Monday, July 20, 2009

Right Around the Corner

I'm already full of nervous energy.

This week, on Thursday, we head up to Cleveland and on Friday morning Bennett will be admitted for a very extended VEEG (Video-Monitored Electroencephalogram), a high-resolution MRI (Magnetic Resonance Imaging) and whatever other tests are considered necessary to present Bennett's case for review with the surgeons and doctors there to determine his candidacy for surgery.

If they decide he can have surgery, we then have to agree and then figure out when to get it scheduled. If they decide he is not a good surgical candidate, well...then it's back to trying more medications, Anti-Epileptic Drugs that generally, by this stage in a journey like this, have a VERY low chance of fixing the problem.

We've booked the hotel, determined who takes which nights in the hospital room with Bennett and Carter will be staying with his Aunt Mandy, this time at her house (previously when we went to Detroit for a 3-day stay she came down here), since via a circuitous route we can pass through Akron on our way to Cleveland and drop Carter off.

Can't sleep. Appetite is off. I'm definitely feeling it. Something between a tingle of excitement and a heart-thumping fear. Can't describe it. Never felt this way before about a stay at any hospital...maybe because I knew at those times it was sort of a step along the way. A stopping point on this journey. This visit, this week, is still just a stopping point, but at the end of it lies a fork in the road, something we haven't had to anticipate before.

This week will be difficult for me, if the churning and whirling and topsy-turvy waves in my gut are any indication.

I was a rock, a stone, a pillar of strength when we went to Detroit. I had to be, Jen unraveled a day or two before we were leaving. I hope she doesn't in the next few days, because I think, though I can't be sure, that I might need her to be the rock this time around.

I think I'm also nervous the same way that she was last safety net and it has me spooked or something. Last time, we paid to have her parents come with us as back-up. No such back-up this time around. Anyone who is familiar enough with Bennett to be back-up is unavailable. It's gonna be Jen and me...pretty much on our own. And while that didn't weird me out so much last time, it does this time.

But...I'm just gonna have to get over it. Plain and simple. It does tell me something though, this situation. I need to get more people familiar enough with Bennett and what his needs are. Be a good idea to have more options I think.

It's Sunday as I write this. Jen spent the weekend up in Akron with Mandy...a sort of 2nd Birthday thing for Carter. Some Water Park adventure. She says she has photos. Can't wait to see them.

I spent a lot of this weekend trying to stay mentally occupied. I went through tons and tons of computer files (part of a large organizational project). I cleaned the garage. I half-assed it though, frankly I need some help to move some shit. I wrapped up some junk I'd been needing to ship. I went to ToysRUs to buy a stove shield and a gate system to keep Bennett out of a problem area in the living room. Went to Best Buy, bought Reservoir Dogs (my copy got fucked up) and watched it, though I have seen it many times before.

Any time I stopped moving, stopped filing, stopped cleaning, stopped erranding, stopped watching mind would start to fast forward and the anxiety would start to creep in and take over. All because of what lies ahead in a few days.

Yeah...gonna be a REALLY difficult week. Again.


  1. I know this is blasphemy for coffee drinkers, but - have you thought about cutting down on the caffeine? Made a pretty big difference for me. If you can block the adrenalin you effectively block the anxiety. Believe me, I know it's not THAT simple, but every small step is still a step.

    I don't want to be that guy that offers all kinds of advice that you probably already know, just thought I'd throw that out there. Do keep in mind that you need to look after yourself first and foremost, or there's no way you'll be in any shape to look after your family. Good luck, buddy.

  2. I'll be praying that it goes well for Carter in Cleveland on Friday and for strength for you and Jen.


  3. Ken, I have faith that no matter what, you and Jen both will be a rock when needed this week.

    Sending prayers and good wishes that you get the answers needed for Bennett this week.

  4. I am nervous right along with you.

    I read this and come to the conclusion that I should hope that Bennett is a surgical candidate. Is that right? If so, that's certainly what I'm doing.

    And in the mean time, I hope time passes quickly until Thursday.

  5. Oh hon...I am SO right there with you. Which is why I am secretly happy that Toby's had SO much baseball. And Bibi's coming to town. And we've had other life fill up the thinking void. Leaving me with not so much time to spend dwelling. And guessing.

    Love you guys...everythings gonna be okay.



  6. Know that you are never far from my mind, Ken. I wish I were closer and could help out, because I would in a heartbeat.

  7. I'll be offline most fo the week, but I will be thinking of you! I hope Bennett does well. Make sure you remember to bring shirts that BUTTON.

  8. Ken, I put so much energy into focusing on the first surgical visit and the subsequent testing thinking that I would get a single answer but it was as clear as a magic 8 ball after the first surgical conference: "confused, ask again" "spin me again and I'll tell you" "cannot predict at this time" We got a list of tests from the first surgical conference. We did those tests and then they ordered more. The second conference recommended the surgery. We did set a date for surgery long before the second conference just to save on delay. Don't put too much hope in getting a definitive answer from any visit. It will kill you if you don't. You don't need that kind of stress. See it as another visit in the quest for answers.

  9. Hey my friend...You know what we will be doing a lot of while you are there. How about you make it easy on me and tell me the name of the hospital. I'll find out anyway. I won't take "shouldn't, don't, won't, bla" for an answer. I know you know you have to let the helpless followers do SOMETHING to make ourselves feel useful/helpful.

  10. I hope all goes well for you guys this week. I know, that no matter what anyone doesn't help. But just know you guys are in my families thoughts & prayers. I know its tough, and everything seems to suck at times lately. But remember it will get better, this journey we are on is for some reason (I'm still trying to figure it out completely) but I believe this.

    Melanie & Big Boy Daniel! ;)

  11. Suzanne:
    I actually have cut back quite a bit on the caffeine. Not as much as I need to, but a heck of a lot more than I ever tried to in the past. It’s good advice, no need to apologize for it.

    Thanks dude…is this stvnhthr Steve? Sup?

    I dunno, Jen had a pretty intense anxiety attack yesterday. She may need to get on a stronger med.

    Yes, we are hoping surgery becomes an option. It is our belief based on the stats of everything we have heard and read that this is his best shot for seizure freedom.

    Yeah, and I really swim in the muck too, don’t I? Always been a part of my nature. If things are crap I generally spend a lot of time NOT distracting myself from the crap. It’s weird. Then again, so am I.

    I know that you would.

    Gotcha. WAY ahead of you on that. I also have a few things I’m gonna do for this one that I didn’t do for the last, all to make him more comfortable.

    Don’t get me wrong, I don’t EXPECT anything definite at all. Just WANT it. :) You said it best…it’s thinking you are going to get the carrot and instead you find a sign pointing you to where the carrot MIGHT be. Always liked that analogy.

    We’ll be staying at the Inter-Continental Suites Hotel. Not sure which building we are going to be in at Cleveland Clinic, so hotel is best bet.

    Here, I’ll make it easy ya overly generous bastard:

    Intercontinental Suites Hotel Cleveland
    8800 Euclid Avenue
    Cleveland, OH 44106

    Nope, you’re wrong…sharing those thoughts with me DOES make me feel better, and does help. Nyah, nyah! :)

  12. If you go from carrot 500 miles in some direction to carrot 15 miles north east that will be a good outcome. And of course if you go from that carrot right here in my hand then I will crack open the champagne.

  13. Well, I guess y'all will be on your way tomorrow....I try hard to put myself in your's and Jen's place....So I will NEVER say I totally understand what this trip means....We have only had the little two hour EEGs and basic CTs and MRIs because of the difference in the diagnosis...

    But reading about the experiences of these other parents and this testing makes me TRULY BELIEVE that you guys will get through this just fine...If one of you happens to get weak, the other will step up...That is what I have seen from afar of your marriage...

    Try and take some comfort in knowing that all of your fellow bloggers are there in spirit and "willing your family on" to get through these next few days...

    We love your family!

    Good luck, and keep us posted when and if you feel like it...


  14. I've been depressed, I've been on a 3 day vacation, and arrived home even more depressed, so I've been late at everything. Keeping up to date with you is one of those things that I was late at; but I'm here now.

    By the time I'm writing this you guys are probably on your way to Cleveland.

    It really sucks that you guys don't have a "safety net" this time around.

    And neither one of you, needs to be a rock, and yet you both need to be "the rock". Bennett will be taken care of by the doctors, the Lilly's now need to take care of each other this time around.

    I seriously hope that Bennett is a surgical candidate, because generally it's the best way out, the meds work too, but are more complicated, and need more maintenance.

    Now don't you or Jen bottle up anything, if you want to cry, cry, if you want to scream, scream. No secrets, no holding back. That's the best you guys can do for yourselves, and for each other.

    Hope to hear news soon, from this new battle.


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