Sunday, August 30, 2009

Not a Very Good Day

Bennett is recovering from the surgery but slowly. He did not have any seizures last night, and they have him on a drug called Fosphenytoin. Now, you'd think I'd be jumping for now about the no seizures thing, but this kid has got am EEG that is just off the charts chaotic right now, most of the time.

Yeah he isn't seizing, but that whole chaotic EEG hypsarythmia thing still seems to be here. Is that to be expected as his brain heals? I don't know. The Epileptologist wants to keep monitoring him to see how he responds, I get worried about that kind of talk.

Bennett has been SUPER non-responsive, a few moments here and there, but there are times he looks totally checked out. I think I was spoiled by that four hours of awareness. Since then, he has been mostly zombie-ish.

Still has a low grade fever, still is on leads, and as of tomorrow, Jen and I will be alone with him here. That's gonna be the toughest, because we don't really have answers on why the EEG is so chaotic, no one does.

Truthfully? I am probably being OVERLY pessimistic. But That's where my head is at today. Tomorrow, it might now be. I hope it isn't. He's also finally really swollen. That was another bullet I thought he'd dodged.

More later. Gonna leave he room and let Jen take a nap.


  1. I know its hard now - but remember - its always darkest before dawn - and Bennet's dawn is coming! Dawn is coming for all of our seizure kids. We can't give up that hope.

    Have you been able to hold him yet? I know you don't really have time to answer all the messages you get - but please give us an update on that one if you can. I know even when Rebecca had the Intra-cranial EEG surgery not being able to hold her was hearbreaking. She wanted to be held as badly as we wanted to hold her.

    The pictures of Bennet look GREAT! His suture lines look awesome.

    Rebecca and I send our love. Rebecca sends lots of kisses to her little friend.

  2. Keri:
    Yeah I can hold him, not exactly pick him up cause it puts pressure on his leads and such, but I can lay beside him, snuggle and kiss on him. There are a few very brief moments where he seems to respond, but there are too many times that he just ain't there, and that is scaring the shit out of me, among other things.

  3. Hugs Ken. I know it will get better. Don't ask me how - I just know it. I have no comparison for you because our team wanted to wait six weeks before getting a baseline EEG. They said anything earlier would not be representative. I hope they were right and the chaos settles soon. Best wishes.

  4. So sorry today was so rough. I totally get the pessimism. I would probably be there too right now. It is hard to just be sure that the positives are just around the corner when you have all those negatives right there in your face. Hopefully soon much of this will be forgotten or just written off as the stuff that you knew *could* happen, but that you hoped wouldn't. And you'll get to see the benefits that you have been waiting for.

    Sending love and prayers,

  5. I'm really sorry to hear that the EEG is not looking good yet. Maybe Bennett's brain is still adjusting to the changes, and hasn't had a chance to re-wire itself yet? I don't know...I'm sure you have thought of a million possibilities. Things are going to get better. One way or another, they will. I hope it happens tomorrow.


  6. Ken, Bennett literally had brain surgery, you know what that means cutting the flesh off the skull, cracking the bone open, opening the dura matter, and last but certainly not least, cutting out a piece of his gray matter. Well the brain doesn't have pain receptors but everything else before you get there do, and I bet Bennett is/would be in real pain, and they must have him doped up to the high heaven, so it's probably normal that he's sluggish.

    Plus I do believe the "slowness" is more than normal. When you cut a finger the capillaries get severed and as much as you try to put the two pieces back in the same place, they never really match up, so they end up having to reroute themselves, and create new capillaries and blood vessels.

    Now his brain got cut too, and just just a straight cut, a piece of it was taken out, so it also needs time to reroute the communication on the electrical impulses, and if there is anything slow in the human body is nerve cells.

    I know it's trying and disappointing to see him like that, but you need to give him time.

  7. You are all absolutely right. As of tomorrow I am pulling my shit together. I intend to go to bed and wake up with a new resolve. I am walking into that hospital room with a be strong.

    Temporarily. I have treated myself poorly and not handled my emotions the way they need to be.

    That changes tomorrow, and that's a promise.

  8. Oh, I think you have been reacting VERY normally to all of this nightmare...And that is what it is, I am sure....Just a nightmare from Hell...

    I would be just like you...I have a tendency to be VERY pessimistic when going through a crisis w/Colby...I think it is one of my protective devices, so I won't be as let down if the worst happens (Ha!)....Anyway, that's why I do it...Also because I am downright scared to death....

    It is hard to remain positive...No one expects you to...I DO see some rays of sunshine coming through your posts. though...And I think we will see more and more as the days progress....

    Can't wait to hear more....

    Take care...


  9. Now there's the man I know and love.

    More power to you.

    But from one headcase to another, I know it's easier said than done, and things like these hit at our very core, if they were happening to us, it would be as big a deal, as it is when they happen to someone we love.

    But in time of need, we are required so soldier through, as soon as that kid is home, and being a pest kids his age are, you have the right, to crumble into the fetal position and stay there for some time, but first we need to test to others. We're fixers. We can't fix our lives if they depend on it, but by George will do whatever it take to fix anyone else around us.

    Go to bed, and awaken as a temporarily renewed Ken Lilly. *pixie dust*, *pixie dust*

  10. @Cindy: So are you the kind of woman that: "Expects the best, but prepares for the worse"? Because if you're like that, welcome to the club sister.


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