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macherry
Jan 21, 2008, 3:41 AM
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good stuff!!!!!!!!!!!!!!!
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snoopy138
Jan 21, 2008, 3:47 AM
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hey, I haven't chimed in yet, but that most recent news is definitely good to hear.
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granite_grrl
Jan 21, 2008, 1:34 PM
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angry wrote: I told him they'd tie it down if he got too wild with it, he totally understood and calmed down.
Guess when I was in the hospital I didn't understand and they had to tie me down a lot of the time too keep me from pulling out tubes and stuff. Sound like your brother knows more about what's going on than I did  . Strong kid. Keep us updated, we're pulling for him and you.
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wanderlustmd
Jan 21, 2008, 1:39 PM
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Good to hear Angry, sounds like he's making pretty impressive progress! Keep us posted, we are thinking of you!
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reno
Jan 21, 2008, 2:27 PM
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Very good news, Angry. He's on the right track, and it's just going to be a matter of more time and rehab.
Very happy to hear this.
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charley
Jan 21, 2008, 2:32 PM
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Good to hear of his progress.
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j_ung
Jan 21, 2008, 2:45 PM
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This has become one of my first stops in the morning. "Oh, yeah, gotta go see how angry's brother is doing." Virtual visiting hours...
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the_climber
Jan 21, 2008, 5:06 PM
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Angry that is GREAT to hear how much your little Bro has improved!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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maww
Jan 21, 2008, 5:36 PM
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I am so happy to hear your brother is improving!! Just reading your posts since Friday made tears well up in my eyes. You guys are in my thoughts.
Thank you for helping me to keep things in perspective.
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angry
Jan 22, 2008, 4:09 AM
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I'm having a hard time leaving his room. I basically spend all my time in there anymore. With his laptop we just hang out and watch movies.
I finally dragged myself out of there. Today was another huge day. 6 of his friends showed up to visit. He's talking a little but he can definately talk. He can write very basic stuff but he's a righty and this is all with his left hand. He's alert, he doesn't doze off. It's great.
My sister and I were talking about the stupid stuff we used to do and he was just cracking up. The kid is laughing. He's even cracking up watching funny things on TV. I believe that he understands everything he sees, he's just struggling expressing himself. It is getting better though.
We even wrote some words on the computer and he said some of them. He sometimes gets hung up and says the same word a few times before switching gears to the next one but that's not too bad.
The best part, the PT got him up today! He was sitting on the side of the bed and she got him to kick his leg, several times. He even sort of stood for a minute. He moved his arm. Later in the day he just started using his right arm. It's slower and more labored but it's moving and it's under his control. I am so happy.
We aren't out of the woods yet. He's got a tube going right into his head that continuously drains. Until it stops draining, he can't be released from the ICU. He's still using a catheter and he knows it, he's damn tired of the thing and can't wait to get it out.
Still no word on the pathology of tumor yet. In Cheyenne, it came out benign. They sent it off to Denver to retest it, they want to be certain it's benign, especially since they had to leave a small bit in him. Treatment for that but could involve radiation, medicines, or another surgery. We still don't know.
I am going home tomorrow, will work 5 days, then come back. I have only worked 2 days in Jan, I guess I need to get some stuff in order.
I just can't believe that it was only a week ago today that we even found this tumor. It feels like a very long time.
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wanderlustmd
Jan 22, 2008, 1:15 PM
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Good news man, glad it came out benign on the first test. As always, good vibes to you and keep us posted.
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boo
Jan 22, 2008, 1:54 PM
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angry, this is all good news. The progress you describe is awesome. Get a lot done this week in CO and get back there this weekend.
Such good news.
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reese_7
Jan 22, 2008, 9:34 PM
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Angry, a friend just forwarded me this thread.... wow! I can't imagine how hard this last week has been on you and your family. I wish you all the best. I'll keep you, your brother, and the rest of your family in my prayers.
I'm so glad to hear that he is making good progress! Tell him to keep it up!
Reese
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kantkatchme
Jan 30, 2008, 4:39 AM
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hows the little bro doing?
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anthonycuskelly
Jan 30, 2008, 9:21 PM
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Hey angry, good to hear your brother made it through the surgery okay, here's hoping he recovers fine (sounds like he will!).
I'm going back to lurking now...
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angry
Feb 10, 2008, 5:27 AM
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It's been a couple weeks since I posted on my brothers condition. He's doing OK.
His right side is getting better and better and with help from the PT, he can walk. They took his catheter out the other day and much to the surprise of the nurses, he got up to use the bathroom on his own. I'm sure a 16 year would love to hear that his older brother is posting on the internet about him using the bathroom on his own.
Speech is still tough. It's slower and he often gets hung up on words. For example, I wrote a bunch of easy math problems on a white board and handed it to him, he solved every one of them correctly. I wrote a few more on the board, held it up, and asked what the answer was. He couldn't say, he just kept repeating what the actual problem said.
I'll ask him what he see's on TV, he can't answer until some text hits the screen and he'll say whatever that says. He'll read whole sentences from the newspaper aloud but still struggles just to tell someone what he wants.
He's ripped out several art lines. He needs daily blood work so these make it nicer than constant pokes. They tend to stay in about a day and get thrown. Little booger.
The drain in his head thats been dripping CSF is still there. Until that's out, he can't leave the ICU. They've removed it twice, both times he got a bunch of swelling and was in really bad pain. It also shut him down, as in, no talking, unresponsive, kid.
An operation to put a shunt in his head is on order. Unfortunately, his stay in the hospital has resulted in a slight staph infection. No big deal really but they aren't going to put the shunt in until it's gone. It will go from his head to his stomach and will just get digested away. Creepy to think about but really no big deal. Kids with hydrocephalus have the same operation and are home within 2 days, so this isn't too big of a deal. Somehow in the operation, he lost the ability to absorb CSF, this isn't uncommon. The only exposed part will be a little tube by the ear, it might be covered but just a little, I'm not sure. It's how they clean it, the shunt is permanent.
The pathology came back. The tumor is slow growing and benign. They tested it every which way, that's why it took so long to find out. No cancer at all. It is slow growing, ie, growing. They'll need to figure out what to do about the piece they left in but there's time.
I don't think he'll be working at the scout camp this summer, but in general, I think he'll be nearly himself by then. We'll go back the creek someday when he's ready. His and my trip there was probably the best trip I've had, and it looks like we'll repeat it someday soon.
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charley
Feb 10, 2008, 3:40 PM
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It's good to hear your brother is ok and with a prognosis of being much better in time. You're still in my thoughts and prayers.
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bent_gate
Feb 10, 2008, 4:14 PM
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It's good to hear he's making progress. It's a lot of small steps and he's making them. Continued best wishes and prayers.
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wanderlustmd
Feb 10, 2008, 4:18 PM
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Glad to hear that the tumor is benign. Great news!! I'm sure he'll be back to his old self before too long. Keep us posted and good vibes.
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reno
Feb 10, 2008, 4:30 PM
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Slow steps, Angry, but steps in the right direction. Time, patience, hard work, and a positive attitude.
Stay strong.
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clausti
Feb 10, 2008, 4:36 PM
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oh, that is amazing news, man! so good to hear that hes getting better.
sounds like hes making really steady progress, and that he's gonna keep getting better.
what part of the brain did you say his tumor is in? the speech recognition and speech output are in diff places right? so they'll get better at diff times as the swelling goes down?
either way, that's cool to hear, and if he's feeling up to it, your bro's def invited to the wedding with you. be a good time!
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angry
Feb 11, 2008, 1:54 AM
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C
The tumor was primarily pituitart but was very large. I have a close friend with a pituitary tumor that is small and they aren't even looking at operating. So they aren't all created the same.
They've changed their mind on what type of tumor it was, I don't even know the name of what they settled on. Some version of an Astrocytoma (hello rad route name) but it's very rare apparently.
Imagine taking a jack and separating the two lobes of the brain to get deep at something down there between them. That's exactly what they did. So while it didn't cause any damage to the brain, it really screwed up the two lobes' ability to talk to each other. That is what is coming back.
We're looking at the permanent shunt surgery tomorrow, pending some bloodwork, so it should get him into his own room soon. Good thing, he's pissed.
Another aside, his body weight has dropped from 133 to 120 in the last month. He's visibly much skinnier. If anyone needs to lose weight, lay in a bed for a month.
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clausti
Feb 11, 2008, 2:00 AM
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angry wrote: C... Imagine taking a jack and separating the two lobes of the brain to get deep at something down there between them. That's exactly what they did. So while it didn't cause any damage to the brain, it really screwed up the two lobes' ability to talk to each other. That is what is coming back.
gotcha. well best wishes for an uncomplicated shunt installment, tell the buckaroo (is he too old for buckaroo??) congrats on all the progress, and advance congrats on future progress!!
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reno
Feb 11, 2008, 2:05 AM
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angry wrote: The tumor was primarily pituitart but was very large. I have a close friend with a pituitary tumor that is small and they aren't even looking at operating. So they aren't all created the same.
No, they're not. That's what makes oncology so difficult.
In reply to: Imagine taking a jack and separating the two lobes of the brain to get deep at something down there between them. That's exactly what they did. So while it didn't cause any damage to the brain, it really screwed up the two lobes' ability to talk to each other. That is what is coming back.
Gonna take time, bro. Brain cells don't exactly grow on trees, but give it enough time and the body will find a way to adjust or compensate. We're talking months, not weeks.
In reply to: Another aside, his body weight has dropped from 133 to 120 in the last month. He's visibly much skinnier. If anyone needs to lose weight, lay in a bed for a month.
He's young, he'll get it back soon enough.
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uhoh
Feb 11, 2008, 3:29 AM
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angry wrote: I'm sure a 16 year would love to hear that his older brother is posting on the internet about him using the bathroom on his own.
Dude, don't you know that's what older brothers are for?
I'm glad to hear he's doing better. It sounds like he's going to make a strong recovery.
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