Tuesday, September 15, 2009

Holy Crap, the Ups and Downs? Killin' Me

Yesterday Bennett had a pretty good day. Less of the inconsolable crying or screeching, aggression and other just non-happy behavior. It wasn't a bad day at all as a matter of fact.

Today? Oy...

Just when you think you turn a corner on this journey of life, you find that you DO turn a corner and someone put a wall there. My nose is pushed in from hitting so many FUCKING walls.

WOW. Just crying and angry and upset over everything, hard to console. Things that used to be easy things that would gratify him, he'll just slap me in the face with it when I give it to him. If he were quicker, I'd have a bite mark on my cheek today. But I was a tad faster. But he went after me like that chick in the Jennifer's Body commercial, no shit. I was stunned by that, I've never had a child go for my face as if he intended to chew it off.

A few moments of calm, but it was a rough, rough day. Hard to concentrate with him in the house. I hate to say it but I am looking forward to when he goes back to getting care outside the home, ala Day Care or the GP's, if they'll still do it. Saturation point here I come. Oh wait...already there.

Mentioned this in a comment, but had two nice calls, one with his Case Manager and another with someone from Cleveland Clinic. They said it was cool to go ahead and start the Vigabatrin wean. I'm glad they decided that, since we were gonna do it anyway. Slow wean, 250 every two weeks, and that was, ironically, EXACTLY the schedule I had planned.

Paging Dr. Lilly, paging Dr. Lilly...STAT!

There was a moment this afternoon, while I was trying to get some work done, where I almost just picked up my machine and threw it across the room, the screeching was that bad. Sounded like Rodan had entered my living room below. And no matter what I tried to do when I went down to try to help, well, that was when he turned into Vampire Boy, mentioned above.

Well, shit happens, right?

The CC guy said this was fairly common post-surgery. Sensory Overload was what he called it, what a lot of people have called it. He did say if we had ANY gut feeling at all whatsoever about his pain increasing, then by all means go to an ER and get some tests done, though he also said it was not likely based on our descriptions of how he was being.

Funny...when I actually said that I felt a bit awkward about taking up so much of his time on things that were probably trivial, he said something that reminded me of why the Cleveland Clinic is so great. 'No fear you have over your child's well being while recovering from a surgery like this is trivial.'

So...that's the latest. I hear Rodan in the other room. Gotta go deal...

But, still no seizures, and that's a good thing.


  1. It's great that you got to talk to "guy from Cleveland Clinic". I assume he's a resident and not a guy who cleans the toilet there. ;-) Anyhow, any one of us could have said the words sensory overload but it wouldn't have meant anything. Until you hear it yourself from a doctor it is only someone elses theory. So I am glad you have good support. I wish you didn't need it but that's neither here nor there. We are on this journey whether we like it or not. I have some scary news for you. Emma is still biting. It's not as bad as just after the surgery but here we are 4 1/2 months on from surgery and she took a bite out of the babysitters face. My husband had to slap her cheek gently to surprise her into letting go. She's gone after me a few times but she did not succeed. It is scary. That's why I celebrate the good days. Most of the time she is not that bad. But I know the feeling. It's like you look at the child and you cannot believe it's yours. And no matter what you do it doesn't help. Ask your OT about a weighted vest or weighted blanket. Might give him some help with the sensory issues. We are getting a weighted vest for Emma.

  2. I am sorry there is not that clear improvement every day that I know you wish you were seeing. And that you've got a biting, screetching child. I wish I had a crystal ball and could just tell you that it will be better and when.....

    Just try to enjoy the good times when they happen. I wish I knew how to help.

  3. For weeks, I had a new bruise somewhere on my body on a daily basis. That is how hard Sophie would bite me. It got to the point where I would get tense every time her face came near me. Not a great feeling to have. Sometimes I couldn't stop her because my arms were tied up holding Charlie. Arms, legs, face...it didn't matter...she was satisfied with whatever bit of skin she could sink her teeth in.

    Sophie did a lot of wanting something, then I would give it to her and then she would collapse in tears. And there was no consoling her. It's hard. I couldn't figure her out. I couldn't do anything right. The harder I tried to meet her demands, the harder she would throw a fit.

    BUT...This past weekend was a turning point. Actually, I would say last Thursday was the turning point. Her behavior is getting better. Not great by all means. But better. I am currently bruise-free.

  4. Oh sheesh...I've SO gotta go hole up in a mountain cave until AFTER!

    But Dr. Lilly may need his sidekick Dr. Dani...sooooo...

    But I'm thinking you've turned a page of some kind...because your funny is breaking through.Here's hoping Bennett's page comes soon!

    And by golly...I hope I don't have a vampire kid after. I have vamp-aphobia!


  5. No seizures.... awesome!

    Did Danielle every forward you an email from me? I didn't have your email handy but it was about kids getting SF and then suffering almost a psychosis because the body couldn't handle being SF. If you didn't get it, let me know and I will forward it again.

    Also, if he has a need to chew, have you tried a p-tool or something similar?

  6. Sensory overload + immesurable frustraion at not being able to communicate... I hope these days are the push his brain needs to make the leap into speech.

  7. Of course...you may not want to hear what he has to say Ken ;-)

  8. Sounds like you got some good reassurances from C. Clinic...I know that helped to a point....

    Like I commented on Elaine's blog earlier, I know you feel like you have traded in one problem for another...But as many of those folks much more knowledgeable than I have said, the brain must be terribly overloaded right now and still "learning" NOT to have seizures....

    Amazing....All of this...Especially the way you are dealing with it....

    Keep it up...

    "This too shall pass..." as Mom always says to me....Ha! And you don't want to know what I usually want to say back to her!!! I NEVER feel like it will pass!!! But the actual "crisis" period always does....Eventually...


  9. I know i've said this before, but seriously, after Charlie had g-tube surgery he screamed for a week straight. It was completely, completely horrible and it took my husband and me and both our mothers to get through that week.

    I cant' imagine what it would be like to recover from major neurosurgery like Bennett's had.

    And please don't ever feel bad about saying you need a break from the exaustion/noise of children--parents of regular ole kids feel that way all the time.

    Oh, and I wanted to say, Bennett does the exact same thing with his eyes that Charlie does when he wants to say a word but nothing comes out. It's like they're looking around in their heads for the answer, but can't seem to find it.

  10. Well the wean is great. But I think you're still going to have to deal with cannibal boy a little bit longer, because I do believe that is both medication related, and surgery related.

    And the guy at the CC is right, not concern is trivial, because the surgery Bennett has wasn't anything like getting your appendix out, it was brain surgery after all, a term we use to describe something that is extremely difficult or dangerous.

    Considering we're seeing signs that show us Bennett is more aware, of himself and his surroundings, it's not a big deal, it's a huge deal. He's in overdrive, because his brain pretty much developed without that stimulus and now, instead of experiencing them gradually, he feels more like he's in the middle of a raging flood of stimulus, that are all (almost) new, and a little too dumbfounding, not to mention that his brain isn't fully healed yet, brain cells are renowned for being the slowest cells in all the body (in want regards change of healing).


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