Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 I would think rage directed at NF2 or the possibility of poor medical care would be permissible, . I understand totally. This is all very scary. na Joanie Update Hi All We have the results of Joanie's EEG are in and it is not good. The EEG taken yesterday showed minimal brain activity. Joanie's mother is there with here, and Joan shows no sign of recognizing her mother or responding to stimulus. At this point the prognosis is still uncertain as there is a chance she could recover from this. Either way, she will remain on life support in her current condition and they will perform another EEG (they didn't say when... but I would assume a few days to a week) to check on her condition. The doctors indicate that she could remain unchanged for months. The best response we can do right now is pray for Joan and her family. Pete Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 I would think rage directed at NF2 or the possibility of poor medical care would be permissible, . I understand totally. This is all very scary. na Joanie Update Hi All We have the results of Joanie's EEG are in and it is not good. The EEG taken yesterday showed minimal brain activity. Joanie's mother is there with here, and Joan shows no sign of recognizing her mother or responding to stimulus. At this point the prognosis is still uncertain as there is a chance she could recover from this. Either way, she will remain on life support in her current condition and they will perform another EEG (they didn't say when... but I would assume a few days to a week) to check on her condition. The doctors indicate that she could remain unchanged for months. The best response we can do right now is pray for Joan and her family. Pete Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 Its standard with facial paralysis to tape your eyes closed when you sleep, they dry out badly. And since she is 24/7 asleep they are just protecting her corneas. They are prollynot taped closed all the time , but maybe. poor joanie. And susan, yes it is hard to understand. Sad as it is I saw Jimmys sisters go thru very much the same thing. (sorry jimmy I love ya). She had ANsurgery and something went horribly wrong, hada seizure too and was unable to move, talk, sign, or anything for 2 years before she died from other tumors. When I went to visit her and saw her on a respirator and completely unresponsive I about lost it, started shaking uncontrollably. it was that upsetting. Its about the worst thing one can imagine. Oh yeah, she was robbed of her vision to before she died, so total deaf, blind and paralyzed. funny the last thing she said to me when she was barely able to voice was " dont drink coffee, caffeine makes tumors grow " we were friends and lived at coffee shops before that happened. nf2 can be cruel. I have been having a hard time dealing with this (joanie). Have not been able to fall asleep since this happened, Watching someone go thru this with a " Disease " that you HAVE is not especially easy. we could all use some professional grief counseling. cindy > I`ve been reading this and that about Joanie these last weeks. I have been amazed and horrified at the treatment she has recieved, but then I thought, well I`m not there, and surely her doctors and nurses know what they are doing. But today, whats the expression............... this one takes the cake,,,,,,,,,,,,, " her eyelids taped shut " Why???? What possible good can taping her eyes shut do?? She is deaf, and someone has taped her eyes closed. > I`m just an ignorant New Zealander but..................BLOODY HELL. ! > kschutza@... wrote: HEY GANG..... > > LYN AND PAT CAME BY TODAY AND TOOK US OUT ON THE TOWN....WE HAD SUCH THE GOOD > TIME....BEST DARN FOOD I HAVE ATE SINCE I HAVE BEEN HERE. WE WENT TO SEE > JOAN BEFORE WE HEADED OUT....I THOUGHT SHE APPEARED TO BE DOING GOOD BECAUSE > HER EYES WERE NOT TAPED SHUT AND SHE LOOKED TO BE SLEEPING. BUT THE NURSE > TOLD US FOR THE LAST TWO DAYS SHE HAS NOT RESPONDED TO ANYTHING.....I FEEL > FOR HER SO PLEASE C0NTINUE THE PRAYERS....HOPING TO PASS HER SOME OF MY GOOD > LUCK. LOVE YALL > > KEVIN > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 I`ve been reading this and that about Joanie these last weeks. I have been amazed and horrified at the treatment she has recieved, but then I thought, well I`m not there, and surely her doctors and nurses know what they are doing. But today, whats the expression............... this one takes the cake,,,,,,,,,,,,,"her eyelids taped shut" Why???? What possible good can taping her eyes shut do?? She is deaf, and someone has taped her eyes closed. I`m just an ignorant New Zealander but..................BLOODY HELL. ! kschutza@... wrote: HEY GANG.....LYN AND PAT CAME BY TODAY AND TOOK US OUT ON THE TOWN....WE HAD SUCH THE GOOD TIME....BEST DARN FOOD I HAVE ATE SINCE I HAVE BEEN HERE. WE WENT TO SEE JOAN BEFORE WE HEADED OUT....I THOUGHT SHE APPEARED TO BE DOING GOOD BECAUSE HER EYES WERE NOT TAPED SHUT AND SHE LOOKED TO BE SLEEPING. BUT THE NURSE TOLD US FOR THE LAST TWO DAYS SHE HAS NOT RESPONDED TO ANYTHING.....I FEEL FOR HER SO PLEASE C0NTINUE THE PRAYERS....HOPING TO PASS HER SOME OF MY GOOD LUCK. LOVE YALLKEVIN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 I`ve been reading this and that about Joanie these last weeks. I have been amazed and horrified at the treatment she has recieved, but then I thought, well I`m not there, and surely her doctors and nurses know what they are doing. But today, whats the expression............... this one takes the cake,,,,,,,,,,,,,"her eyelids taped shut" Why???? What possible good can taping her eyes shut do?? She is deaf, and someone has taped her eyes closed. I`m just an ignorant New Zealander but..................BLOODY HELL. ! kschutza@... wrote: HEY GANG.....LYN AND PAT CAME BY TODAY AND TOOK US OUT ON THE TOWN....WE HAD SUCH THE GOOD TIME....BEST DARN FOOD I HAVE ATE SINCE I HAVE BEEN HERE. WE WENT TO SEE JOAN BEFORE WE HEADED OUT....I THOUGHT SHE APPEARED TO BE DOING GOOD BECAUSE HER EYES WERE NOT TAPED SHUT AND SHE LOOKED TO BE SLEEPING. BUT THE NURSE TOLD US FOR THE LAST TWO DAYS SHE HAS NOT RESPONDED TO ANYTHING.....I FEEL FOR HER SO PLEASE C0NTINUE THE PRAYERS....HOPING TO PASS HER SOME OF MY GOOD LUCK. LOVE YALLKEVIN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 when your eyes are open and do not close they can dry out and cause you more porblems...when they tape them shut they also put a moisture in there to help out. kevin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 I just want to say it was a priviledgs to get to know Joan and to be with her for the short time that we had together. She was a very beautiful, gifted person, and we both miss her a lot already. Knowing that this was coming hasn't made things much easier here either. Pete, please let Joan's family know that we're thinking of her and of them at this difficult time. Tears will be shed; may Joan not be soon forgotten. Love to all, and Tara _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 : This is a horrific way to go --- I got so sad just reading it. Did they ever figure out what went wrong from that surgery? How does she know that ccffeine causes tumors to grow? I'm an avid coffee drinker and the caffeine for some reason helps with dizziness. Sally (from Illinois) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 : This is a horrific way to go --- I got so sad just reading it. Did they ever figure out what went wrong from that surgery? How does she know that ccffeine causes tumors to grow? I'm an avid coffee drinker and the caffeine for some reason helps with dizziness. Sally (from Illinois) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 , I think you are correct. I don't think for a second that Joan got sub-standard care in any way. She had the best doctors and I am sure she had the best possible care available. I am sad to learn that Joan passed away. At the same time, her suffering is over now so perhaps there is some good to this. Re: Joan > when your eyes are open and do not close they can dry out and cause you more > porblems...when they tape them shut they also put a moisture in there to help > out. > > > kevin > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 , I think you are correct. I don't think for a second that Joan got sub-standard care in any way. She had the best doctors and I am sure she had the best possible care available. I am sad to learn that Joan passed away. At the same time, her suffering is over now so perhaps there is some good to this. Re: Joan > when your eyes are open and do not close they can dry out and cause you more > porblems...when they tape them shut they also put a moisture in there to help > out. > > > kevin > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 , What is this that caffeine causes tumors to grow !!!!!! Lord Mike drinks Pepsi like there is no tomorrow ... Could you please forward me info if you have any?? hugs Lois Re: Joan > : > > This is a horrific way to go --- I got so sad just reading it. > > Did they ever figure out what went wrong from that surgery? > > How does she know that ccffeine causes tumors to grow? I'm an avid coffee > drinker and the caffeine for some reason helps with dizziness. > > Sally (from Illinois) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 , What is this that caffeine causes tumors to grow !!!!!! Lord Mike drinks Pepsi like there is no tomorrow ... Could you please forward me info if you have any?? hugs Lois Re: Joan > : > > This is a horrific way to go --- I got so sad just reading it. > > Did they ever figure out what went wrong from that surgery? > > How does she know that ccffeine causes tumors to grow? I'm an avid coffee > drinker and the caffeine for some reason helps with dizziness. > > Sally (from Illinois) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 , What is this that caffeine causes tumors to grow !!!!!! Lord Mike drinks Pepsi like there is no tomorrow ... Could you please forward me info if you have any?? hugs Lois Re: Joan > : > > This is a horrific way to go --- I got so sad just reading it. > > Did they ever figure out what went wrong from that surgery? > > How does she know that ccffeine causes tumors to grow? I'm an avid coffee > drinker and the caffeine for some reason helps with dizziness. > > Sally (from Illinois) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 AMEN ....Everything happens for a reason, and the time to go will come for us all, no one will know the circumstances. Joanies tasks were finished here and I like to believe that is why she is gone. We are all here to learn, and to teach someone else something. and Joanie did that. I can see what an empact she had on so many lives. The doctors hands were Gods hands and we can't control that. Be well spiritually..............I am sure it is what Joanie would have wanted. Carol kschutza@... wrote: I told my mother I had a thought day before yesterday an should tell yall but I didn't...but will now. I think for the past days Joan and God were having negotions so to speak. Like when a person moves from triple A to the Majors. The teams is said to see the person go but they are going off to bigger and better things. I assure everyone of you that Joan is where she wants to be. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 AMEN ....Everything happens for a reason, and the time to go will come for us all, no one will know the circumstances. Joanies tasks were finished here and I like to believe that is why she is gone. We are all here to learn, and to teach someone else something. and Joanie did that. I can see what an empact she had on so many lives. The doctors hands were Gods hands and we can't control that. Be well spiritually..............I am sure it is what Joanie would have wanted. Carol kschutza@... wrote: I told my mother I had a thought day before yesterday an should tell yall but I didn't...but will now. I think for the past days Joan and God were having negotions so to speak. Like when a person moves from triple A to the Majors. The teams is said to see the person go but they are going off to bigger and better things. I assure everyone of you that Joan is where she wants to be. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 AMEN ....Everything happens for a reason, and the time to go will come for us all, no one will know the circumstances. Joanies tasks were finished here and I like to believe that is why she is gone. We are all here to learn, and to teach someone else something. and Joanie did that. I can see what an empact she had on so many lives. The doctors hands were Gods hands and we can't control that. Be well spiritually..............I am sure it is what Joanie would have wanted. Carol kschutza@... wrote: I told my mother I had a thought day before yesterday an should tell yall but I didn't...but will now. I think for the past days Joan and God were having negotions so to speak. Like when a person moves from triple A to the Majors. The teams is said to see the person go but they are going off to bigger and better things. I assure everyone of you that Joan is where she wants to be. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 : You have such a way with words ---- I believe Joan is with God too. Sally (from Illinois) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 : You have such a way with words ---- I believe Joan is with God too. Sally (from Illinois) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 : You have such a way with words ---- I believe Joan is with God too. Sally (from Illinois) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 hello. what helpse is tha duringthe day like after dinneri try t read some e mails. this way they areo all tankled up in te mornng. iwas busy last ight so ihave 130 to go through this morning. write when yiou can ad take care of yourself. love a cathy Quote Link to comment Share on other sites More sharing options...
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