Sunday, August 30, 2009

Lack of Consistency

You know what it is that gets me so much? Same thing as always. Lack of consistency. Was thinking about this on my shuttle ride back to one of the saddest places on Earth, the Ronald McDonald House. (By sad I mean just so many families suffering, it blows).

Anyway, Sinead's docs didn't bother with a post OP EEG, saying the chaotic nature of the brain as it heals doesn't give a clear picture. Here they do. Sophie had grids, Bennett did not. And on and on and on...I can never get a baseline of my own to work from.

This fucking disorder is like that. No consistency and it just gets to me.

And the other thing is...I DO NOT KNOW HOW TO FEEL. Bennett hasn't had a seizure in over 36 hours, longest ever. But he's also a zombie right now. How am I supposed to feel? No seizures, but a chaotic EEG? How am I suppose to feel? Responds a little to me, most of the time he's not home. Probably gonna change as time passes, in the meantime HOW AM I SUPPOSED TO FEEL.

They do not give you manuals for this shit. And don't get me wrong, the docs here have been great. This whole week has just been like this whole year...full of unknowns. One answer leads to 10 questions. One door opens another closes. I'm just super, super tired of it.

OK, rant over.

On the plus side...Bennett's eye was a lot less swollen by the end of the day, temp is down again, and he is eating and drinking more. Positives. Positives.

10 comments:

  1. Most of what I'd say here, I just left in the previous comment to this one, so no use in writing it again.

    Doctors from different places have different techniques, with brain problems, more than anything else, each case is a case, so there really is no baseline to study, or to refer ourselves to.

    How are you supposed to feel? Like shit, naturally, your kid just had brain surgery, he didn't jump out of the bed, and asked to go home, the recovery is naturally slow. You guys have been dealing with this for quite some time, but even if you conscientiously know that surgery wouldn't be the wave of a wand, secretly you really wanted it to be, and he'd be all better 24 hours later, and his not yet.

    These take time, and time in hospitals in the slowest thing around. The blasted clocks only seems to go into light speed when something is going wrong. When it's a game of wait and see, boy those dials just don't move.

    If you guys were uncaring parents, it probably wouldn't affect you much, but being who I believe you guys are, it's very normal that these things bring you down, and make you feel like crap. (or better yet, hammered crap)

    It's not desirable, but it's the most loving and natural response, to the feeling of having a sick child, and there being nothing you can do.

    Again all I can say is: Give him time, it's too soon, to be making judgments, those neuro-pathways need to fix each other and connect the portions of the brain that are on the barrier of what was cut out, not to mention that the whole brain needs to relearn most of the things it thought it knew so far.

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  2. You're supposed to feel how you feel. You may not be able to interpret how you are feeling but you are still feeling all of the time. I'm glad that the swelling is a little improved and I'm glad that you get to rest. And I'm beyond sorry that there is nothing at all that I can do for you because every child is different. Ken this sucks. It was always going to suck in the first few days because that is part of the process but this sucks big time. I know it will get better. You have to feel what you are feeling but you also have to give it time before you make a conclusion. It is simply and sadly more unknown but that does not mean that it will always be that way. Tuesday morning he could just wake up his normal self. I don't know that it will happen but you don't know that it won't so hold out some hope and faith in Bennetts ability to heal. Hope. Think about Bennett saying Dada and hold onto it as tight as possible because he gave you that gift because you needed it to believe in him. Focus on dada and give him some time to bounce back. And know that he is on a zombie drug. Take care.
    Sinead

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  3. Like shit...That's how you are supposed to feel...I know I would...

    Y'all are going to come through to the other side of this and be amazed at how you actually did it...

    No seizures for that time period is a dream come true...I know this activity that continues is puzzlig and frightening, though...

    Just keep holding on....

    Cyndi

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  4. Try to take it one positive at a time...sounds like you have several going now though. One being no seizures for 36 hours. That's a big deal.

    And I'm sorry there are so many unanswered questions and concerns. You guys will be in my thoughts and prayers. That might sound kind of generic, but it's true. I've been thinking of all of you nonstop..telling everyone I talk to, to pray for Bennett. He has got one irresistable little face. It melts my heart.

    Give yourself the freedom to feel what you feel. There are no right or wrong feelings here. No instructions, no manual...just improvisation. One good moment at a time. Seizures are very much improved. Hang on to that for now.

    Hoping to read about a good day tomorrow...

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  5. I hope tomorrow is better for you, with some good or encouraging news. Praying for Bennett and you all.

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  6. I don't know eaxactly about the type of surgery that Bennett had, but my son had major brain bleeding and the think they told me that made the most sense to me was: it takes a while to heal. And it did. Charlie's arm shook for the first three months of his life as a result of brain trauma.

    As for the EEG--I hate those things. And I've seen good ones and bad ones and they didn't look all that different to me. Charlie always has some abnormal activity, but no actual seizures any more. The abnormal is fine and he's been developing ever since we killed the seizures--hopefully Bennett will be the same.


    There's no right way to feel right now so just go with it.

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  7. Your previous post,broke my heart.I did not even have words to say to you.Which for me,is unusual.My heart continues to be heavy but hopeful.I have heard it a million times over the course of the last two years,especially the last 9 months on the cancer train,and it is this:Every child is different.Bennett is going to do this thing in his own way and in his own time.I wish I could fast forward for you but then again would you want me to?You might miss some truly remarkable stuff if I did.So for now,go numb a bit,don't feel anything except maybe the soft squishy hand of your little fighter,the hug of your remarkable big boy and the sweet,rhythmic breath of your beautiful wife as she assures you that you all will get through this.Because,you will get through this.

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  8. Focus on the positives and not the unknowns. Major positive in 36hours SF. Even with Vigabatrin stopping Ausitn's seizures in 4 days, it took 2 months ofr the hypps to be gone. Give him time to heal!

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  9. 36 hours. Who knew such a short time would be so significant??

    There is no right or wrong way to feel. You feel as you need to. No one expects you to be happy-go-lucky and all full of joy when your little boy is recovering from brain surgery.

    Still praying for you all and hoping that Bennett continues to be seizure free.

    Any idea when they will have the results of the biopsy of the tumor??

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  10. Biopsy results will probably be end of the week, early next. We'll be gone and the stitches will be out by the time we know for sure on that.

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