Just found out that my fiance's little brother diagnosis of cerebral palsy was wrong. 
This kid has been through so much in his life. He was first diagnosed with Cerebral Palsy (CP) when he was 2. Not as severe of a case as could have been, he is still all mentally there, but has slow/poor motor skills and cannot walk. The doctors said he would not live past 5. He is 18 now. When he was 4, he developed chronic respiratory problems that prompted doctors to give him a trach (sp? hole in the trachea that has the tube that respirators hooks up to a respirator). His doctor said he should out-grow it, but shortly after that, the doctor left and completely forgot about him. Since then, he has had surgeries to correct bone growth, died twice (obviously been recussitated), and has had to sleep on a respirator every night. Even through all of this, he is still the most optimistic person I know. Life has basically sh!t all over him, and he still finds the brightest part of life.
Flash foreward to this week...
He recently has been having some tests on him to see if anything can be done to help him. He went in for an MRI on monday. Turns out that he doesn't have CP afterall. Turns out that he possibly had a neck injury on his upper most vertebre (right where the brainstem connects to the spinal chord, right where his respiratory system is controlled from) that has had scar tissue growth. As he's grown, the scar tissue has gotten worse, putting pressure on and constraining his spinal cord and brain stem. He has lived his whole life thinking that there is nothing that could have been done to correct him, and now that all this irreversible damage has been done, he finds out that he could have had an operation when he was 2 that could have corrected nearly everything. Now, he has to have this surgery or he will die, and soon. If he lets it continue, the scar tissue will eventually inhibit his respiratory system from functioning completely, he'll stop breathing... and die. And to worsen the situation, he has about a 50/50 chance of the operation being successful.
All this because of a careless, irresponsible doctor. (Edit: had the wrong parentheses)
His mother plans on suing, but we don't know what else we can do. I am so...... I don't even know how I feel. GRRR!!!! I can only imagine how he feels. This week has been hell for his family.
Beau
UPDATE: 12/10 11:00 PM MST
Just got back from a grueling 8.5 hours of surgery. Found out exactly what the status of his ailment. Turns out that his first vertibrae was not properly seated to his skull, thus every time his head was turned, jarred, or disturbed, it injured the cartilidge surrounding his brainstem, causing a build-up of scar-tissue. After 18 years of this, his brainstem's radius (which should be relatively 1") has been reduced to less than 1/16" .
Into surgery he went. First they went through his mouth and removed the scar tissue from arround his spinal cord. Then the flipped him over and removed his top vertebrae all-together. They then took a section of bone from his hip and fused it to his second vertebrae and his skull and then fused his second a third vertebrae so that he has a firm base for his skull. And to top it all off, they put a titanium pin from his third vertebrae, through his second and into his skull. It kind-of effects his turning and tilting abilities, but not too bad.
Anyway, he is still in recovery and I will probably be spending a good majority of my week and weekend with him. We'll start talking to lawyers after he gets out and is more coherent.
Beau
Update 12/11 1:06 MST
Just got off the phone with his mom. He is awake and a bit groggy, but overall, he's okay. He wants me to bring my PS2 and a TV down to him... LOL... after all this, all he wants to do is get back to playing games. I'll probably be down there every night 'till he's better. They think they are gonna get him up and moving around by Friday. Can't wait for that.
This kid has been through so much in his life. He was first diagnosed with Cerebral Palsy (CP) when he was 2. Not as severe of a case as could have been, he is still all mentally there, but has slow/poor motor skills and cannot walk. The doctors said he would not live past 5. He is 18 now. When he was 4, he developed chronic respiratory problems that prompted doctors to give him a trach (sp? hole in the trachea that has the tube that respirators hooks up to a respirator). His doctor said he should out-grow it, but shortly after that, the doctor left and completely forgot about him. Since then, he has had surgeries to correct bone growth, died twice (obviously been recussitated), and has had to sleep on a respirator every night. Even through all of this, he is still the most optimistic person I know. Life has basically sh!t all over him, and he still finds the brightest part of life.
Flash foreward to this week...
He recently has been having some tests on him to see if anything can be done to help him. He went in for an MRI on monday. Turns out that he doesn't have CP afterall. Turns out that he possibly had a neck injury on his upper most vertebre (right where the brainstem connects to the spinal chord, right where his respiratory system is controlled from) that has had scar tissue growth. As he's grown, the scar tissue has gotten worse, putting pressure on and constraining his spinal cord and brain stem. He has lived his whole life thinking that there is nothing that could have been done to correct him, and now that all this irreversible damage has been done, he finds out that he could have had an operation when he was 2 that could have corrected nearly everything. Now, he has to have this surgery or he will die, and soon. If he lets it continue, the scar tissue will eventually inhibit his respiratory system from functioning completely, he'll stop breathing... and die. And to worsen the situation, he has about a 50/50 chance of the operation being successful.
All this because of a careless, irresponsible doctor.
(Edit: had the wrong parentheses)His mother plans on suing, but we don't know what else we can do. I am so...... I don't even know how I feel. GRRR!!!! I can only imagine how he feels. This week has been hell for his family.
Beau
UPDATE: 12/10 11:00 PM MST
Just got back from a grueling 8.5 hours of surgery. Found out exactly what the status of his ailment. Turns out that his first vertibrae was not properly seated to his skull, thus every time his head was turned, jarred, or disturbed, it injured the cartilidge surrounding his brainstem, causing a build-up of scar-tissue. After 18 years of this, his brainstem's radius (which should be relatively 1") has been reduced to less than 1/16" .
Into surgery he went. First they went through his mouth and removed the scar tissue from arround his spinal cord. Then the flipped him over and removed his top vertebrae all-together. They then took a section of bone from his hip and fused it to his second vertebrae and his skull and then fused his second a third vertebrae so that he has a firm base for his skull. And to top it all off, they put a titanium pin from his third vertebrae, through his second and into his skull. It kind-of effects his turning and tilting abilities, but not too bad.
Anyway, he is still in recovery and I will probably be spending a good majority of my week and weekend with him. We'll start talking to lawyers after he gets out and is more coherent.
Beau
Update 12/11 1:06 MST
Just got off the phone with his mom. He is awake and a bit groggy, but overall, he's okay. He wants me to bring my PS2 and a TV down to him... LOL... after all this, all he wants to do is get back to playing games
. I'll probably be down there every night 'till he's better. They think they are gonna get him up and moving around by Friday. Can't wait for that.
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