Saturday, August 29, 2009

Another Quickie Non-Update

I say NON-update cause I am just writing in order to be cathartic. Nothing new has gown down.

It was a quiet night in M35. The Ronald McDonald House donated two tickets to the Browns/Titans pre-season football game. I did not have the heart to go, but both grand-Dads went and are still there as of this writing. The grand-Moms went back to their respective hotels and I split to let Jen and Carter get some sleep.

He was out of it, she knew it was a golden opportunity to get some shut eye, so I bolted. I haven't and probably will not be spending any overnights in the hospital. Jen will do that. Then when I arrive in the morning I take over and she comes back here and sleeps as much or as little as she needs to.

She misses being in the rooms for the rounds, but for the most part remembering and relaying details is a strength of mine so she doesn't feel left out. I said FOR THE MOST PART, as I completely forgot that Neuro-Surgery rounded in the AM and had everyone wondering why they had not come by. I thought it was the day before. Time? It is a strange thing in a hospital room.

The Chief Resident came down via special request and went over everything, and when I suddenly remembered that yeah you did tell me all that I humbly apologized for my brain fart. He was a cool guy. Besides, Jen didn't mind, the dude is hot, good eye candy for her. I don't mind. Lookin' at my ugly dome all day has got to get old.

Since my earlier post, there were no changes. Bennett stared eerily a lot. I was deeply, deeply disturbed by it. I was disturbed watching the EEG, which looked like all the others I have seen. Erratic as hell. I mean, looked like a constant state of seizure activity. That was hard too. Could just be what an EEG looks like when a brain is healing, it's just scary as all shit. I've lost it more often today than any other day. And that's saying something, as emotional control has not been my strong suit these past few days. I am so very, VERY worn down and tears are just always just on my face. Almost as natural as my facial hair now.

I thought about trying to sift through all the comments left and individually respond to them, and answer any questions, but you all have been SO supportive and left SO many great things in there it has made it nigh impossible to do so. So I have to take the jackass way out and just say thanks to everyone. I DO read every comment, I really do, and so do many of my family members and friends. We talk about many of you in very glowing, very warm ways.

If there is something you really need to know just e-mail me a note, and I can get back to you on it now. I can get access to most of the e-mail addresses I use at least once a day at the RMH. But know this...thank you all who are trying so hard. I can't tell you what your comments have meant to me. They are like food to a starving man sometimes.

So tomorrow is another day. I am hoping Bennett is more responsive, especially since Carter will be coming up for a visit. My biggest concerns are trying to minimize Carter's freaking out over seeing Bennett in his current state and also trying very hard not to let my five year old son see me break down and cry too hard. I don't mind him seeing some tears, I just have to be sure to be as strong as I can be for him.

After Sunday, Jen and I will be on our own. All the family members will be gone, and we'll have to manage with just each other. So the sooner we can get Bennett out of there the better. I'm hoping it's Tue-Wed, but we'll see. Still lots of twists and turns twixt now and then.

20 comments:

  1. Hi Ken,
    Been following Bennetts progress and yours as well. You and your family are forever in my thoughts. You're doing a fabulous job of holding it together, much better than I ever could.

    Adelle - Noahs Mum.

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  2. It's cathartic to write, even if it's just reguritating the day's event. Plus it allows you to recite and remember and catalog everything for future reference.

    I'm glad Carter is getting a chance to come and visit. He's smart enough to know something is happening and this will allow his to understand better, but take his lead. If he's getting freaky, take him out for ice cream and let him talk it over with you.

    Hang in there, you're all in my thoughts and prayers.

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  3. I found you via Dear Trevor... I've gone back and read much of your recent posts... prayers and hugs for you and your family.

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  4. Let go of the not responding to comments ... no one cares.Truly.No one cares.People come because they care about you all.They come to check on your days,knowing full well that they are a mess for the most part but they come to lend support in the form of words or prayers or just reading because they know you need to vent.The fact that you are getting up in the morning and putting one foot in front of the other means you are doing good.It's all that is expected.There is no manual for this stuff Ken.Nothing in our life before these children could have prepared us for this journey but because of my experience I know one thing for certain ... you will find your way through this.I promise you will.Prayers for the mighty fighter and peace for you all as you continue to move into tomorrow and beyond.

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  5. It's late. I've imbibed. Thoughts:

    You are an awesome dad. Bennett, obviously in the deepest reaches of his mind, feels that ("Dadda"). I thought about it: Though today he appeared absent...yesterday, he SAW you. He knew you in that moment...That is there...he retained that recognition. It won't go away. Today was a fog for him. The most important thing is that you and Jen are there through the fog. He may not be able to respond, but I believe he knows his Mommy and his Daddy. Infants know it within the first month. Must reside in the deepest most protected part of our brains.

    Carter. The gift you give him when he sees you cry is the same as the gift you give him when he sees you laugh. Life is joy; life is very, very hard sometimes. I believe our children need our permission to FEEL...whatever the situation, whatever the feeling. Your words after you cry are important, as are those who are around. When Dora saw me cry for the first time, her mother and my sister helped her understand...we were that much closer after that.

    You are an awesome Father...and your boys will be reflections of that truth.

    Tears don't make you weak...they make you strong.

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  6. Hi Ken,
    Haven't been able to comment for a while, I apologize for that. Bennett has been in my thoughts constantly. I'm amazingly squeamish, I looked at the pictures because you're right-- if you and Jen can see your son through this, I can look at a few photographs. I only saw one thing-- you have a truly beautiful son.
    --Annika

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  7. I have done that....forgotten who had rounded in our room and made them come back. Time is just sort of fluid in a hospital. The fluorescent lighting doesn't help. It just gets me off all my natural rhythms. The doctors are used to that though, don't worry.

    I hope y'all are out of there early this week too. That will be good for all of you, especially to get to be at home with Carter again.

    And stop looking at the EEG! You don't really know what it all means and it is just adding to your anxiety. Remember, when kids get SF on meds, it can take a long while before their EEG cleans up. Bennett is two days post-op. His brain is working hard to figure itself out right now. Give it some time before you expect a pretty EEG.

    Thinking of y'all lots.

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  8. I can't possibly relate to what you are going through Ken but those boys sure as hell have an awesome dad.

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  9. I'll keep it short. You are doing an amazing job and setting such a great example for others out there. I can't tell you how much I admire and respect that. Stay strong and best of luck throughout the rest of this journey.

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  10. This is the post I have been waiting for... It just feels more you. Less numb. And I needed to hear that.

    Gotta love the young hot residents! ;) And it's so wonderful that BOTH g'rents are there...with Carter! I just know seeing Carter will be healing for Bennett. The love of siblings is special like that.

    Love you guys...truly. I am hoping & praying ...danielle

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  11. hang in there Ken...we're all rooting for you!

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  12. Ken, Jen and family,
    Your struggle makes me cry because it's not so long ago that we went though this. I tried so hard to be brave at the time but it tore me apart to see seizures post surgery. No matter how hard I tried I could not stop mapping out in my head the next 20 years forward with seizures. I should not have thought about the future at the time but I did.

    I remember asking the doctor why they did the grid before resection but not after. She said there is no point because the brain is in a total mess trying to figure out it's pathways and the data you get is false. I guess I would worry less about the background for the next few weeks and more about the specific events and their origin.

    The other thing I began to notice after I came home was weird behaviors that started to escalate. I though they were seizures. The child poops and I think it is a seizure... Anyway we caught the suspicious events on the next EEG and they were not seizures. I asked the head of the epilepsy dept about it and he discussed "forced normalization". The brain has been in chaos for a long time and now the bad kid is removed and the brain is forced to operate normally. And it goes into sensory overload. The volume on the world is turned up and it's very disturbing for a child. So know that this might factor into his recovery.

    As I write this, I have a child whose last seizure was 48 hours ago. We did not get the perfect outcome but the seizures are managable and she is learning and growing. I hope for so much more for Bennett. But whatever the outcome that piece of malformed tumor occupied brain is gone and that was never going to do him any good.

    I know you are strong people and you will deal with everything this journey brings you. It's ok to have bad moments, bad days, breakdowns. It's just because you love Bennett and want his pain and suffering to stop so he can go back to being the lovely little boy he was before all of this. We all want that for him and we are praying in our own ways that it will happen soon.

    Love to you all. We have never met but you are my family too now!
    Sinead

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  13. Ken- please know in your heart that i continue to keep Bennett and all of you in my prayers daily. I know this must be such a difficult process to watch your dear little boy go through. My heart goes out to you. Please give my best to your Mom too.
    Robin Hill

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  14. Ken, hospitals suck, but it's better to be there one extra day, than it is to leave a day early. Trust someone that has spend a lot of time in hospitals.

    It's nice to see a man that doesn't mind to say he cries, and that can judge if another man in hot or not. Because we all know real manly man (you know the ones that overcompensate because they aren't 100% sure of their sexuality) don't cry, and don't look at other men.

    I don't mind saying here in the comments themselves, that I love the fact that so many people have been posting, and therefore caring. Not only is it a positive thing for you, but shows us that there is hope for mankind yet.

    So thanks to all people who commented for renewing my "faith" in humankind.

    This was literally BRAIN SURGERY, if recovering from other kinds of surgery is slow, I'm betting this is one of the slowest ones yet. So give Bennett time to piece himself together.

    I was just thinking about how much we both love the show "House", and that "I Hate Medical Mysteries" post you made a while back, and I was thinking: Have the lumps in your neck gone away? You need to take care of Bennett, but you need to take care of yourself too, if you don't, you'll not be able to take care of Bennett of anyone.

    Carter being there is great, I know it's not the best time, but I'm sure it cheered you guys up.

    Tomorrow is another day, and statistically the further away you get from the surgery date, the better things should begin to get with Bennett. Full anesthesia, brain surgery, are all traumatic things on suck a little body, he needs his time to recover, but he will, he already recognized his Dadda.

    (Sorry about another "War and Peace" can't seem to keep these short, but I'm so far away, I feel all I can do is write, it's my own cathartic process)

    Through Thick and Thin
    Through Sick and Sin

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  15. Our thoughts are with you, Bennett and the rest of the family...

    -Rob

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  16. I finnaly found a way to get on here and follow the blog so I can leave comments. (I've foloowed every posting, but never been able to DO anything). My heart and good thoughts are still with all of you. You're all amazing --- more soon, me

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  17. Ken, the last thing we want you to worry about is responding to our comments...we are just so grateful you are updating and sharing this with us. We are here for you through this to offer up any type of comforting boost or support we can.

    It can't be easy to see Bennett not acting himself, but the healing will take time. Maybe the seizures as well. I still have much hope that this will be resolved. And, you, Jen, and Bennett will all be on the mend soon.

    Although you may feel like you're in an emotional upheaval, you are showing tremendous strength and courage. Tears are human, especially now.

    Thinking of you all and hoping today is a better day.

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  18. I love to read about everything, Ken....I know I have said this so many times, but you are an AMAZING writer....Even uder these worst of circumstances...I have gone back and looked at the photos again...Bennett is SO beautiful! I LOVE the thumb-sucking....He really looks SO content....

    As Elaine has said, he will start coming around more and more each day....I can only imagine how the monitors get to you...Sometimes I think ignorance is bliss...Sometimes I just don't even want to know!

    It sounds like you and Jen have a good routine worked out for when the g'parents leave....You are so good with medical detail...Glad you can converse with the docs every day....It really sounds like y'all have got some great folks there that are understanding as well...

    I know you can't wait to see Carter...He will do OK....And YOU will do OK WITH Carter....I always worried about Shawn with Colby during his surgeries & hospital stays (though none near as serious)...But he did fine....They are very resilient!

    I'll check in this evening...

    Take good care and keep doing what you are doing....

    Cyndi

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  19. Each day will get better. These first few days post surgery are so hard, but you will start to see Bennett's personality shine through little by little. When they finally told me I could hold Jack, I was scared out of my mind. He just looked like he didn't want to be touched or moved, but once I had him in my arms (even though it was awkward, it felt so good to hold him again.) When they are like this, it makes you feel so scared and helpless, but keep the faith.

    I hope today is a "better" day. We are all thinking about your little sweet Bennett. He looks so good in his pictures!

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  20. By the way, I never answered a single message on Emmas carepage. Possibly I should have but I saw them more as support for us and not as a conversation. I valued them. I will get around to thanking people eventually.....

    For every sentence you have time to type, I am grateful. There is a candle burning in Hatteras today for Bennett.

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