Monday, August 31, 2009

So...Let The Positive Energy Flow, Brutha!

I promised some people in e-mail, in follow-up comments and even via phone that I am going to approach today differently. And thus begins the keeping of that promise.

It's around 8:17 AM as I clack this. Jen got a GREAT night's sleep in the hospital last night, can you believe that? She feels rested. I got a solid near 7 hours last night. Very much needed. Bennett slept most of the night.

I arrived in the room to find both asleep, and Bennett looks good, his swelling is still there but going down some. Time will tell today whether he will be more or less out of it than he was yesterday, but I am guessing that he will be less out of it. Call it hope, call it a hunch.

We need to discuss medications today with the Epi's when they do rounds and also how his EEG looks. BTW...if you want to not go crazy watching EEG's in the room while your recovering child is hooked up? Turn off the monitor. I didn't know you could do that, but you can. I did last night, made a huge difference for everybody, and I am not turning it back on to even peek.

Not that I don't care, because I do. Very much. I'm his father. But I can't do anything about it so I am not going to dwell on that and I am going to just go with my gut and the advice of friends which is this: his EEG is gonna look like shit for a long time, don't sweat that. I won't.

Let's talk seizures. The last seizure cluster I witnessed myself, in person, was a monster 20-minute set on Thursday morning, just before he went into the operating room. Then on Thursday night, he had a 20-minute set of clusters Jen was there for. Friday night, he had a 4 minute set.

Since then? Zero. He's had some staring episodes and the chaotic EEG, but the seizures themselves, the herky-jerky, epileptic movements, have not been seen since Friday night.

I will not be running about declaring 'SEIZURE FREEDOM' in the streets. I am going to be positive, but I am also realistic. I'm not even sure the term can apply...even to life itself. We can ALL have seizures, for many different reasons. What I will say is that it is DAMN nice to have a couple of days go by with no seizure clusters. That, my friends, is a very, very good feeling. Dampened, sadly, over the weekend by yours truly, who was having some emotional control problems.

Like I said, we are on an ongoing journey, and this is but one part of the greater whole, but it is worth letting a giant toothy grin take hold for a minute or two.

As I was writing this, Bennett sat up in his crib. From that point, around 8:20-ish, until now, he has smiled, babbled, sat up, stood up on his own, and then we even walked him down the hall after putting shoes on his feet. He was a bit wobbly, but he did OK. No zone-outs WHATSOEVER. At least for an hour or so here, he has been the Bennett that I remember.

Clearly HE wants he leads off, we'll see what the Epi team says when they round. I still have not turned on the EEG screen nor do I intend to. I'm done with that for a while. I refuse to be speculative today or pick apart every little detail. We'll discuss all that at rounds. Good news aside from that right at the time of the writing of this is that he is off IV fluids. The boy is eating and drinking.

As many people have reminded me throughout not just this past week but since February, this is a very long, very difficult road, and we are far, far, away from the end. But for me, today, the scenery looks a whole lot better.


  1. Ken...what I would give to have an hour of Trevy! I can hardly remember what that feels like! And even though I am not a positive thinking buy-in girl...this post was SO heartwarming for me. Standing on THIS side of the journey. So I'm happy you kept your word! I'm happy that Jen got a good nights sleep...unimaginable in the hospital! I'm happy that you figured out how to turn the screen off! I'll have to tuck that away for a rainy day. :)

    Here's hoping for more & more Bennett today!


  2. That's great news Ken... you guys have been in my thoughts for the past couple of weeks and I'm glad things are turning around for you. Give my best to the family and stay strong!

  3. What a great post! So glad things are looking better today...for you and for Bennett. And a whole weekend without seizures sure sounds like a good start! Hang in there. Continued prayers for Bennett and your whole family.

  4. What a difference a day makes!!!

    REMARKABLE!!! I am SO happy for you guys....Now you are REALLY on your way!!! Sitting, walking, eating and drinking? WOW!!!

    Guess you made a good decision to turn the monitor off...YOu are right...Nothing you can do about it anyway....My "Ignorance is Bliss" theory again....

    And SLEEP is the miracle drug parents ALWAYS crave in the hospital...It can help SO MUCH!

    What a perfect way to start our week!!!




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  6. A new beginning.From this day forward,as is the gift of each new day.No two the same.Each filled with something different.Sometimes wanted.Sometimes not.But today ... nice start.Things can change on a dime.As we have seen first hand with our children.But often, when that change has been dark and un-welcomed we can easily forget that it can and does change for the better in the other direction as well.Hanging on with the last of our nail beds,clinging and begging for things flipping our children's way is still called ... hope.The body is an amazing thing.It rests when it needs to rest to heal.Zoey was flat on her back,no crying,ever,no nothing for 5 months because her heart could take not one bit more.Her infant body knew the fight or flight already.As did Bennett.He's back.And he will continue to show you the way... which might mean running down those very same halls by weeks end.Happier then you could ever know after reading this.

  7. You all needed that. A little rest stop on the journey to check out the scenery. It's small steps from here out but they are steps. I am warmed by your positivity and I am here if you need help maintaining it.

  8. You may not be standing up and cheering yet but I am.....Woo hoo! Here's to a better day and many more to come!

  9. Whew! Thank God! Great to hear, aww man that's fantastic!

  10. WOOHOO! VERY positive. I know I have never commented, but I have been following Bennett, Sophie and Trevor since and online geeky comic turned me on to Marissa.

    Warm, healing thoughts to you and your family. Wishing you all the best across this huge electrical expanse!

  11. Sounds good! Glad you have your Bennett back this morning. Long may it continue!

    I know you don't want to jinx it, but no seizures since Friday is really great news. If nothing else, it's the longest he has gone since all this began, right?

    Thinking positively, right along with you.

  12. Congrats to you for taking back the reins on this journey. Focus on the positive and what you can do to make things better, including mentally better.

    Congrats to Bennett on gettin gup and around and eating and drinking. All bigs steps to him going home.

  13. I'm very happy for you and your family. Good days are the best! My hopes are that you continue to have more good days.

  14. Wow. Awesome news. No profound words...just really happy that your waiting was rewarded, even if just for a while. We really are incredible creations. Delma has people calling her for updates now...(she's the "friend" person in our family). I will make sure they don't stop praying, but that they rejoice with you a bit as well. I hope these "three steps forward" nurture your hope during any possible future "two steps back" Bennett may seem to take. God bless Bennett (and Ken, and Jen).

  15. And flowing it is!!

    So very glad you've turned it around (and Bennett has too it sounds like!)...

    Hoping these moments this morning set the tone for the rest of your stay there.

    Somehow, concentrating on the positives seems to make so many more visible.

  16. You may not be ready to proclaim total seizure freedom yet - but do continue to relish every hour, every day you have with no seizures.

    Enjoy those walks in the hall. all of those smiles. Soak them up! Hurray for eating and drinking!

    Hurray for so many things. I am soo excited for you guys.

    I hope today has continued to be another good day. Can't wait to see a few pics of Bennett up and playing. Or even better - the note that you guys get to go home. (I know - you probably still have a few days, but here is to hoping home is on the horizon!)

    And of course - prayers that his seizure free days continue.

    --Keri (from the IS Board)

  17. Ken, I'm so glad that Bennett is doing better today! What happy images I have in my head of you all walking down the hallway.

    Makes me want to go home and hug all my girls a little closer and tighter.

  18. See now I just feel like spanking you, but you being you, you'd probably like that!

    Trust us sick people, I'm not an IS brother, but I know more about the human brain than must, unfortunately because mine suck, and it's something that take a long time to heal, forget the EEG, and focus on all the good things that have happened since you turned the bloody screen off.

    I'm almost 33, and I never had brain surgery, but I never had a 100% EEG, because I have an electrical activity too high for a human brain (something that made my hair fall off), and also I have very high Alpha waves, though no on ever explained to me what that meant, just that it's unusual.

    Bennett is getting better, from what you described, he's REALLY getting better, and that's all that matters.


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