Let there be hope...
Sunday, July 26, 2015
Thursday, July 16, 2015
Go Fund Me
As Robbie may have to have a bilateral hip disarticulation through a private surgeon we are raising funds to cover surgery costs and associated expenses. So as advised by a few people I have set up a Go Fund Me account.
www.gofundme.com/zd55ak5d
Professor Al Muderis, Australia's leading orthopaedic surgeon, has agreed to see Robbie again for reassessment. It was nearly three years ago that he first examined Robbie thoroughly. At the time totally opposed to a bilateral hip disarticulation. But recommended a double above knee amputation that was carried out on the 11th of December, 2013 at Penrith's Nepean hospital. The surgery was a 100% success for the purpose of removing pain in his lower legs and enabling me easier access for his personal care. But the amputations were not intended to address the excruciating pain in both his hips from bone spurs and arthritis that has led to Robbie living and sleeping in his electric wheelchair for nearly sixteen years and placing considerable strain on his entire spine. The amputations were a first step. But despite Dr Sorial reassuring us that further surgeries would be considered this has not eventuate as all other options have been dismissed.
Hip replacement is inappropriate and would still leave Robbie with two useless stumps that prevent easy access in cleaning him. Very fat stumps that are obstructing access to his stoma resulting in his need to now wear garbage bags as any wafer and bag becomes compromised.
Removing the heads of both femur bones would only leave the danger of the remaining bone riding up into the pelvic region due to muscle contracture from Robbie's particular cerebral palsy. And again cutting the ligaments and tendons entirely would not remove the problem of obstructing useless large stumps.
No surgeon has yet to advise us of any practical and beneficial alternative over that of the requested bilateral hip disarticulation.
The argument that such surgery 'might' make his condition worse has no foundation. Without the surgery he is deteriorating at a rapid pace. Which will soon result in him not being able to sleep in a bed or a wheelchair and no body will be able to care for him. He will then be placed in a hospital bed plied with heavy pain killers and sedatives and undergo a slow painful death. Or choke on his food like many with cerebral palsy have and inhale food leading to pneumonia and death from medications interfering with chewing and swallowing function. Robbie is already a high choke risk in his wheelchair sitting up straight! UNACCEPTALE alternative!!!
Nor will he loose his balance as he has no balance anyway due to clonus and the muscle contracture that gravitate him to toppling to his left side. He at all times has a side support and strap around his chest. With no clonus or muscle contracture Robbie would become stable.
Both Robbie and I do not believe there will be a major issue with phantom pain either. After his double amputation he did not suffer phantom pain to any high degree. To this day he only gets mild sensations and that is when he is stressed. Every one believed severe phantom pain would occur and that the amputations would not be a success.
I invite any surgeon or person dealing exclusively with individuals with cerebral palsy to a public debate on why he or she feels Robbie would be worse off given a bilateral hip disarticulation.
The argument that removing Robbie's legs could be a world first for someone with cerebral palsy so let's not go there is ridiculous and discrimitory. Medicine is all about world firsts. Progress after trails. Some trials work but many fail. I challenge anyone to contest me over why Robbie should not be able to decide his own fate when his fate soon will be death without surgery. Over the past 21 years surgeons have rebelled against surgical procedures he has had in the past believing such surgeries would 'destroy' his life. Nope! All treatments or surgery that Robbie has requested after becoming informed have been successful.
www.gofundme.com/zd55ak5d
Professor Al Muderis, Australia's leading orthopaedic surgeon, has agreed to see Robbie again for reassessment. It was nearly three years ago that he first examined Robbie thoroughly. At the time totally opposed to a bilateral hip disarticulation. But recommended a double above knee amputation that was carried out on the 11th of December, 2013 at Penrith's Nepean hospital. The surgery was a 100% success for the purpose of removing pain in his lower legs and enabling me easier access for his personal care. But the amputations were not intended to address the excruciating pain in both his hips from bone spurs and arthritis that has led to Robbie living and sleeping in his electric wheelchair for nearly sixteen years and placing considerable strain on his entire spine. The amputations were a first step. But despite Dr Sorial reassuring us that further surgeries would be considered this has not eventuate as all other options have been dismissed.
Hip replacement is inappropriate and would still leave Robbie with two useless stumps that prevent easy access in cleaning him. Very fat stumps that are obstructing access to his stoma resulting in his need to now wear garbage bags as any wafer and bag becomes compromised.
Removing the heads of both femur bones would only leave the danger of the remaining bone riding up into the pelvic region due to muscle contracture from Robbie's particular cerebral palsy. And again cutting the ligaments and tendons entirely would not remove the problem of obstructing useless large stumps.
No surgeon has yet to advise us of any practical and beneficial alternative over that of the requested bilateral hip disarticulation.
The argument that such surgery 'might' make his condition worse has no foundation. Without the surgery he is deteriorating at a rapid pace. Which will soon result in him not being able to sleep in a bed or a wheelchair and no body will be able to care for him. He will then be placed in a hospital bed plied with heavy pain killers and sedatives and undergo a slow painful death. Or choke on his food like many with cerebral palsy have and inhale food leading to pneumonia and death from medications interfering with chewing and swallowing function. Robbie is already a high choke risk in his wheelchair sitting up straight! UNACCEPTALE alternative!!!
Nor will he loose his balance as he has no balance anyway due to clonus and the muscle contracture that gravitate him to toppling to his left side. He at all times has a side support and strap around his chest. With no clonus or muscle contracture Robbie would become stable.
Both Robbie and I do not believe there will be a major issue with phantom pain either. After his double amputation he did not suffer phantom pain to any high degree. To this day he only gets mild sensations and that is when he is stressed. Every one believed severe phantom pain would occur and that the amputations would not be a success.
I invite any surgeon or person dealing exclusively with individuals with cerebral palsy to a public debate on why he or she feels Robbie would be worse off given a bilateral hip disarticulation.
The argument that removing Robbie's legs could be a world first for someone with cerebral palsy so let's not go there is ridiculous and discrimitory. Medicine is all about world firsts. Progress after trails. Some trials work but many fail. I challenge anyone to contest me over why Robbie should not be able to decide his own fate when his fate soon will be death without surgery. Over the past 21 years surgeons have rebelled against surgical procedures he has had in the past believing such surgeries would 'destroy' his life. Nope! All treatments or surgery that Robbie has requested after becoming informed have been successful.
Saturday, July 11, 2015
Hi, Everyone.
It is now day 15 of our sit-in at 50 Station Street, Penrith, NSW. We are under censorship by the Australian Federal Government and State governments; Australian Medical Association; and Australia Medical Board. All major and popular TV media programs such as 60 Minutes, A Current Affair and a list of others are fully aware of our story but have not come near us. Nor has any papers outside the Penrith area as far as we know.
Please, anyone with media connections in other countries that are not owned by Rupert Murdock can you get our story out the internationally. Thousands of disabled, carers, very ill people and the indigenous are under censorship here in Australia. Australia hasn't earned it's place by the UN of being on of the worse countries for abuse and neglect toward it's disabled, indigenous and refugees for nothing!!! Help us please.
Our iPads were stolen from our tent. But we have now replaced them as I always set emergency money aside for such disasters. For Robbie it is a disaster as that is what keeps him relatively sane while confined to his wheelchair day and night! My iPad had photos that can not be replaced and my advocacy work/links in it!!!
Then yesterday early morning, Saturday, someone ripped the controls off of Robbie's hoist. Charming!
But we stay put. We will not move till a hospital publicly announces that it has found willing surgeons to save Robbie's life by allowing him the right to honor his 30 year need to have a bilateral hip disarticulation. Surgeons who genuinely live by their Hippocratic oath not to harm. Surgeons who do not indicate that it is acceptable for a patient to go home and suicide along with his or her carer when both their lives can be saved. How shameful for any doctor or surgeon to have such an attitude! What shame they bring on other honorable men and women in the medical profession who fight daily to save the lives of their patients without discrimination or fear.
Robbie also on facebook. Please share. https://m.facebook.com/SaveOurRobbie
It is now day 15 of our sit-in at 50 Station Street, Penrith, NSW. We are under censorship by the Australian Federal Government and State governments; Australian Medical Association; and Australia Medical Board. All major and popular TV media programs such as 60 Minutes, A Current Affair and a list of others are fully aware of our story but have not come near us. Nor has any papers outside the Penrith area as far as we know.
Please, anyone with media connections in other countries that are not owned by Rupert Murdock can you get our story out the internationally. Thousands of disabled, carers, very ill people and the indigenous are under censorship here in Australia. Australia hasn't earned it's place by the UN of being on of the worse countries for abuse and neglect toward it's disabled, indigenous and refugees for nothing!!! Help us please.
Our iPads were stolen from our tent. But we have now replaced them as I always set emergency money aside for such disasters. For Robbie it is a disaster as that is what keeps him relatively sane while confined to his wheelchair day and night! My iPad had photos that can not be replaced and my advocacy work/links in it!!!
Then yesterday early morning, Saturday, someone ripped the controls off of Robbie's hoist. Charming!
But we stay put. We will not move till a hospital publicly announces that it has found willing surgeons to save Robbie's life by allowing him the right to honor his 30 year need to have a bilateral hip disarticulation. Surgeons who genuinely live by their Hippocratic oath not to harm. Surgeons who do not indicate that it is acceptable for a patient to go home and suicide along with his or her carer when both their lives can be saved. How shameful for any doctor or surgeon to have such an attitude! What shame they bring on other honorable men and women in the medical profession who fight daily to save the lives of their patients without discrimination or fear.
Robbie also on facebook. Please share. https://m.facebook.com/SaveOurRobbie
Monday, May 18, 2015
SAVE OUR ROBBIE!
Hi, All.
It's been sometime since Robbie's double above knee amputation. It has been a total success for what it was intended for with no complications whatsoever.
Robbie was assured that further operations would be considered in the future to tackle the arthritis and bone spurs in his hips but a few doctors have decided this is not going to happen. So since the amputation on 11th December, 2013, Robbie has not spent one night in a bed. His condition is worsening as seen by the images I now post of recent spine, neck and hip. Robbie and I have begged for him to have the bilateral hip disarticulation he first wanted. But the reply is a big NO. All other options have been ruled out it seems. Robbie said if he didn't get help he will soon have to be placed in an institution or hospitalised where he will then die. Some of the doctors see no problem with that scenario. Well, we do see a problem! Don't you all out there see a problem?
Image of Robbie's spine two years ago. Below images of Robbie's spine, neck and hips today. Significant change! HELP!
Deliberately letting another person with cerebral palsy die needlessly because of inappropriate 'care' or inaction regarding surgeries is negligence of the highest order. Another weak excuse among the many was that this is new breaking ground for someone with cerebral palsy. What a load of bull dust. Risks are taken everyday in medicine and new ground successfully broke.
So in an attempt to yet again save my friend's life I have started a campaign. SAVE OUR ROBBIE! It involves emailing three individuals a letter Robbie and I composed showing how many people care for and love him and will not allow their friend to die because of some surgeons' inaction and reluctance to find someone with the courage and respect to help Robbie. The three, Professor Al Muderis, Fiona Scott (MP) and Dr Rami Sorial wish to help Robbie but without people behind them for reassurance that they are not responsible for any bad out come, their hands are tied. Professor Al Muderis and Dr Sorial do not necessarily have to be the ones performing the disarticulation though Robbie and I would love Professor Al Muderis to be allowed if he so chooses but since he is a private surgeon he can not operate on Robbie apparently. Bloody red tape!!!
Professor Al Muderis, Fiona Scott and Dr Sorial have been notified that they should expect a few emails soon in support of Robbie's informed choice to risk disarticulation. After all he's going to die soon if he doesn't get the help he has asked for so what's the issue!!!
Please note that Professor Al Muderis and Dr Sorial may not necessarily be in agreement with Robbie to have the disarticulation and should naturally not be forced to perform such a procedure against their will. All we are asking for is to find confident and competent known orthopaedic and vascular surgeons to perform the bilateral hip disarticulation so as to save Robbie's life.
The letter can be found at a site I have created for the SAVE OUR ROBBIE! campaign at www.saveourrobbie.blogspot.com .
A big thank you from Robbie and myself.
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