Saturday, August 29, 2009

Out of PICU, On to M35

We've moved out of the PICU and into the Epilepsy Monitoring Unit. M35. This is where we stayed before. Bennett, after his seizure last night, got hooked up to leads and is now undergoing a VEEG for 24 hours.

Ugh.

MRI appears clean, no swelling, no bleeding. Maybe his seizures won't happen today, maybe they will. If they do, he's plugged in and we'll get info.

Today has been very hard for me. Harder than the rest. Can't explain why. Yes I can. Bennett has been very non-responsive today. None of the interaction like yesterday. Stares a lot. His face is not really swollen much at all, but he is VERY spacy. That's been harder than usual.

Anyway, I'll keep it brief, I am just bummed so I don't want to be all depressing and shit. Good days. Bad days. Today? Bad day.

There'll be better days. Not sure why today I don't have some of the hopes I had yesterday. Maybe because I am just so unsure of the whole 'is this really gonna work thing?' and I am dwelling on the negative.

I've seen some of the comments have questions, and I'll try to answer some of I can maybe tomorrow.

Remember, if you don't like seeing sutures and stuff, do not scroll down to the photos below.


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9 comments:

  1. I am sorry today has been so hard. And about the unresponsive thing. But his poor little brain has been really messed with and it makes sense that he would be spacy (not to mention the meds he is on). I hope tomorrow will be better.

    And it sounds like good news that he was able to be moved out of the PICU. The MRI sounds good too.

    Praying for Bennett's continued recovery. And sending you and Jen positive thoughts constantly.

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  2. He looks so cute sucking his thumb. So comfy. And unaware.

    Although I have thought more than once that I probably shouldn't even be following this part...it's so too much. I've been a wreck today. Told Jonathan I needed to run errands just so I could drive and bawl my eyes out. Usually it helps. Not so much today. I feel heavy for you guys. I want you to be over the hump already.

    Anyway...I'm going to go drown my emotions in ice cream.

    You're on my mind constantly. Give Jen a hug from me. And Bennett a kiss.

    xoxo

    ...danielle

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  3. First of all, he looks great...so peaceful and sweet.

    Sophie was very unresponsive for a few days after surgery. She had a blank look in her eyes...like she wasn't really there. Slowly she came back. I think the swelling was the worst 3 days post-op.

    I am so sorry you are having a bad day. I can't stop thinking about you all. My thoughts and love are with you all.

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  4. Dilantin is often used for it's sedating qualities. It's bound to knock him out. A lot of healing happens when you are asleep. I understand the negativity Ken - been there. It's just so disappointing. You hear the words "could have seizures up to six months" but you don't actually prepare or want that to happen. It's not in our hands now. Talk. Talk. Ask to speak with the social worker. You and Jen could use talking to a neutral party round about now.

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  5. This is the third day after the actual surgery, isn't it?

    I can honestly say, without trying to make you feel better that that's the worst day ever, and I should know I've have more general anestherias than most. The day you wake up, you're too sedated, to feel anything, the day after that isn't all that bad, but the third day is when all the anesthesia is finally getting flushed out of your system, and you feel like you're on withdrawal. Seems like the world is on super speed, and you're stuck on snail pace.

    I'm sure that's all that is going on with Bennett, and remember if it hits and adult like that, it's going to douse a child even more. So being sluggish is normal, as long as his remotely responsive that's what matters.

    Also you feel like crap, because like you said, during surgery you were in the plane, nothing you could do, he wasn't even close to you. Now he is a hairsbreadth away from you, but there is still nothing you can do, and take takes the wind out of anyone's sails. You probably can't even pick him up yet, and I know that's something you really want to do, and trust me, when you'll be able to do it, he'll feel frail, and breakable, but you'll get to feel a hell of a lot better, because you've actually been able to touch your son again.

    Hold on Kenny boy, it's hard, but it's part of the process.

    Keep close to Jen, and when you can call Carter to, not only let him know you still love him, but also to let him know how his brother is, that will make him feel like a big man (the older brother) and make him feel an important part of the family. It's those bloody little things that sometimes we forget but that mean so much to everyone involved.

    Of course I'm not teaching you how to be a parent. I just know kids, it's a professional trait.

    I know you feel bad enough about Carter, and that you're not being as good a parent as you could be, but believe me kids understand these things much better than we give them credit for.

    Hope you get test results soon, and in case the did a tumor biopsy that is come out resoundingly negative.

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  6. I agree with everyone, Bennett does look so sweet sucking on his thumb. You are going to have good days and bad days anytime you are in the hospital because of a sick child, let alone one who had brain surgery. It's good to cry, vent, yell, whatever you need to on those bad days and not let them build up.

    I know it's also hard being away from Carter. Taylor was the baby of 3 girls, so anytime I was in the hospital with her, I left her sisters with family. I always wondered if they resented me or their sister for all the time I was away.

    Well, they are 27 and 26 now. They are very close to their sister and love her as much as they love their own children. They told me they always missed me but never once did they feel neglected. They just grew up understanding their sister needed more of mom's time.

    Hang in there. I'm glad to see he's out of the PICU...that's always a step in the right direction.

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  7. I am so glad to hear he is out of PICU, that's certainly a positive step. Keep you spirits up. He looks great.

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  8. Moving out of PICU is wonderful progress....And all tests so far sound good....Glad they are going to get more info with the leads on....

    I would go by what Elaine said about her Sophie...Bennett will "awaken" more and more each day...I am sure the "surgery parent"input is invaluable to you...I wish I could do more to help...

    I will keep praying for all of you...

    Try and rest when you can....

    Cyndi

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  9. Our thoughts are with you, brother, I know how strong you are. Just wish there was something I could do to help.
    Call, if you need anything, even just an ear.
    All our hopes, best wishes and fingers-crossed, my friend.

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