Monday, August 31, 2009

And Just Like That...

The day started great, and continues to be awesome. Neuro-Surgery came in and cleared Bennett for discharge. Then Epilepsy came in, discussed the med situation and cleared Bennett for discharge.

We're going home today. TODAY.

Hard as it is for me to even imagine, Thursday my son had major brain surgery. Today, Monday, four days later, we are going home. Felt like a month. But what a SHORT period of time when you really think about it.

Neuro-Surgery said his incision looked great, they'd already told us the follow-up MRI looked clean and how it was supposed to. Gave us some stuff to keep in mind about the healing and so on, and of course that they will let us know when they do about the pathology.

Epilepsy said they reviewed all the EEG data from the past two nights. There was some spiking, some re-settling, some oddness in it, but they said it wasn't anything that we really needed to worry about. They said he had ONE spasm overnight last night that was indicated by the tech. The suggestion was that it was probably again just a result of the healing...takes a while for the brain to learn that it doesn't have to do that anymore.

The Epileptologist said that the true 'hypsarrhythmia' was gone from the EEG. She also said to keep him on his current meds and that we would not be adding any more. This worries me a LITTLE bit, cause I was hoping to start the Vig wean sooner rather than later, but they agreed we could start a wean or transfer to another med if needed in 6 weeks. That's the follow-up time, six weeks from now.

Told us that if noticed anything at all that was strange, to give them a call, and don't be ashamed to do so...they understand that we will be watching him like a hawk, and are happy to hear from us to either help us cope with a fear or see him in the event we describe anything that concerns them.

So that's it. I went back to RMH to pack the car and clean the room. I'm done. I sit here at RMH, Jen sits at the hospital with Bennett waiting for the discharge to come through. As soon as she calls I will drive over, patient transport will wheel them down and then we are headed to Columbus.

Frankly, I'm stunned, but happy. I'm scared, but hopeful. But I am ready to get my family back together and all be under the same roof tonight. That will be very, very nice indeed.

See you on the other side...


  1. I'm so glad for all of you. It is scary at home especially the first time you put him to bed but you will do fine. Home is where the healing happens.

  2. Oh wow, wow, wow! That's excellent news!!

  3. Wonderful! I'm so happy to hear that you all will be in your own beds tonight!

    Have a safe trip home!

    aaah...that sounds heavenly doesn't it?


  4. Holy cow! That's awesome, I guess. I know I'd be in shock.

    And is hypsarrhythmia actually pronounceable?

  5. Have a safe trip home. It will be so wonderful to have your entire family together in the place you all feel most comfortable.

    I can't tell how much it warms my heart to hear that Bennett is coming around. Not that I didn't think it would happen but because I know how hard it is to see him like that.

    Take it one day at a time. Count each day as they happen. And before you know it...3 months will be here (yesterday marked Sophie's 3 months of no seizures).

  6. Wow! That was fast. You'll be much more comfortable at home, but seriously, that's crazy quick. The body is an amazing thing.

  7. YEAH!!! So glad you are going home to be together as a family. I bet Bennett will continue to come to life much more at know how it is. It's just better to be home!
    Good luck


  8. Wow. Fantastic...
    I can imagine part of you wanted to say "No thank you, we'd like to stay another day just to be sure."
    Know that prayers are with you all every day. Again, I'm glad you have this moment to add to all the others...might give a bit of balance.

  9. Wow! Sounds like all good news. I agree home is where the healing truly begins.

    I think it is standard not to change meds too fast after surgery for most doctors. I was the same way, wanting Jack off Vigabatrin, and it took our doctors 8 months to wean him off that one. 6 weeks is not bad.

    We are routing for Bennett! Hoping for the continuation of seizure free days ahead.

    It is awesome that he is already up and walking! ;-)

  10. Welcome back to the world. Glad to have you. Take a seat and settle in. Great news!

  11. That is just totally super! I know it is scary, but it will truly be so much better for you all to get to sleep in your own beds. Things are so crazy in a hospital; nothing feels right there.

    Travel safe! That is just awesome.

  12. A total 180 from yesterday. That is really wonderful news!

    I KNEW Bennett would be a fighter. What a strong little boy!

    Have a safe trip home!

  13. So incredibly overjoyed for your family...and continuing to keep you in my prayers!


  14. So glad to hear the great news! Continuing to pray for Bennett and the whole family.

  15. Are you KIDDING me???

    I am shocked...amazed...thankful...

    I can't wait to let everyone hear this fantastic news!!!

    Rest, try and relax...and keep us posted!!!



  16. I just reread your post (I have to say I have been obsessed with your blog is an understatement) and I just have to point out how much I love the way it began..."The day started great, and continues to be awesome."

  17. Dude, that's super fast for brain surgery, and there is only one way I can interpret them discharging him so early: "It must mean everything is as good (or better) than they expected".

    I know you know all about the meds for the seizures, and everything related, and I believe Jen is a nurse, so she must know all of this too, but sometime parents want to get out of the hospital so fast that they forget to ask a few things, the doctors also forget. Please ask about antibiotics, and pain management medication, because his incision is healing, but it's not healed yet, and he most likely need antibiotics to it wont infect.

    My little recommendation aside.

    Have a nice trip back home, and try to rest now that you'll be back in you own beds.

    The Lilly's Went to War, and so far it seems like they won this battle, and made a substantial advance in wining future ones.

  18. that is definately news for the soul! I just know that being at home...being with Carter...being AWAY from the's the stuff happy endings are made of!


    Be safe...


  19. So Happy for you! Don't know what else to say.

    Enjoy sleeping in your own beds tonight (after being away I know how wonderful that is - even for Bennett to be back in his own bed)

    Becca and I continue to send you our Love and Hugs!

  20. What fantastic news!!!! I am so happy for your family. Take care and GET SOME REST!!!!
    Marcia K
    Hannah and Blitzen

  21. wow!! You should be home by now! I am ecstatic for you all!!

  22. Great news. This is the kind of post I've been waiting for.

    And wow.. that's one efficient hospital.

  23. that's really cool. Kids bodies have a healing factor like wolverine.

  24. FABULOUS! Hope by now you are home and both boys are sleeping comfortably in their own beds.

  25. That is so awesome! There is no place like home. I'm very happy for you and your family.

  26. Amazing. I'm so happy things went so well and you can now get back home into your routines. Modern medicine amazes me sometimes- well all the time actually. be well.

  27. That is wonderful news Ken- i hope everything continues to go so well - and that Bennett will be spasm and seizure free from now on!!!!


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