Thursday, August 27, 2009

Surgery Update 3: PICU

Out of surgery, up into the Pediatric ICU for recovery.

First and foremost? Liz...I am sorry. That's heartbreaking news for me to hear. I hope maybe he was able to give some possible medical solutions to go down. I'll get with you later, but I just wanted to say that I caught your note and my thoughts are with you.

I'm fried, and it's only 4:10 PM on Day Two. Wow.

Nothing in life could ever have prepared me for seeing Bennett after the surgery. Sinead, Elaine you did your best, and I'll always love that you tried. But wow...hard to see your flesh and blood like this. And yes, I am a twisted freak, I took photos. And will continue to.

But back to quick facts. Bennett is out of surgery. Recovering well, everything is stable. He is not conscious, but we sit at the bed and try and talk to him in case maybe it soothes him. We are working on trying to figure out what medications we can give him (non-orally) to stop any seizures that might happen.

Preliminary read on what was in there. They did find evidence of the Cortical Dysplasia, they did find evidence of ganglioglioma, a tumor type that is very rarely malignant. That will be determined through a real pathology exam over the next couple of days. If it is the non-malignant type then the key to whether or not it returns is how well the removal was today. That is something that will be monitored. Another MRI is scheduled for tomorrow, and after that he possibly will be well enough to go to a regular room.

An important key point here. They did some kind of EEG test, sort of like a grid thing, during the surgery. I do not know what that is called but will later. With this test, they were able to positively identify the area they removed as THE FOCAL POINT of the seizure activity.

There's a lot of reason to be hopeful here. There's a lot of reason to be scared too. We don't know if we've beaten anything. Why am I saying this? Because I need to be certain I stress that this is only one stop on a journey and we still have a long way to go. Hell, I don't know if the seizures are gone, what he will remember, I know very very little. So yes, there is reason to be hopeful, but always remember the words of The Wolf.

But I do know that the surgery is over, he is in recovery and he is as comfortable as he can be all things considered. Me and Jen? Tired, stressed, but cautiously optimistic.

Sorry to keep stringing people along, but it's been hard to get access, a lot more goes on that I realized as far as dealing with a day of surgery on your child. And a lot of what you know is what I know, just that he's stable, he's resting and we'll be with him very step of the way.

More later as I can get to it. Apologies for not being able to answer any of the individual comments. But thanks for the support, means a great deal.


  1. Hopeful and cautiously optimistic ... great combination.We continue to send prayers and strength for you all as you take each moment,one by one.Sending your tiny fighter tons of prayers and good vibes as his body heals and recovers.He is a trooper like no other1

  2. Praying for a speedy recovery and no return of the evil seizure monster.

  3. I am so glad to hear he is out of surgery and stable. One step at a time...I have been following your blog and think your baby is adorable. My daughter, Hannah, has a seizure disorder. We live in Dayton, OH. My thoughts and prayers are truly with your little one....
    Marcia K
    Hannah and Blitzen

  4. So glad he's out of surgery and that cautious optimism is warranted. I've thought of you guys all day and am so glad to read this update.

  5. Great news he is doing well and the surgery is over. It sounds positive that they identified the area removed as the "focal" point.

    Yes, there is no real preparation for seeing your baby right after a major brain pale, out of it, swollen, with tubes and wires everywhere. It's not how you want to ever see your child. However, they are so strong and's amazing. The swelling might get worse the next few days, but each day will get better.

    I hope Bennett heals quickly and all continues as smooth. Take care! Bennett and your family will continue to be in our prayers. meghan

  6. Wow, that's a lot to take in. I hope you continue to be strong and that Bennett will recover as quickly as possible.

    By the way, I've been under the impression that this would be like Sophie's (two parts -grids and then removal). I apologize for being clueless here, but it's completely done now?

    Hang in there, we're all here praying for you guys!

  7. We will all continue to be cautiously optimistic with you, but I'm glad to hear so far so good. that is great that they wer able to locate the focus and remove. Praying that the tumor is found to be benign by patho!! I can't even begin to imagine seeing your baby like that post-op, but if in the end the seizures are gone it will be well worth it. Keeping you all in our thoughts & thanks for the updates...I've been itching to get on the computer all afternoon!! Take care & give B a hug for us.

  8. I am so glad they were able to find a focal point. Hopefully this will stop the seizures.

    Unfortunately, my daughter doesn't have a focal point, her seizures go from one side of the brain to the other. Even a corpus callosotomy couldn't stop hers.

    I know what it's like to see your child after brain surgery. Reading your blog has brought back serious deja-vu for me.

    My thoughts are with you and your wife for continued strength to get through this.

  9. This sounds like they found exactly what they expected and did exactly what they had hoped to do....

    I am so relieved for ya'll that this part of your journey is behind you....I can't imagine what y'all are going through...I wouldn't even be able to type my name, much less this newsy note! You are holding up remarkably well!!!

    Just keep us posted when you are able to...We are all anxious to hear, but we understand if you aren't able to...

    Try and rest...


    PS: I hope you don't mind, but I posted about Bennett on my FBook page, so lots of folks have been sending up prayers and good thoughts and want me to keep them updated...

  10. As you probably already know, there are very few AEDs that can be given through IV. Sophie was put on Depakote and Dilantin right after surgery through her IV. Once her IV was taken out, she was given both of those in liquid form and continues to take them in liquid form. I was hesitant with the Depakote since it failed twice before but she remains SF.

    There is so much hope in this post. I know you still have a long road but it seems to be going in the right direction.

    I am wondering...was his head wrapped or did you see the stitches? Meghan is right...the swelling gets much worse over the next couple of days before it gets better. But maybe since he didn't have grids that might not be true. Anyway, thanks for the update and you all continue to be in my thoughts.

  11. So glad things sound so good. Especially the part about being able to identify what they removed as the focus! I know the PICU seems like a scary place, but the nurses and docs there are the best.

    And thanks for the concern, but crazily enough, I'm okay with it. Now, in 6 months, if we're still dealing with the spasms, I reserve the right to change my mind. I think the visit solidified my resolve to keep battling this crap with meds and it reinforced that we are doing all the right stuff.

    So I'm staying hopeful that we'll still beat it, even without surgery. I wil update our blog about visit details, but I'm exhausted and have been napping with my sweet girl since we got home.

    I am so glad to read your update though. It sounds like you are pleased with how things are going, even though it is early. That is just wonderful.

  12. Just wanted you guys to know we were thinking about you and hope for a speedy recovery

  13. Hi. Thinking of little Bennett. Sorry but nothing can prepare you for this but I had to try. Glad to hear they did a grid. They did a 64 probe softgrid for Emma. It gives a measure of confidence. Gory message - keep his bowels moving. Keeps his stress levels low. That's a good thing. After all of this you won't want to watch him in agony straining to do a BM. They can give suppositories to help everything along if he has any issues. Hope things go well over the next 24 hours.

  14. Great news! Kate and I send our best.

  15. Sounds like great news! So glad they found the focus...praying everything continues to go smoothly from here on out!

  16. The little you do know, is the best we could hope for at this stage, so so far, surgery only have upsides and no downsides. So at least that is very positive.

    Being cautiously optimistic is the way to go. Small expectations are always good, even though inside we're shooting for the moon.

    The EEG test, could it be a baseline test?

    Bennett is out like a light, and plugged to more machines than you'd like, but he's "resting" you guys need to do the same. Easy to say, really hard to do. But there is almost nothing you can do for him at this stage, so save yourselves, for when we awakes, when he'll really need you guys, and when your stress level will go up several degrees.

    The plane ride if over, time to pick up the luggage and see how the luggage handlers behaved with your stuff.

  17. Continuing to keep Bennett in thoughts and prayer. Hoping you and your wife find peace, rest and strength over these next few days and weeks to help your precious little one!

    ~Kandra (Kate's mom)

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