Thursday, August 27, 2009

Good Night Bennett...

This is how Bennett looks tonight. He is in the PICU with Jen, and I am in the RMH just waiting for some sleep med to kick in to settle me down enough to get some z's before heading back over.

Trust me, I'll do a picture marathon, have huge thoughts and stories about how it all went down, but this shit, while it's going on? Wipes you RIGHT out. I am zonked. Can't tell you how many tears have streaked down my face. Tears of sadness, tears of hope, all kinds.

Anyway, what a day, huh? Good night Bennett...I can't wait to pick you up again and see you smile. And Carter? Miss you too bud. A ton.

Until tomorrow...

Oh and Holli, not all surgeries need the grid placemets long term, Sophie had a unique experience, and required grids, other cases do not. I think that Sinead's girl Emma did not have the grids but had a study like what Bennett got.


  1. holy crap. I am so relieved for you and I'd really love to know how he's going. Thanks for keeping us all informed. Thinking of you guys.

  2. He looks great to me.....Hoping he has a good night and that you get some sleep too. I believe Telmo mentioned it earlier, but I just want to reiterate, try to sleep while he is still sleepy. Watching is great, but it doesn't get you ready for the hard work you'll be doing once he is up.

    Thinking of y'all!

  3. I have to echo what Liz said. Sleeping when they are asleep is the way to go. Having spent a lot of time in hospitals, I finally figured out that my not getting enough sleep only made it harder to be there when Taylor really needed me.

    Here's to hoping that's a lesson you never have to learn and Bennett's hospital stays are either non-existant or very few and very far between.

    Still keeping Bennet, you, & your wife in my thoughts.

  4. Finally got a chance to check in on you all from home. Glad to hear that surgery went ok and that they were able to remove the focal point for the seizures. Obviously, I'll be keeping the prayers up for you all.

    Love the picture. He looks so peaceful despite what he's just gone through. Hope you are able to get some much needed sleep. Stay strong!

  5. Well,isn't he a sight for sore eyes?Overwhelming,absolutely.A relief that you are this far,most certainly.And tomorrow will come and with it,hope and progress and forward moving.I,due to my type A personality,never took that wonderful advice of resting while their resting, during Zoey's various long hospital stays.After this last stint,I wish I had heeded that though as I am blearily finding my way through some serious Post Traumatic Stress stuff ... sleep would have and still would help that.Midnight or one doesn't cut it so please,both of you REST WHILE YOU CAN.Continuing prayers for the little fighter.

  6. Hope by the time I'm writing this that you and Jen had a chance to take some rest, because I bet Bennett is still doing just that.

    No on likes to look at that picture because we all begin to see a bionic kid, but he's not going to be that way for long, and all those tubes a wire are there for his benefit, they just aren't pretty to look at

    And let's face it (still being cautiously optimistic) the brain cutting part of this trip is over. Yay.

  7. :( Sleep tight lil guy. Im with all those other gals. Gotta go feed the Grumpy Madie...:D

  8. That picture brings out the Bristel in me...and makes me wanna just run there and cuddle him to pieces!

    Ken...I can only imagine the torrent of emotions you stormed (and are stroming) through. My own have been running the gammut. I've just been able to spill them verbally. Which means...once you do...I'll probably just link over and let people read my thoughts as shared by you! ;)

    Hope your sleeps meds swept you aways to happy dreams...


  9. Good morning Lilly family - I hope you all slept well. Those next to Bennett and those doing their part further away.

    Yes Emmas surgery also was single stage with a softgrid for mapping. Since the abnormality is not easily visible they correlate the grid information with the MRI information before resecting the tissue.

    They wrapped Bennetts head - how nice. They left Emmas wound exposed. My pictures are a bit gory.

    The more energy that returns to Bennett the harder it will be to keep him safe so take the advice and rest as much as possible now.

  10. The beautiful photo is a relief....As has been said, he looks like he is resting so peacefully! Exactly what he needs...And you guys, too, which I'm sure must be impossible....

    Other than that big bandage, your boy looks just like our precious Bennett! WONDERFUL!!!!

    Shut your eyes WHEN YOU CAN....And update when possible....Y'all have come so far....


  11. Thanks Ken, I felt kind of silly for asking...I had about four local churches praying for a two part surgery!! Don't ask me why I didn't ask you sooner. At least it was over and done with relatively quickly instead of being spread over days.

    By the way, how is Jen doing?

    Hoping you got some rest and Bennett is resting peacefully himself.

  12. He is beautiful. Despite the gauze and the wires, his spirit is still shining through. What an amazing little guy.


  13. lots of positive thoughts being sent your way.

    Lisa & Kali

  14. Geez Louise! Well considering... he looks really good. Hope it's pie from here on out, dude.

  15. Thinking about you and your family. Checking in with your blog as often as I can. I feel for you, Buddy!

  16. I'm so glad to hear it all worked out. I hope you two have fun today.

  17. He looks good. Glad you've made it through this hurdle.

    Don't forget Day 3 will be HORRIBLE - even when Becca had the EEG electrode surgery Day 3 came and BAM - the swelling hit. The pain from the swelling hit - and her surgery wasn't even the "Big one" (that we now can't have because of what that surgery showed).

    *hugs* You know Bennett is in my prayers!

  18. Good luck with the MRI today. You might find that Bennett is less co-operative with sedation today. It's supposedly because the constant epileptiform activity presurgery changes how they perceive pain. So he might be difficult like a normal kid his age. That is the normality we crave though. Best wishes.

  19. Glad to hear things are going well so far Ken. Stay strong and stay positive.

  20. I think he looks great and as adorable as always, although as his parents it it heartbreaking I'm sure. Hope you all were able to get some rest last night. You remain in our thoughts. Tell Bennett to rest easy and we send you all strength as you continue to support his recovery. Take care, Monica

  21. That picture brings back a flood of emotions. I don't even know what to say to you right now because I know how hard these next few days are and I know there is nothing I can say to make it any easier. But I want you to know that I am hoping and down on my knees begging that things are going as well as they can possibly go for Bennett. I can't stop thinking about you all.

    Regarding grid surgery...Sophie had it because they could not pinpoint the focal point prior to surgery. A lot of the data in an EEG gets lost when it gets transmitted through the skull. So the grid is a lot more accurate to pinpoint the focal point. Between the EEG and scans, there was not enough data to definitively decide what areas to remove. After they collected the data through the grids, the team met to determine what they were going to remove. And still there was a last minute decision made in the OR.

    Just curious...did Bennett have an IV started in his looks like that in the picture.


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