Here we are again, the boy is now 10 years old. He has had what is arguably the best year of his short life. He has been a child, he has danced, he has acted he has shaken hands with royalty, supped tea with a prime minister and fine-dined with celebrities in great historic buildings. He’s visited the crown jewels and the most famous of toy stores. What more could a boy want?
His legs to work.
His tendons are too tight in both of his legs, they need to be released, he is now walking on tiptoe and he is using his wheelchair more and more often. He has no pain, it is part of his condition. But, he is struggling. He is tired with the effort.
An appointment with the orthopods has determined that surgery is the only way forward or the boy will stop walking completely. The operation date looms, it’s exactly one week after his 10th birthday. He will have both legs operated on to reduce the impact of anesthesia on his system. We faced a rather large problem with this surgery, his orthopaedic surgeon has now retired and we are dealing with the New Man in his place. The boy is greatly unsettled by the change and is struggling with the idea he will not see his friend ‘the boss’ anymore. This is the second orthopaedic surgeon he has come to trust who has retired from his position. It’s hard for the boy to comprehend.
The New Man is brusque in his attitude and inept in his ability to converse with children. Strange considering he is working mainly in children’s orthopaedics. A prosthetics man has been called in to work on the new team, GG is a diamond and is instrumental in creating a much smoother transition for the New Man with the boy. The boy likes GG, he’s met him before and they have a shared passion, NBA basketball.
Surgery day arrives. I could tell you the ins and outs of the hours and hours sat waiting, and walking, and waiting and sitting and worrying and worrying and worrying and… we shall leave it there.
The boy is in recovery, his surgery is over and the New Man is quietly optimistic that it has worked once again. The boy’s legs are casted and he is encased in plaster of paris from thigh to toes on both legs for 6 weeks while the tendons heal and the stitches dissolve.
Have you ever worn a cast? Broken an arm, or a leg, or an ankle? That six weeks is such a long and irritating time for anyone in that condition, even more so for the boy. He is 10 and can’t get back to his dancing, he can’t go to his new acting lesson, he can’t go to school, he has a home tutor for 3 hours a day, the rest of his education is on my head to teach him.
We are back in the world of the medical professional knows best. But he doesn’t does he?
You see, the New Man was not only inept in conversing with children, he was also inept at choosing a decent registrar to complete his work. The old surgeon, the boss, would never have done this, but the new man is too busy to set casts! He’s a surgeon you know, he can trust his man to finish up with the mundane task of casting!
Within two weeks of the casts being set on the boy’s legs, there was a problem with his foot. His toes were going purple. This obviously meant that circulation was poor, I took him back to the hospital and had them take a look. No, no, no, they said, that’s his condition causing the problem. Nothing wrong with the cast. It’s fine they said, go home and relax. You worry too much. We’ll have the boy back on his feet and his crutches in no time at all.
But it wasn’t fine. I wasn’t worrying for nothing, because less than a week later, we were back again at the hospital and I was arguing that the cast was definitely too tight, because now there was a bad smell coming from the foot and I wanted the cast removing immediately to check everything was alright.
A lot and I do mean a lot of huffing and puffing about overprotective mothers thinking they knew better than the professionals ensued, but I stood my ground, I argued my case, I ranted right back in their smug supercilious faces. I then went to an extreme threat. I quietly said that unless they did a check on his foot, I would be seeking a meeting with their superiors to discuss poor child patient care.
This netted the result I was looking for. They split the cast from his thigh to his toes and removed it. His heel had developed a huge plaster sore that had started to rot and was dangerously close to developing a huge infection, this huge infection could turn gangrenous if not combatted immediately. He could lose his foot.
The boy was admitted to the ward as an emergency patient, he then underwent a local anesthetic so the heel could be cleaned and packed with a silver dressing to remove the slough (infected and/or dead tissue). He was placed on the bed lying on his back with his leg elevated and his foot hanging over the end, free and clear so as no more pressure could be brought to bear. He couldn’t move off the bed, he was stuck there. FOR FIFTEEN WEEKS!
It took fifteen weeks for his heel to heal sufficiently, not completely, just sufficiently, before they could send us home. Yes, you read that correctly. Us. I had moved into the hospital for the duration of his stay because patient care was so appallingly poor and I no longer trusted the ward staff to look after the boy at all.
When he had been in hospital 4 weeks the ward sister told me, go home mum, take a break, we’ve got this, come back tomorrow. He’ll be fine. But they hadn’t got this, and he wasn’t fine.
In the event, I did go home to do some much needed laundry that we both required, but I came back much later that evening. I was gone for less than 10 hours. When I returned his bed was gone from it’s spot on the ward.
I went to the desk in a panic, my face must have been gray because the nurse asked if I was feeling alright, did I need to sit down? No I needed to know where my son was please?
Oh! He’s in the TV room, she flicked a disinterested wrist in the direction of the TV room and I nodded and went in there. He was crying, quietly, sobbing and pressing his call button but it wasn’t plugged in to the wall. He had needed to go for a pee, no one had come and he’d had an accident and he was wet, the bed was wet, the fucking floor was wet and he was devastated and embarrassed but no one had come and he was so sorry mum, he had made a terrible mess.
How long have you been like this I asked as I set about cleaning him up and stripping his bed from underneath him. Hours. he said. At least 4 hours. They brought me in here just after lunch time and put the tv on for me to watch. They gave me a button to press if I needed them but then tea came at 5 and I haven’t seen anyone since then. It was 10pm. He said he had pressed the button hundreds of times but no one came. In the end he was so wet he just cried. I cleaned him up, changed his continence pad and I cuddled him until he was calm again.
I told him I was going for fresh bedding for him and would be right back. I was incandescent with rage. I went on a verbal rampage of monumental proportions that to this day I am sure those nurses will remember with horror. I hope they still suffer fucking nightmares from the tirade of verbal abuse I rained down on their heads!
I cannot remember what I said. I was experiencing a red mist of undiluted raw anger and it engulfed my entire brain. I wanted to murder someone, anyone. If they were in the profession they were in mortal danger. I am proud of myself to this day that not a drop of blood was shed. Many, many of their tears were. Not enough. Never enough to compensate the tears my boy had shed though. Never enough.
After my verbal rampage, (yes, I was still having to deal with that zero tolerance policy that protected these lazy fuckers) three nurses materialised by his bedside, he had his bed made in quick time and he was transferred back to his spot on the ward. Not one of those lazy good for nothing fuckers apologised to him. Not one.
I never left the ward again until the day he came home with me. I took care of my boy, no one else. I was taught how to look after his heel by the tissue nurse, who provided me with enough dressings and sterile equipment to sink a ship on the day we were discharged.
The district nurses stepped in for his care in the home. We were now on week 16. That woman came to change his dressing and she arrived wearing a dirty uniform. She had some kind of white powder spilt down the front of her navy tunic and trousers. I assumed, wrongly of course, she would be wearing a plastic apron so perhaps it was okay. She didn’t. She had forgotten to bring one in with her, oh I don’t wear those gloves either she said, my hands are too small, it’s okay, I’ll just rinse them and dry them and we’ll get on with the dressing….
You can leave now. I said.
Pardon me? She replied.
I said you can leave now. I repeated very quietly.
The boy looked at my face and he knew that shit was about to get real for the scruffy little nurse with the small hands, dirty uniform and utterly unprofessional attitude towards best patient care.
I’ve only just… I haven’t done… you can’t throw…
You have a dirty uniform, no apron, no gloves, you have placed a sterile dressing pack on top of a tv full of static dust and you picked up the dirty towel out of the hamper to dry your hands on. Get out of my house. NOW or I will bounce you out.
Actually, she ran.
Within the hour, I had been visited by her superior, our GP had telephoned me, and I had been told that I had to calm down and treat visiting medical professionals with respect.
WHEN THEY FUCKING EARN IT!
From that day to this some 19 years and counting, I have been the boy’s district nurse, dressings nurse, continence nurse, and 24 hour carer. The medical professionals are invited to visit the boy and observe when I change a dressing, address an issue, or point out a problem. They tell me how it needs to be dealt with and they provide me with the means to do it. They are not ever allowed to touch him. Never again. Over my dead fucking body.
It works better this way. Less can go wrong and at least we both know I am nothing if not vigilant.
The heel took a total of 42 weeks to heal completely. By this time, the muscles in his legs had atrophied and he could no longer weight bare. He could no longer use his crutches. He became wheelchair bound and had to give up his dream of becoming an actor and dance was impossible. Why did the acting have to go you wonder? Well, this was in the days before disability awareness and disability rights had kicked in. In fact it was virtually nonexistent. Disabled people generally were to be pitied not fucking helped! They can’t really do much though can they? They don’t want to eat out do they? Will they behave properly, it is a restaurant after all, people are paying to eat here, we don’t want our patrons upset… I daren’t even go down the ignorance, inequality and disdain route right now and besides his own father was a proud member of that fucking band of ignorant assholes. I heard all kinds of shite when we were out and about. That story is for another day. Back to the theatre…
The theatre group he had joined used a venue where the stage was inaccessible to wheelchairs. Quite simply put, that fucked it for him now. Whereas before he could bump up a few steps on his backside and throw his crutches up onto the stage, now he was stuck with four wheels to consider. Also in those days, the wheelchairs were big and cumbersome and old fashioned, they were heavy to push around and he was tired by the end of a day. He had no energy to go to a class in the evening and weekends he just watched mindless TV. I struggled to reach him, I tried, I desperately tried but nothing got through. His dreams were dust around his now useless feet and he was in mourning. I had to allow him time to grieve.
A light went out in my boy’s eyes that year. He began his journey from extrovert to introvert, some 19 years later it has now modified and manifested itself as quietly self assured but no longer gregarious by nature. More watchful, less trusting and much more cynical than one so young should ever have need to be.
This telling has laid me low. It is a bitter pill to swallow, and was a heart breaking time when the young boy who had walked with his crutches all of his life, pushed out of the house in a wheelchair for his first day at high school and every day since.
I need to regroup and bury the pain again. It’s old, but damn its still ugly and harsh and very, very real.
All images courtesy of the internet.