's totally normal for me.

    And you guys are right, no way you can pass up an appointment tomorrow, it's basically two months before what was available, and after August 25th, there might be no more reasons to push anything back, which there sure would be if you'd only have this appointment in September.

    Don't get me wrong, I love September it's the month I was born in (but I don't hold that against it), but getting something now, or waiting until them? There is no question.

    Sure people screw each other as much as they can, especially when it comes to money and hotels are experts on that. But maybe you've heard the most recent controversy in the business, at the SDCC: Mattel selling to retailers on preview night, and without a limit. So a scalper bought 37 books, and it selling them at 3 times the price. But doesn't that sound small, compared to your issues now?

    I may not believe in a lot, but I do believe in Karma, and they'll get theirs. And so will you. (But in a good way.)

    I seem to remember you were also born on September, were you not? Maybe Karma will give you back your son seizure free around that time.

    Sure that's a wish, I know it's still a long way off, but hey when you started out you didn't even know what IS was, and what his seizures meant, and in less than a year you're a pro. So maybe in the great scheme of things, surgery (or whatever) is not that far off. Everything is relative.

    Don't for get to steal everything you can get away with from the hotel room. Hope the appointment goes well tomorrow, and that you have a nice drive back home.

    I know you want to see Carter, live and in color again.

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  2. There are times when I don't like being right - this is one of them. I'm sorry about the delay. And it's still an effin sign for a carrot but the carrot is a bit closer. I'm glad you got the appointment for tomorrow. It's better than the alternative.

    You know hotels can be such a rip off. I try to just stay at holiday inn express or Fairfield inns cause they include breakfast, never charge for Internet and offer free parking. The more expensive the hotel the bigger the add-on rip-offs $29 concierge fee..…etc. Sorry no one with a sick child deserves that. Way to go hotel!

    Hope all goes well tomorrow. Ask if they can schedule a tentative surgery date pending conference approval.

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  3. You couldn't say no...

    ...you did the right thing. But you know that. Sleep it off now. And enjoy giggly Bennett when you're not.

    ...danielle

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  4. Been reading every day.Looking at Bennett and his smiley face and knowing at the same time that the days hold so much more than the pictures we see.Hating you all have to watch him endure this but simultaneously hoping that all roads are leading to seizure freedom.Sounds like they are, it's just taking alternate,frustrating,crappy turns along the way.But man,seems finally to be within grasp.Keep the faith,in whatever you need to.Mostly Bennett because he ultimately leads the way.

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  5. Hey my old friend...wish I was there...we could go out and have a quick beer. Been missing you...nostalgic and all. I know, your life is crazy and you don't need company.

    Our Sunday school class prayed for you all this sunday. It was cool to hear your name. Human connections are so....human.

    The words you conveyed from the Doc. yesterday are promising for surgery...though I can't imagine the can of worms that opens in your mind. My two cents....I have case after case of child neuro-surgery success stories in the textbooks I have around (psychologically, physically, intellectually, etc...)

    With you in as many small ways as I can be.

    R

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  6. Still on track, I see...This was great luck that you were somehow granted the appt. for the eval tomorrow...One less thing to have to do later....

    It all still sounds so promising....Hopefully y'all will be seeing Carter tomorrow and be sleeping in your own beds....

    Will check in tomorrow....

    Cyndi

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  7. Best of luck today - you must be exhausted. It will get better. I was thinking that they were to present Bennett's case today - why did they decide to wait? I hope the new drug works miracles. You'll feel better when the Vigabatrin is totally weaned. Hang in there. Hugs to all of you. We'll be on vacation August 25th but I'll be thinking about Bennett and hoping you get the approval you need. By the way, ask them to review pre-vigabatrin EEG data to see if it is more focal.

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  8. Oh yes, we stayed at that hotel last week (International Suites, perchance?)...so annoying.

    Glad you got the last minute neuropsych eval, and I agree, the waiting part is so hard. We had my daughter's week of testing back in April and here we are still waiting...of course for different reasons, but still.

    Glad you get to go home today!

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  9. Hooray for people pulling strings. When Charlie first started seizing we had to wait two weeks to see a neurologist because it was the holidays. Made me want to die.

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  10. Waiting does suck, but the eval is one less thing you'll have to wait on thanks to someone with a heart pulling strings for you!

    I totally get the hotel rip off too. There's only so many that give you a medical stay discount. It should be all that are within a certain proximity to a hospital. My thoughts anyway.

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