Friday, August 28, 2009

More From Cleveland



It's funny, you think you have more time than you actually do. Especially on this day. Lots of caring for the little guy, visitors and some activity in the whole scenario.

Again, brief as I can be, but I'm not trying to write literature here as much as I am trying to get facts to people.

THE GOOD:
Bennett is healing well. His body is strong, his will is strong. Today he was awake, and aware, for a while, and doing 'Bennett' type things. He has full movement in all extremities and is using them all. He tracked well with his eyes, he sucked his thumb and played with his tag, and he babbled. When he eventually looked directly at me and said 'Dadda', I sobbed like a little girl. This was less than 24 hours after his surgery. I was not expecting that.

MORE GOOD: The sutures looked great, whoever stitched him up did a nice job, very clean, very precise work.

THE BAD:
Still having seizures.

Bennett had a ferocious set of seizures at 11:30 PM last night, after I wrote my entry from yesterday. It was not what I expected, I expected a different kind of healing seizure, not a cluster of spasms. The next day, we tried giving him his oral meds, he puked them up. And we had to come up with some alternatives. He is now taking an IV of something like Dilantin but not that, something whose name I did not write down. I was devastated, but remember, my days are full of huge highs and huge lows, but I'll cover all that kind of stuff in recap form.

In addition to the ones last night, he had another set lasting 4 minutes around 5 minutes ago, Jen just called and told me. She wanted me to ask any surgery Moms and Dads out there how many post surgery seizures your children had and were they the same type? This clearly has us very on edge.

Now, the neuro-surgeon has not ruled out that we might not see a few more, that isn't how we judge success/failure of the operation just yet. We need to give that aspect of it some time I am told. But you can only imagine how this makes us feel.

He is still in ICU, running a fever for a while now. Nervous about that. Do not want to see infection. His MRI was today, so far I don't have any answers about what they saw today. Still in a lot of pain and discomfort and all I want to do is hold him and I can't. The wound is still bleeding a little, so they changed the dressing and are keeping him in ICU one more night.

Now...if you are squeamish, now is your chance to bail. Just stop reading, because I am going to show you the photos I took of the changing of the dressing. There is blood. But hell he's my son, and despite all of that he is still beautiful to me. If I can handle it, so can you. But if not, just wait until another post to read further.

USE CAUTION BEFORE SCROLLING DOWN, YOU HAVE BEEN SUFFICIENTLY WARNED.

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Some might question why I would post those. I don't. He is my beautiful son and despite what I see, I still see that beauty and I see hope and potential in that pain and disturbing imagery. If we can just figure out if these post op seizures can end. They need to. Soon. Is it intense? Sure. But I have always put it out there and always will.

At the end of the day, always be true to who you are.

By the way, I'd recommend the Cleveland Clinic to ANYONE wanting to have their child taken care of for a condition such as epilepsy. They REALLY know what they are doing and man they were all pros about their jobs and roles. It has been uncanny.

And now, I am going to go collapse in a heap, I'm exhausted.

21 comments:

  1. He really is looking good. I hope the seizures are just some of the last activity working it's way out. I am think ing of you and wishing you all the best. Stay strong Bennett.

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  2. Thanks for posting. Sounds like you have your hands more than full. Praying for a quick recovery and an end to the seizures!

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  3. I thought I would reply even though my situation is a lot different than yours as my daughter had medical issues besides the seizures.

    My daughter had a corpus callosotomy in 2203. Before she had the surgery, she had stopped being able to walk or feed herself because she had atonic (drop) seizures.

    While she never stopped having seizures, the surgery did lessen the severity of the seizures so I still consider the surgery a success. She was able to re-learn how to walk.

    She continues to have seizures now, but as I said, the surgery did change the kind she has. She now has complex partial and absence seizures. While I would give anything for her to be seizure free, I would rather have these kinds than the ones she had prior to surgery.

    Bennett is looking really good. I truly hope that his post-op seizures are just a result of the surgery and that they will go away soon.

    I've been through every seizure "treatment" known to man. If there is anything you ever want to ask me please feel free to.

    I'm sorry my comment is so long. Since I've been on this journey so long, I just want to reach out if I can be of help.

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  4. I am glad to hear that he looks good and is doing so well already. I am so sorry about the seizures. I am sure spasms were the last thing you wanted to see. I hope maybe another surgery parent is able to shed some light on this for you. I know the docs always say to expect seizures. Do they say it is unusual to still see spasms?

    Thanks for sharing all the pics. I think he looks beautiful too. And the incision looks almost exactly as you previously described. I am glad you are so happy with the care he is receiving.

    Thanks so much for the update. I may have checked your blog a few hundred times today to see how Bennett was doing. I will continue to pray for his healing and for you and Jen as well.

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  5. He is absolutely beautiful.He is absolutely strong.Look at that scar.Evidence of his courage and his battle with this ferocious beast.Post those pictures and look at them over and over and be reminded of how incredibly resilient your beautiful boy is.I am sure you are on edge.Normal place to be dwelling.We send prayers to you all as you sit on this cusp.Hang on tight.Bennett will continue to show you the way.

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  6. Hi,
    we were told to expect seizures. Any and all kinds. Up to six months after surgery. She managed to take her meds after surgery. So no spasms. But two days later she had the most horrific convulsive seizures. One lasted more than five minutes. They gave her some type of vallium after that and we did not see another seizure for two months. As you know things went in a different direction after that. A few things to note: the surgical scar can cause seizures while healing and also the brain has learned to seize and still needs to settle down and unlearn it.

    Seeing seizures after surgery = the worst kind of heartbreak. I know that well. But it's too soon to judge the surgery a failure. Way too soon. Be strong for Bennett. Hugs to you and Jen.

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  7. It is amazing how peaceful and beautiful he looks while laying there getting his head wrap changed.

    The Good...is so very good. It is wonderful that he is doing all that already. And saying "dadda" while looking straight at you...how could you not sob like a little girl?!?!

    The Bad...I am hoping and praying they stop quickly. The IV Dilantin...does phenytoin sound familiar? Did you discuss IV Depakote? I know that is a drug that Dr. C puts almost all surgery patients on. The brain needs time to heal. To unlearn the seizure behavior. I was told that post-op seizures would be a possibility but beyond that I don't know anything.

    I am hoping that you all are getting some rest right now.

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  8. thanks so much for posting this stuff. I've been in a medical library too long - my first thought was "wow! that's one clean and impressive bunch of sutures!"

    Also - that's not much blood at all.I think I had more when I got my ears pinned back. They did a pretty neat job of sealing him up.

    Good luck!

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  9. He is SO beautiful. That's what I see too.

    I meant to email you awhile ago...two websites. The Hemisphere Foundation and there is a yahoo group as well. Maybe you've already joined? I don't know...but if not it might be good to join so you can ask all these questions from a larger people pool.

    I'm so sorry there has been after-stress. Somehow...in my mind...it's just supposed to happen that way. There are supposed to be angels singing...and smiles. Not fevers...and seizures. I'm so sorry, guys.

    Praying...and thinking about you non-stop...

    ...danielle

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  10. Lilly you bitch, you were afraid he'd forget his dad, and less than 24 hours after the surgery he looks at his usual bald guy as says "daddy". You need to take that kid out for some fun as soon as he can leave the hospital just for that.

    The brain got a bit of it removed, not it needs to make new connections, that's one probable cause for the still existing seizures. Sure they are disappointing, but I'm sure you'll be happier when you get the result of the MRI. And are they doing a biopsy too (on the tumor)?

    I must be a total freak, but I loved the "scary" pictures, the sutures are done to perfection, and even the incision itself is made in a shape that will not interfere in his growing up process.

    I understand you're scared because he has a little fever, but remember, this was brain surgery after all. A little fever is even good, because it means the white cells are doing their job, and not letting whatever escalate to an infection.

    @Dawn: Corpus Callosotomy in 2203? It was done in the future? Please give me the address of the time machine there are things I need to change! lol

    Did you daughter develop any body identity problems as a result of the surgery, like the common Alien Hand, or something like that? Because she is now, essentially, two people in one brain.

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  11. Ditto to my last post. He is beautiful. No amount of anything will ever take that away.
    I hope he feels better very soon.

    Karen

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  12. I know when we went through surgery they said that it is common for patients to have seizures after surgery because epilepsy is a "learned" behavior and the brain has to learn to calm down. Also, when you remove a major focus the brain really wants to react. They told us to expect "unusual" seizures. Jackson never had any right after surgery, but I know they told us it was a possibility during the healing process.

    Praying this is all part of the process and the healing of the brain. I hope Bennett's fever is down. too. He looks really good for just having surgery. I am glad you all have been impressed with the Cleveland Clinic...we have heard great things about their program as well. Take care!

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  13. We are going to the Cleveland Clinic with Kate at the end of this month for our second opinion. I am continuing to pray for your family...I am so proud of the way you are handling this...I have such admiration for you...I really do. When things settle down for you...I'd love to talk more to you...

    Kandra

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  14. Hey! Odd question: why did they shave so much hair off?

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  15. "Dadda"

    Awesome.

    Thanks for the pictures post "turban"...he is precious.

    Praying.

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  16. Angelic came to my mind when I saw the photos. I can't get over that precious Bennett face. He looks wonderful -stitches and all.

    I'm so sorry the seizures continue. Even if they prepared you for the possibility, it still has to be disappointing. But, I will be praying they subside soon.

    Thinking of you, Jen, and Bennett...hugs to all of you.

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  17. Telmo...sorry. I meant 2003. I couldn't have just a common misspelled word typo, I had to really make a typing error that will haunt my every online moment.

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  18. @Dawn: I didn't meant it like that at all. I kinda figured that it was the year 2003, but I didn't know if 2203 was some type or Corpus Callosotomy, some code.

    Trust me, English is my second language, the first one being Portuguese, so English is a very different one for me, but I do alright, I guess, especially considering I have dyslexia, and a few other goodies. So not only do I mistype, I also flat out spell wrongly tons of stuff.

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  19. He looks just beautiful. A tiny warrior who is just fresh out of battle with the seizure monster. His strengthis a beautiful thing.

    Hang in there

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  20. Hey...It sounds like things are really progressing....Calling you by name? I would have crumbled in the floor at that one....AMAZING!!!

    From these experienced parents, it sounds like your boy is reacting very normally....I am sure my heart would sink as well at the site of the first seizure...And any type of brain surgery or interference will cause them...And any type of surgery will cause a temp...So maybe this is the beginning of normalcy!!!

    I was so grateful to see the photos...Thanks for posting them....He is an angel with a beautiful battle scar....He's on his way to winning this war....

    Continue to be strong....You're doing great as well...

    Cyndi

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  21. Precious. He's absolutely precious Ken. You have one very courageous little boy there. I can't believe how great that incision area looks!

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