Robbie, the FREEEEEE amputee!!!

 

11-12-2013. Last photo together with our furry family five hours before Robbie's double above knee amputation surgery. Robbie's companion dog, Feather, the long haired Chihuahua; Bun the rabbit; Russell, the Jack Russell and Harry, our pound rescue English Pointer.

 

 

Big thank you from Robbie.

 

 

 

Reading a book while waiting to be called for surgery.

 

 

Waiting Room Chat.

 

 

Waiting to be wheeled away to surgery.

 

 

Couple hours after surgery. "This is the most comfortable I've ever been in a bed in my entire life", was one of the first things Robbie said. The weight of his legs are no longer pulling on his back.

 

 

Not 24 hours after surgery and Robbie's sitting up in bed for the first time in his life without pain and not looking like a human pretzel. He enjoyed his first meal in comfort.

 

 

Friday, the drains were removed.

 

 

Playing with his iPad briefly during five hours of sitting up. This was totally impossible previously.

 

 

 

"My stumps. My stumps. My stumps!!!"

 

 

 

Good-bye legs. Good-bye old life.

GOOD-BYE PAIN!!!

 

AMPUTATION UPDATE: 26-12-2013

 

 

 

Straight after initial dressings removed (18-12-2013) only seven days  after the operation.

 

Relief! First time in wheelchair (19-12-2013) eight days after surgery and so comfortable.

 

 

 Above: 18-12-2013

 

 

Two weeks after the surgery. Healing well.

 

 

Above: First acupuncture session for phantom (fake) pain 21-12-2013. Robbie feeling very relaxed. Effect lasted a few hours. But the pain is gradually fading and look forward to the next session.





HAPPY 2014 EVERYONE :-)



 

PAPAW OINTMENT SUCCESS!

 

Since Robbie's been home the past six weeks I've been applying papaw ointment on the raw skin under his stoma area and also the other side that was inflamed. Two weeks with only cloth nappies as the wafers naturally won't stick to the oil based papaw ointment. After a couple of weeks the skin cleared up totally and enabled the fixing of wafers again!!

 

 

Above is what Robbie's skin looked like about seven weeks ago. While in the hospital we were given a hard time by a couple of nurses. Which was very unusual as it's generally the nurses who keep us sane after dealing with obstinate, judgemental and arrogant doctors. Leaving the hospital one nurse had convinced the others that Robbie did not suffer psoriasis but a fungal infection and also claimed he was allergic to the Hypafix - which is low allergy (fortunately not all agreed). I've been using for many years Hypafix to keep the wafers on! When Robbie's psoriasis flares up it has nothing to do with the Hypafix.

 

 

Above's an image just before changing the wafer that has been fixed down with Hydofix for four weeks during several wafer changes after cloth nappies were no longer required. Note faeces under the wafer that had been there for about three days in direct contact with bare skin. Faeces Robbie and I decided to leave demonstrating what happens to his skin if solid faeces is in contact with his skin for a long period of time. Watery stools burn but not solid.

 

 

Faeces stuck to skin.

 

 

After clean up no sign of skin irritation or burning. Treated with ice as usual to kill any bacteria and sooth the area after any rubbing necessary during cleaning that could have broken the skin but not visibly noticeable.

 

 

Lifting up Robbie's belly to expose the crease area free of inflammation or psoriasis.

 

Placing on fresh wafer with application of paste filler. Still have not been given wafers that are indented to conform with Robbie's slightly sunken stoma. Must chase that one up.
 

 

Application of four strips of Hydrofix; one strip for each side. We've been using this tape for over ten years. It helps keep the wafers fixed and also prevents the faeces leaking out quickly when it has pancaked (crept under the wafer).

 

 

Wafer with added 'ring' to fill the indentation and some paste as an extra measure.

 

Papaw ointment is applied on the crease under the belly, in the leg creases and on the scrotum. Then placing of the usual cloth nappies to separate skin folds, absorb moisture and prevent the oil compromising the Hydrofix. Nappy always there to catch any faeces if there is leakage.

 

******

 

Today's the 25th of October and since applying papaw ointment to Robbie's groin area and under his arm pits many weeks ago he's been mostly free of his psoriasis...as long as cloth nappies are still placed between his skin folds.

 

His face still breaks out but I've noticed heavy applications of sorbolene like a face mask every few days is helping prevent severe break outs that have left him in the past looking like he's been attacked by a blow torch. I'd smother his face with papaw ointment but being greasy it would not be pleasant and he'd rub it off unintentionally and get it all over his iPad and anything else he touched. 

 

 



CEREBRAL PALSY AND ACUPUNCTURE.
(This page documents Robbie's acupuncture sessions and my foot massage and detox spa. Updated every two weeks.)

Robbie's not had any further acupuncture since the 19th of October as he's feeling very distressed and unsafe in his malfunctioning wheelchair. He's refusing to leave the house unless for an appointment with surgeons regarding removal of his lower legs. And then we have to take a taxi. Fortunately, his contracture pain is still bearable and generally non existing since the acupuncture and only takes pain killers rarely when his hip arthritis is playing up.

****

19th October: Robbie had a forth session of acupuncture that is keeping his leg contractures at the tops of his legs at bay in a big way. Jack, the acupuncturist, is now also working on seeing if some of Robbie's spasticity in his arms can be released. Time, like with all things, will tell.

 

29th September: Robbie had a second session of acupuncture yesterday as he's been experiencing swinging 3-5 out of ten pain levels the past six or so days. Eased somewhat with pain killers. Today, the day after second session, he is free of pain relating to muscles and tendon contracture. The only pain he's presently experiencing is arthritic pain in his right hip and found relief with 400 mg of Ibuprofen.

It looks as though Robbie also suffers restless leg syndrome as his legs start to twitch at night and finds relief by taking two Kava tablets.

The only other pain is the dead weight of his lower legs pulling the tops of his legs. Foot plates do not provide relief as his feet are too sensitive to rest on any support. Supporting the feet also moves the ball and socket out of it's favourable position and results in pain.

22nd of September: 7 days after acupuncture mentioned below. Robbie started to have bad pain again today and needed pain killers. So will take him to the acupuncturist this coming Saturday for another session.

September 14th: Due to the unbearable pain Robbie's been experiencing for the past six weeks he had a session of acupuncture on Saturday afternoon, 14th September. His pain levels went from a seven out of ten to a 'point five' out of ten! So presently he's pretty much free of pain as long as he doesn't move. Before he was having pain and spasm even when still and needing pain killers and very expensive Kava in tablet form from a health store. I'll make another appointment for him for this coming Saturday or when he requests one. The acupuncturist only works Saturdays, apparently.

 

His hip's ball and sockets are not rubbing together as hard now due to the relaxing of the muscles since the acupuncture. Which also results in less pain with the arthritis.

 

Robbie has an appointment this week with the surgeon who performed the tendon releases and another colleague who has yet to meet Robbie. This was booked before thinking about the acupuncture. But Robbie needs to see him anyway regardless of the acupuncture and any success with containing the pain. Like Robbie keeps saying till he's blue in the face; no matter how much tendon release he has he still will not be mobile or be able to sleep in a bed as long as he has his very painful and useless legs. It's just not right. Others who don't have cerebral palsy have had useless limbs removed so they are mobile or freed from pain. Thirteen years living and sleeping in a wheelchair!! His back is starting to fuse but to a couple of doctors this is not an issue and have no regard for any recommendations from a world leading private orthopaedic surgeon we saw some months ago.

 

Didn't take any photos of acupuncture session but will next time. Below is the picture I showed the acupuncturist before the session. Explained the surgeries Robbie apparently had and what tendons and muscle might be presently causing his pain, emphasised in the image. The acupuncturist is Chinese and trained there both as a doctor and acupuncturist. I've always believed in a holistic approach. I can not take Robbie to China for treatment so this is the next best option.

 

 

Due to the easing of debilitating pain Robbie was able to attend Karaoke for the first time in months yesterday evening!!

 

 

NOW to a totally different issue...

November 3rd: Forth session of foot massage and detox spa.

 

Seconds after ion cleanser turned on.

 

Five minutes into treatment.

 

Twenty minutes.

 

Thirty minutes.

 

The lady next to me was also having a detox spa and her water after the half hour session was only slightly mucky looking. A bit like my five minute photo. It was nice to have a comparison.

It's two months since my first detox spa. My joints are less stiff and sore.

October 13th: Third detox session.

 

 

 

September 29th: Had my second session of foot massage and foot spa detox.

 



September 15th. 5 Minutes                September 29th. 5 Minutes

 

The first image above is five minutes into my first session on 15th of September. The second image is five minutes into my session today, 29th of September. Note that the water is darker after the same time period and that the left side is darker around the left foot which continued for the whole half hour. I decided not to move my feet to see if the liquid remained darker on the left; which it did. Unlike my first session that was uniform in colour distribution and less cloudy by the end of the session. I had a much more intense foot massage with todays second session so perhaps one side of the meridian was flowing more for the detox.

 

September 15th: The day after Robbie's first acupuncture session I had a foot massage and for the first time tried the detox foot spar. Very interesting!!

 

So below are some photos and a couple of video clips of the process taken on the 15th of September.

 

    

 

  0 minutes.           5 minutes

 

 10 minutes.         15 minutes.

 

 

   20 minutes.         30 minutes.





 

 

 

 

Sample of sediment settled quickly leaving crystal clear liquid above. This under scores the fact that heavy metals and so forth are extracted from the body. Booked in for another detox in a fortnight. My body needs all the help it can get. Expensive but I'm determined to live longer than some would like!!



 

 

Above: About 20 minutes into the ion detox spar.

 

 

Stirring up the resulting sediment. 

 

 

 

 



"O, to be in CHINA"
 

Wouldn't treat a dog the way some of the doctors are treating the disabled and their carers here in Australia. Help me! Help us!

What words other than cruel and inhumane could describe any doctor stating that it was not important that I be mobile and capable of independently rolling myself over in bed. Or mobile for any other activity either. That an amputation of my painful, useless, dead weight lower legs was not going to happen though there are doctors wishing to do this for me.

But, as I am part of the public medical system here in Australia, I am prevented from accessing this life changing surgery. And it seems Hon. Jillian Skinner, the Health Minister and the HCCC (Health Care Complaints Commission) have turned their backs on me. As they have on others. For it seems they are controlled by a handful of powerful doctors suggesting they 'drop it'. She recently commented on the bullying within the medical profession but nothing much has or will be done about it. Just all talk as it seems the rot has spread too deep.

Many severely disabled in Australia are deliberately confined to wheelchairs as it is so much more 'convenient' for those on pay roles to 'care' for someone like me. I do know as I've experienced out of home care environments. Denied proper physio and medical treatment that leads us to being more handicapped then we should be. Placing more burden on our family, friends and carers.

Too many handicapped end up institutionalised unnecessarily due to the lack of appropriate support. Some in the medical arena who I've met recently see no problems with my carer burning out and being forced to place me permanently in a home where these professionals admit I'd not receive adequate and/or appropriate care and die early. I don't mind dying. In fact, with all that is happening and apparently not going to happen, I want to die. I just don't want to die a painful undignified death like so many others before me who could have lived. I don't have to be institutionalised and die if only I was allowed the medical treatment suggested by a world leading orthopaedic surgeon.

My carer has told me on several occasions that he wishes he could take me to China and stay there. For in China there's world class treatment for those with cerebral palsy and deep respect for those caring for the handicapped; they actually get support. Russia sends annually 60 children to China for treatment and has been doing so for some years now. http://cpcerebralpalsytreatment.com/russian-children-with-cp-travel-to-china-for-treatment/ But here in Australia only a handful of children get what they really need within Australia. And the adults...well, that's solved by just employing more people who generally don't know how to handle those with cerebral palsy; just take them shopping and on outings - while remaining totally wheelchair bound - instead of combining outings that would actually have them physically active in some way to decrease physical degeneration cause by physical inactivity.

I just don't know what to do. I feel so helpless and powerless in a country that professes to be so free and care so much for it's vulnerable when it doesn't. Hon. Jillian Skinner and HCCC, please, break the silence. Help me and so many others.

                              

 

 

Above images are of me as a youngster. I was so active; arms so strong and straight. But I did not receive any appropriate physio as I grew older. Just placed in a wheelchair. I want my life back.

 



So presently my desires and dreams to become a volunteer and get out in society is far away and may remain so. Instead, I am now mostly confined to home watching TV and playing on my iPad. No, I do not like being a couch potato and neither does my carer. I so loved climbing up and down stairs and playing on the floor as a child; interacting. All that was taken from me when some professionals at my school advised I be placed in a wheelchair at the age of 12. From that point I lost my mobility and became a prisoner of my body that quickly seized up and a prisoner of wheelchairs.