This is what the bastard of an inept but oh so flamboyant hairdresser did to my hair just before the wedding and there was not time to fix it so he turned me out in a french roll...the like of which is "nooo me"...I looked like BronnieBishop - friends... Our Bronnie. Aussies will know who I mean.
Yet Melissa and the four bridesmaids had such perfection...guess I can't complain being old and invisible (ohhh! sob sob)
The wedding was perfection ( shame about my hair!) and good fun too even if sad also.I'll do more about the wedding soon.
I am to go back down to Sydney Thurs. for this "show" Inquiry on Royal North Shore Hospital and give my evidence. Before I go I'll do a bit of a trawl through my links...have missed you all a tad.
This is the guts of what I will be saying at the Inquiry...suggestions? Am open to them....
NSW State Government Inquiry Into the Royal North Shore Hospital
I hope you have read all of my submission.
Hopefully this Inquiry will go a small way into obtaining some justice for the victims and relatives who suffered such disgusting neglect whilst supposedly being cared for in RNSH, but no matter what happens here our family will not give up on setting to rights the appalling cruelty my husband and our children’s father Don endured with so much dignity. I will follow through all the avenues I am able to take some of which I have already begun.
My husband Don went to RNSH we thought, to have a simple lung drain and biopsy - It wasn’t an emergency operation. I must mention here that in the whole five and half weeks he was in hospital they did myriads of testing, they found nothing to explain this fluid.
Dr M performed an operation called a Pleurodesis. There was little chance that Don was going to survive that operation. We now know that you never do a Pleurodesis at the same time you do a biopsy; a high dose is always suspect; should never do it on someone who can’t fully expand their lungs; should not do it whilst there is any fluid in the lungs. These were all ignored. He had such marginal respiratory reserves and his state of health along with his Quadriplegia meant he was already quite debilitated before the unnecessary and dangerous surgery was done on him so bizarrely soon, after he arrived from Port Macquarie, as I was still driving down.
The next issue is the criminal neglect he suffered in the almost three days after his operation for which Cardio Thoracic and Spinal deserve censure. They all missed the very visible signs of Don’s impending Respiratory Arrest from the failed Pleurodesis. He was struggling to breathe and began to hallucinate because, as I now know, there was a build up of CO2 in his system. His shoulders going up and down and his tongue moving in and out of his mouth as he tried to breathe. The Cardio Thoracic team’s Dr H says that “they were unconcerned” which I find amazing. They didn’t seem to understand Quad breathing which makes it harder to breathe if you are sitting upright… the opposite of the rest of us. They should have. They ordered him sat up in his wheelchair, he quickly got worse. At about 2pm I begged them to help me get him back into bed. I was told to wait till the lift round at 3.30. They turned up at 4.30.
I still see all of this in my head. You really have to read that part of my submission to understand what was happening. Every half hour I would go to whoever I could find to get help for my husband…not one of my concerns is noted. They never in Spinal and soon in Intensive care noted their failures to act…they don’t appear in any notes. We were fobbed off…then finally he had the first respiratory Arrest early in the morning.
He had no chance of survival after that… he knew that. I knew that.
So off to ICU where he would spend five weeks where they tried to get him to breathe again by extubating and reintubating him several times allowing him to come very close to further respiratory arrests before they would reintubate him. Shocking, shocking treatment for him to suffer and for us to have to watch. It was cruel to watch, but how much more so for the person suffering.
One time when they extubated him, no one took any notice of me when I warned them he was looking the same as he had in Spinal pre arrest…they just ignored me apart from Physio who recorded this…Physio were wonderful. He went up to 50 breaths per minute…not written down anywhere of course. We saw it on the monitor and the nurse got quite angry with us and said “what are you worrying about” and either turned the screen away or switched it off. She said that his tongue going in and out rapidly was that he was trying to talk. Intensive care. One nurse one patient. Then all hell broke loose and we were hustled out again.
One time when a nurse was suctioning Don a part of the equipment fell onto the floor. Two of us saw that nurse pick that bit up and put it back in my husband’s mouth. Bold as brass. This was only days before Golden Staph and Klebsiella Pneumonia invaded his lungs so disastrously.
My lovely husband laid in ICU for five weeks with his arms tied to the bed, both lungs now filling up with fluid constantly, body full of infection – sepsis they called it. He was full of excess fluid. He caught MRSA first in the arterial line, then in his lungs, Klebsiella Pneumoniae in his lungs, Candida all throughout his mouth and no doubt in his whole system. The place was filthy beyond words. There was no continuity of care with staff and much off doctors and nurses notes are illegible which made this lack of continuity dangerously worse.
The lack of hygiene in ICU was shameful. Infection control is almost non-existent. In isolation they use a throwaway plastic bib type apron which only covers about a third of your body and clothing. Apparently the Staph and other dangerous germs don’t go on the arms, sides and back of the body…
My sister who is a Renal Dialysis nurse was horrified (this towards the end) when she noticed that they had turned off his fluids but still had Don on a large amount of Lasix. And anyone who has any medical knowledge would find this shocking. If she hadn’t picked up on this, his last days would have been even worse torture than they were and he may have also endured the sickness which goes with Renal Collapse.
Another time our eldest daughter Melissa was with us and we noticed that he was very nauseous from something. We saw that a lot of clear fluid was coming out of his mouth and running down into his beard. We called his nurse over so she could suction him so he didn’t choke. She was quite begrudging and on her way over complained that she’d just suctioned him. She suctioned him and then walked off. So we tried to clean him up as best we could. Then it began again and we had to call her over again. He was her only patient. She was quite angry. We told her he was really sick and could she give him Maxalon in the drip as this worked well on nausea for him. By this time it was behind his neck, down behind his head and underneath his shoulders. He was cold and shivering feeling really ill. Because he had so many tubes, I can’t remember how many…he seemed to have tubes and wires coming from everywhere, we asked her to help us clean him up because we were afraid of disconnecting something. She told us he’d have to wait for the lift round. That was that. We cleaned him up and got under him as best we could and he watched our faces with the saddest eyes. Poor Don. How could she do this to him?
These incidents are not just odd ones out of the ordinary. Every day things like this happened. Occasionally you would have really good nurse and they deserve huge praise for having to endure the bad nursing of the others. You see none of the nurses had name tags so you could never remember names the next day…it was one on one nursing but if you were there long enough you might see three different nurses a day looking after him. We were there for five weeks.
He suffered. I have never seen suffering like that. I am 53 years old. I have seen some terrible things. We spent 3 months with his sister as she died from Cervical cancer, horribly. I watched my mother struggle with end stage Cardiomyopathy and other things wrong, was present during all of Don’s original hospitalisation for seven months when he broke his neck in 1982 and in between have seen and experienced the worst of human cruelty towards him at times but his last five and a half weeks spent in RNSH were just horrible torture too extreme; all of which should have been avoided had Dr M had not done that original dangerous and unnecessary surgery.
But once done, he should have been treated with compassion in ICU. RNSH caused the damage, but when he was overloaded on CO2 and their hotch potch of ever-changing medication and was hallucinating many of them treated him as if he was an imbecile and with cruelty.
There were a few nurses and doctors who understood what was going on and I wish I could remember who they were. They have my eternal gratitude. They should all have been like that to any ill and suffering human being. On the days when the real nurses were on Don would be so different. It made me wonder what happened to him when we weren’t there. He was unable to be talk because of the ventilation tubes and eventually the trachea. Sometimes when I came in I could sense that something was terribly wrong and he tried to not allow some nurses to touch him when I was there…others - the good ones, he would do his best to be cooperative when he was able.
We have to live now with five weeks of a horror movie inside our heads which plays over and over…even as you talk to people, the images seem to be playing in your inner vision. How much worse must it have been for my husband and children’s dad to have to, without choice, experience the dreadful suffering which was inflicted upon him – arms tied to the bed, mouth gagged by tubes?
Once he was diagnosed with MRSA (Golden Staph) Don was to spend the rest of his life about four and half weeks in an internal pod like room. This room had no natural lighting. (I would turn the lights off to give his eyes a break from the bright fluoro light above his head...there was no halfway with this light... it did not turn down). The whole environment in this room was as if it was cut off from the outside, and only sometimes could we see a small patch of sky and that when we would ask if the curtain next door could be pulled back a little. On his last day there my sister was with him when a nurse came into the room and totally cut that room off by pulling the curtains right round his cubicle and across the door. She then sprayed right around the doorframe with some chemical as if he was already dead. He just shrugged at this…this was shocking and the nurse offered no explanation.
14th May. Don’s lungs were drowning in infection, apart from all the fluid, which was building up, and being drained from the right and left pleural areas of his lungs. He was grossly oedematous. He had a pressure area. He had Sepsis in his body from all the infection. He had developed Hypoalbuminemia. He was unable to be weaned from the ventilator as a result of the damage done by the failed Pleurodesis operation. They finally admitted that Don was dying, something we had accepted since those first days in ICU.
In all the time since Don had been in RNSH and with all that was going on I think that up till this time I had come across a Social worker once but can find no notation about that meeting. Now we were about to be drowned; almost assaulted in a sea of “concern”.
When it was explained by Dr T to Don that he was dying her notes record, “he has looked at me as if to say, ‘it took you that long to notice?’ and expressed excitement at being able to go home to die.”
I had asked was there anyway we could get him to our home to die. He had always hated being in RNSH and did not want to die there. Unheard of what happened next…he was flown home by air ambulance to Port Macquarie on a ventilator which would be removed we were initially told some time after Don arrived. Palliative Care and others have never come across the like of this in their whole career. RNSH said they would try and organise a ventilator from Port Macquarie for home, so that Don could have some time here and then choose when to turn it off. He was told that it was likely he would die a couple of hours after turning the ventilator off.
That never happened. Just before we left we were told they could not find one home ventilator in the whole of Port Macquarie. Don and I just wanted to go home so he could die with some peace of mind and not in RNSH. We would have agreed to anything at this stage. So within minutes of Don arriving home the ambulance began asking for the ventilator. His doctor allowed a small time and disconnected it. Don put his arm out to hold it a bit longer…he was home with all his loved ones! The doctor took his hand off the machine and firmly tucked it under the blanket. Don died a couple of hours later.
So even that choice and most sacred of human rights was taken away from him by the orders of RNSH and his GP. I question the legality of that whole event. The girls and I were just like robots by this time. My face felt prickly and numb during this time. Shock maybe.
The last four days of the time between 11th April and 17th May were bizarre. On reflection it felt as if we were a part of an orchestrated event, and are still puzzled by this time. Although Don wanted to be let die, the day he came home the girls and my sisters and I agreed that it felt like an execution.
I got a phone call a week or two later from RNSH asking me how Don was going after his discharge.
I am now in touch with the Coroner’s office, as it appears there should have been a coroner’s report done because Don died directly because of failed surgery. RNSH would have known that… but his “discharge” got them out of that mess. His GP should have known that also.
Early on in ICU, Melissa and I did hear Don say clearly something which still haunts us… he’d wanted the tubes out…clearly he wanted to die. So he chewed through a tube when we were there one day. On the out rush of the released air he looked us and said clearly, “help me!” We both have to live on with that desperate whisper in our heads for the rest of life. That was a shocking thing for a mother to see her daughter go through.
We hear about the poor nurses and doctors. I think the poor patients and their loved ones need to be considered first as a priority and those good nurses and good doctors be supported when they want to whistle blow, but I can’t see that culture changing. I don’t know how a new hospital or even cleaning up a hospital, especially just before the Inquiry, will stop what happened to Don. He was killed not just by filth; he was killed by bad attitude, and gross negligence.
God help us all.
I thank you for your time and patience.