What started as a normal day turned out to be the most awful of our lives. We left for work in the morning waking Howard to tell him not to be late for school. It was the return after half term. He woke sat up and looked at me in a normal teenage fashion, and grunted that he wouldn’t be late. We left for work.
On my way to work I tried to ring Howard just to make sure he was up and getting ready, he did not answer his phone and I assumed he was probably having his shower and left it at that. I stayed late at work that day and Jezz, who has been Howard’s dad from the age of three, got home but did not go immediately upstairs to say hi to Howard as he, assumed as we normally would, that Howard was having a kip after school, which would be a normal pattern of the day. Howard's brother George had been home at lunch time quickly to pick something up and although had heard what he described as “snoring sounds”, which he then assumed was Jezz possibly poorly in bed and home from work he therefore did not investigate. Jezz made some phone calls on his return home after work and even spoke to me on my drive home from Plymouth completely unaware of what was going on upstairs.
As I drove into our road I saw some children dressed in Halloween costumes and smiled to myself as I wondered if they would be coming to our house where I had bought some Halloween trick or treat goodies for such an occasion. I went around the last corner towards the house and to my real horror saw an ambulance parked at the foot of our steps. My heart in my mouth I ran into the house and upstairs to find the most terrifying and unexpected sight a mother could wish to see.
Howard, unbeknown to us at the time, had suffered a massive stroke. He had taken his morning shower and had collapsed in his bedroom before even getting dressed and had laid on the floor the whole day struggling for breathe until we found him some 10 hours later!
In Derreford ICU, Howard was put into an induced coma to rest his traumatised brain. They did not think he would make it, but when he continued to hang in there they told us he was now suffering with complete “Locked in Syndrome” and was unaware of anything around him. They subjected him to painful tests to check his senses, and unbeknown to us all he was aware of the whole hideous ordeal. In his words (spelt using Mega Bee computerised board), “I went to hell on ICU” The awful thing was he just wasn’t able to shout out he was in there. I was in complete despair, but having dropped me back home unable to cope, Jezz drove back to Derreford and spoke using unusually strong language to Howard telling him he was sure he was in there. Howard responded by holding a gaze at Jezz he will never forget.
Jezz came home full of positive words and not believing what the doctors had told us that Howard was in a vegetative state and knew nothing of what was going on around him.
The following day we were walking through the corridor going to HDU and we bumped into one of the Consultants, Dr Edwards, and Jezz stopped him and asked, are you 100% sure or 99% sure that Howard is not aware of anything. He paused for a moment and said, “um, 99%” That was all we needed. We knew Howard was in there, trapped in his paralysed body, unable to speak.
We continued to treat Howard very differently to what we had with our new opinion. Eventually we managed to convince the Doctors that he was indeed, making some positive, if tiny, responses.
Howard had a feed tube up his nose an enormous pipe in through his swollen mouth to enable breathing and oxygen, catheter and constant drugs. It was decided, after he survived a week or so, that they would give me a tracheotomy which would remove the tube from his mouth and an incision would be made in through the front of his throat with a tube inserted to enable him to breathe, as he could not do this even on his own. We were told it was likely he would have this for the rest of his life.
Howard was next moved onto a men’s ward with all the occupants having suffered some kind of brain injury. After various struggles with nursing problems and complaints about care we got to the stage where Howard was ready to move on to a Rehabilitation hospital. This took us the RNHRD in Bath, (MINS hospital).
There were many bumpy things along the way which I will not go in to now.
Howard went into HDU ward. Gradually his breathing started to slightly get better and it was decided to change the trachy tube for a smaller version that could then be blocked off for periods of time to see how he would cope breathing for himself. It was not long before they discovered Howard had coughed the tube out and the hole where it had been placed was already healing over! They decided to leave it and see how he got on with just some oxygen assistance. He did it! Amazing boy that he is, he actually did it, he got rid of that wretched tube and now just has a small scar to show for it. It was not plain sailing though. He got constant chest and urine infections and suffered with Clonus, a shaking of his legs. He encountered pneumonia and a collapsed lung, C Diff which left him in an isolation ward not once but twice, and he still battled on through all of it.
When he moved onto the Young person ward, all other “young persons” had gone! Jezz decorated his corner with fairy lights and posters and made it look more like a teenagers room.
A friend, Adam Dunne came regularly to give Howard massages which he loved and which seemed to stimulate the feeling back in his head and face after weeks and weeks. Howard regained the sense of smell and taste and his hearing in his right ear which he had lost completely. His eyesight is still sort of double vision, but he copes well, watching many dvd’s and television. Still enjoying watching his beloved Arsenal on match of the day.
On Christmas Day evening we took Howard out for the first time in his wheelchair around Bath. He goes out sometimes but finds it hard as people seem to look at him. He has taken to wearing dark sunglasses so that he can look at them too!!!
Howard found movement in his legs and a tiny bit in his fingers. He regained strength in his head and neck and works hard on mouth exercises. He swallows ice chips to dry to encourage the ability to eat, as he now has a feed tube directly into his tummy and also recently had a supra pubic catheter fitted which is much more comfortable for him.
We obtained funding from the PCT for an Igaze computer (£12,000.00!!) which Howard uses by looking at everything on the screen and spelling things on a keyboard, going onto Youtube and Facebooking his friends. He can spell things out on it and have it speak for him. He whistles at the nurses!! His sense of humour is wicked and lovely.
PCT also funded his Megabee board for him to spell out anything he wants to say. He is a whizz on it. Sharp thinking and intelligent he is one inspirational young man. This equipment has enabled Howard to find some independence and a voice. We are so grateful for that.
I travel to Bath every weekend on the train which is very costly and it is hard financially as Jezz gave up work to sit with Howard day after day to support him through this dreadful ordeal. He is a wonderful man. I work full time in Plymouth, there is a lot of travelling and little time for Jezz and I to be together. Our lives have been changed beyond recognition, but we try and do the most sensible things that we can. We moved house as Howard would not have been able to come home to our cottage in West Alvington, and the council helped to find a bungalow in Chillington. I was hoping Howard would be home in June, but last week was told that the hospital were applying for more funding to try and keep Howard with them until August/September time as they feel they can still help him further in his rehabilitation. I miss them. It is hard. But we will be home together again, I know we will. We will make sure!
At the end of the day, what I would say now to anybody who was told that there is no hope, “There is Always Hope”. If you know something in your heart then don’t let anyone tell you otherwise. Howard knew everyone had given up on him, and it was the most terrifying time for that 16 year old boy, who I watched grow into a young man in his hospital bed over the past 6 months.
Howard has hopes and dreams and we are here to enable and assist him in fulfilling those dreams. A simple human right.