So, at the request of a new friend I blogged today about real life. My real life, not my behind the scenes diary which is real but just for me in my 15 hours of free time a week. (It’s loosely referred to as respite.) Those hours never ever impact on the mainstay of my days and nights as a mum first but also a carer for my disabled son. I have tried many, many times to write our story but it is the kind of painful you really cannot stand or endure because of the utter unfairness and frightening reality of it all.
I have been doing this dance for 29 years, hospitals, doctors, specialist nurses, orthopaedic specialists, surgeons, district nurses, social services, special needs, physiotherapists, pharmacists, carer services, you name it I’ve had a run in with them all. They all know me now, none of them would tell you they like me, I’m too abrasive for them you know, they all give me a wide berth whenever they are able. Why?
Because I ask the awkward questions. Because I want the answers they are unwilling or unable to provide. Because I want a health care system that does not systematically fail my son. I want good health care, I want a stable system where we can access the doctor and get an honest response to a terrified question. Even if I have to shout, loudly to get it.
Do you know how many times a night I get up and go and check that my son isn’t fitting in his sleep? 4 times a night. Roughly every two hours. What sleep? What is sleep? I can sleep when I’m dead. He needs me so I am there for him.
His last surgery took 7 1/2 hours. Think about that for a minute. See how long that minute was? Now add 449 more onto the length of that and then put your only child on the operating table for all of that very long time. I walked the whole length and breadth of the hospital for those 7 1/2 hours, I didn’t know what else to do. I talked to no one. I just walked and I worried, and I worried so much I made myself sick. Then I worried some more.
What if he didn’t wake up from this one? How would I survive that knowledge, that I had failed him completely? Should I survive that knowledge?
The thing is, for the past 29 years this boy, this man, has filled my life with colour. Beautiful rainbows of colour that no one can dim. If he wasn’t here, my life would be black and white. I see no point in that.
Regardless, none of this came to pass, he did survive because he had a goal, a reason to wake. I promised him a black labrador puppy, all he had to do to get that puppy was wake up. I had been fed the odds of the opposite happening, but I know my son. His greatest desire in the world was to have a black labrador puppy so he could train it to be his constant companion and assistance dog.
He woke up, we got the black labrador and they are inseparable. In reality, the dog trained himself to recognise when his ‘daddy’ was going into an epileptic event. He would nuzzle his hand and lean into him to support him, he would lick his face and love him throughout the event and it works, it really works, my son reconnects to the world much faster and in a less stressful way than he used to and it is all thanks to Dog.
Job done you might think. Hardly, but it is a step forward for once in this endless dance. I can’t write it you know, I don’t have the words without the anger and frustration, the hurt and the deep well of pain that goes with every single minute of every single day that the health care service fails him yet again.
In my previous blog, I talked about his blood pressure destabilizing because of his kidneys. How did it come about that we found this out? Remember blood pressure is the silent killer. It gives you no symptoms you can go to your doctor with. It gives you no warnings or pains or even a nudge. One minute he was sat in his wheelchair the next minute he has fallen out and banged his head on the floor. Dog barks, I run, we are both too late to catch him this time. I call for the paramedics and put him in the recovery position. I assume this is epileptic in nature but dog is not responding in his usual manner. Nor is my son. He is not fitting, he is not in a seizure, he has blacked out.
The paramedics arrive and they run his obs. Blood pressure, check eyes, how many fingers son? All of the checks and balances are done. I see a concerned look pass between the two paras and I ask what is wrong. They show me the blood pressure results and I am shocked. 190/120. Look it up, he was in severe danger of stroke or worse. They sat and talked to him quietly for 30 minutes and then they took his BP again. 190/110 not good at all. It should have come down after the initial shock had worn off apparently. They put him in the ambulance, we went off to the hospital, dog stayed behind with a friend and was devastated to be separated from ‘daddy’. I was told he howled. Long and hard but to no avail. My son was in the hospital being told he had had an epileptic event that had caused him to fall and bang his head and that was what had caused the high blood pressure. Take this tablet sir, it will help. Go home and rest, you will be right as rain by morning.
They sent him home. I wasn’t happy, they had blamed his epilepsy, both I and dog knew it wasn’t. It had presented too differently to his normal pattern. At least epileptic events are similar in their appearance each time. No one was listening. AGAIN!
I contacted our GP and explained my concerns, that man skyped me, because he couldn’t do a house call today. At least he skyped. He asked me if I had a blood pressure machine that I could take his BP with 3 times a day for a week. I borrowed one, then bought one, and I did as I was asked. His BP was still through the roof and now bouncing around all over the place. He was afraid to get off his bed and into his wheelchair. He was scared to push from his bedroom to the kitchen and he became terrified of moving. I called the doctor and told him our results. He contacted the hospital and booked him in for an overnight observation.
When we got to the hospital, the doctor on duty was shocked my son had been sent home from A&E originally. He should have been admitted a week ago he said. This was not epilepsy, this was not the bang to the head, this was his kidneys. The bloods had come back saying there were problems. They have stabilized his BP with two types of meds, top doses for each one. It appears to be working, for now, but they are still only treating the SYMPTOM they are not looking for a CURE! At least this time it only took a week for them to find the cause and only two different doctors, who still did not speak to each other. Our GP still has not been out to see my son, his health is outside of his GP ability. We have been transferred to direct hospital care. If he is ill, I must contact the hospital, apparently they are better able to diagnose his condition.
I don’t sleep much at all these days. I worry a lot more.
All images are courtesy of the internet