The stroke admission ward was full to bursting last night. Two of the healthier guys on Dad's ward were shipped out to other parts of the hospital, with two new guys due to arrive any moment.
Their personal belongings arrived thirty minutes before they did. Although one guy had fought tooth and nail to keep his with him. He failed. Two large bags arrived and were placed on top of the bed directly opposite Dad.
The nurses started to unpack the bags, but rapidly stopped.
The first bag contained a meaty crystal dildo, something wrapped in a blanket and a huge (and I mean monster) flesh dildo.
One nurse began a rapid chant of "Oh, my gosh! Oh, my gosh!", in her thickest African accent. The other nurse stood with her mouth open and seemed to stop breathing for a few seconds.
They threw everything back into the bag and threw that into the bedside locker. Just in time.
The smallest, frailest sparrow of a man was then wheeled in (yes, in a wheelchair) and helped into bed. He looked like a strong gust of wind would break him.
So, we all sat in dead silence. Then my Dad signalled that he wanted to spell a board.
D I L...
My dad is a cunt.
Dad turned sixty five today. His birthday was odd. A nice man called Dennis, who has dementia, came to visit Dad this afternoon. He gifted Dad with a photograph of his dead wife. He'd wrapped the photograph in a clinical remains bag.
Dad has another chest infection. Weaning is also on hold whilst the ENT team decide if a Laryngoscopy will shed some light on why he's finding it so hard to get his voice.
My migraines are coming thick and fast and are leaving me exhausted. I need to sleep for a month.
Last night, after massaging Dad's left hand for over an hour, I asked him to squeeze my fingers. His index and middle finger gave the tiniest of lurches. I asked him to imagine crushing my hand. Once again, his index finger made the faintest twitch.
I have to wait until the canula is out of his right hand, but I fully intend to fix that one too.
Immi (3½): "Do you remember when Grandad was alive and he used to lift me over his head?"
Dad has had another knockback, in the form of a chest infection. He took about a week to shift it, but was then hit by another 'mystery' infection. He was started on intravenous antibiotics first thing this morning, and he's already back on the mend.
Nottinghamshire Social Services have been pestering us to move Dad into a neurorehabilitation unit. They claimed that he'll be fully funded, but then added a sly 'for now' under their breath. It's another external pressure that I could certainly do without. Especially when the Critical Care team are telling us that Dad won't be going anywhere for a good long while.
I also need to broach the whole NHS Continuing Care
option, which has been happily glossed over. It feels as though they want to bully us into signing Dad up for a private care home, and then dump us with the bill after a few months.
The Critical Care Outreach Team have decided that it's time to wean Dad from the ventilator. Today they swapped out his standard tracheostomy with a fenestrated one. The cuff was then deflated, and the end cap was screwed into place. Then, Dad spoke; sort of.
Imagine what it might sound like if a very sleepy dog could talk. If you can hear that in your head, then you've got a pretty good idea what Dad sounded like. It may have been weak, but hearing him rasp out 'Hello, Russell' for the first time in 66 days was still pretty amazing.
When he told Mum 'I love you', there wasn't a dry eye in the house.
He's still only able to manage for a few minutes at a time, but he's very ready and eager to get his voice back.
Whenever I feel a twitch or a twinge from my dad's body as I massage him, manipulate his limbs or stretch his joints, I don't mention it. But I do keep a mental log of it.
If I feel the same movement again, that's when I point it out.
For the past week I've noticed that the toes of his right foot have felt distinctly cooler than those of his left. Accordingly, I've spent about an hour each day working those toes, massaging them, pulling them apart and tracing the tendons from toe to ankle.
Three days ago I mentioned to my dad's physiotherapist that I'd felt a toe twitch. More than once.
Today, Dad demonstrated conscious and consistent control of his second toe, with some minor movement from the third and fourth toes. Although the latter wasn't consistent.
Every recovery story that I've read concerning Locked-In Syndrome speaks of movement starting around day 60. Today is Dad's 61st day.
Dad is back on a ward. Making the adjustment from Critical Care to ward life is really difficult. The noise, the people and the constant feeling of being in someone's way is a stark contrast to the past four weeks of solitary.
The ward he's been moved to seems utterly chaotic, and it perpetually reeks of poop. However, the team there has prior experience with Locked-in Syndrome.
Dad has regained some control over his right eyebrow. He makes me think of a mildly disgruntled owl.
Dad started laughing.
It's not exactly what most people would consider laughter, but watching his face crease up and hearing the faint rasp of air against the tracheostomy is weirdly satisfying.
He was attempting to spell something out to me, and was getting really frustrated. He kept pointing down with his eyes as though it were something in the room, and something painfully obvious. To me, however, it was quite the opposite.
"Look," I said, "I know you're pointing to something, but there's a lot of shit in this room and I'm not Uri Geller!"
He laughed. Mum cried.
At 11.45am dad's room was full of people. The meeting had been arranged for 11am, but life on Critical Care is always a best guess rather than an absolute. Things got underway with talk of physiotherapy for the body and for speech and swallowing. The dietician addressed issues concerning the NG tube
and the PEG
insertion surgery which is scheduled for Monday. The pharmacist spoke about neuropathic drugs, new drug plans and changes to certain medications. Then the consultant spoke very clearly and concisely about the next phase. Or, indeed, the lack thereof. He told dad that in cases like his they expect to see some signs of recovery around the thirty day mark. In his opinion, dad hasn't made any. Essentially, he believes that dad won't get any better than he currently is.
I've managed to pick up a virus
from spending three weeks inside a hospital. This means that I'm not allowed to visit dad until I'm bug free. Naturally, on the only day that I've missed seeing him the physiotherapists go and stand him upright (albeit at 60 degrees and supported by a belt hoist), and he goes and defies all odds and expectations and supports his own weight. His feet were straight and his legs didn't buckle, at all.
When mum called me she was crying. I expected to hear something horrific, but given the noise in the background I soon realised that it was quite the opposite. The entire team are stunned.
Almost as stunned as when dad spelt out 'NO MORE PIPES UP MY ASS'.
Sunday morning we received a phone call from my dad's ward at the hospital. They told us that dad was displaying the symptoms of a lung infection, and that his lung appeared to have partially collapsed. As a result, he was being moved back to Critical Care. Sunday was a difficult day.
Come Monday morning dad was once again stabilized. The Critical Care team told us that the samples taken from his lungs had come back clear of any infection. However, he was still heavily reliant on the ventilator. Until that changes he will remain in Critical Care.
Dad seems a little more upbeat about the whole situation. We've adopted the method of communication seen in The Diving Bell and the Butterfly. His input into the conversation is just as tasteless as ever. We were talking about his sister being a qualified masseuse, and how she'd offered to work on his legs. He immediately made the eye gesture that lets me know that he wants to say something. This is what we got, "Does massage have happy ending?". Naturally, I was all, "Eww, that's your sister!". His response, "I'm on drugs!".
Worst part: having to explain to my mother what a happy ending is.
I got my second trip in an ambulance today. Our local doctor thought that my mum was having a heart attack and thus we spent seven hours in the ER. She's fine though. Just extremely stressed and burnt out.
As for my dad, he's been spelling out words tonight. He spelt out 'kill'. He's also refused his feeding tube.
Not the greatest day.
My dad's central and arterial lines are out. His remaining lines are food, insulin and oxygen. This sudden freedom meant that we could go outside for the first time! It was an ordeal, but with a specially modified chair, a drip stand and an oxygen cylinder we spent a good half-an-hour in one of the hospital's gardens.
It was very cold and the skies were grey, but my dad was happy. Happier still when my niece turned up! It took her a few seconds to adjust to the chair and the tubes, and few more to grasp that eyes up meant yes and eyes down meant no. Thirty seconds in, though, and they were back to the same old banter. Mostly involving poo and who was the smelliest.
My dad had his tracheostomy this afternoon. This morning we were told that it had been cancelled, and that it wouldn't be taking place for at least another day. Fortunately, my dad's nurse kicked up a minor shit-storm. The miscommunication made her seem inept and she wasn't having any of it. Lo and behold, four hours later my dad was out of surgery and resting a whole lot easier.
My dad was transferred to the Critical Care Department at the City Hospital today. It means a long journey each day, but after visiting him this evening I feel so much better. After spending a week in ICU at The Queen's Medical, the silence in the CCD is staggering. He's in a private, air-conditioned room where the heat and lighting is moderated to my dad's exact wishes. Even better, David, the chap looking after my dad tonight is great. It's hard to describe how much of a difference that makes.
My dad's stroke has left him unable to move any part of his body other than his eyes. He is fully aware and fully conscious of everything around him and everything happening to him, but he is unable to respond with anything other than eye blinks. He has all the classic symptoms of Locked-In Syndrome
Over the next few days his care team will remove his breathing tube and, in its place, perform a tracheostomy. Doing so will make him more comfortable and will also allow for further assessment of his condition.
The doctors did their best to prepare us for the future. They spoke of infections, bacteria, clots and potential organ failure. It's a horrible thing to hear, but it's also vital to know. That said, I'm still resolutely living in the 'now'. Those things may happen, but I'm not devoting any of my brain power to them just yet.
Just before we left my dad was trying to communicate with me, but it was impossible to determine his meaning. His eye blinks are often accompanied by eye-lid twitches and spasms, which make his true intent unclear. It's frustrating for me being unable to understand him, and I can't even begin to imagine how it must be for him. Although I suspect he may be thinking "for fuck's sake" quite a lot.
Following the MRI scan this afternoon my Dad's doctor confirmed a stroke. The type wasn't specified, but the epicenter appears to be the brain stem. The severity of the stroke and the effects it has had on his brain won't become apparent until he is brought out of his induced coma. Something which will begin tomorrow morning.
Again, it's a matter of waiting. If he responds well tomorrow then he may be kept conscious, if not he'll be sedated again.
It's true what they say about best-laid plans and their tendency to go awry. This afternoon I was supposed to be going for a walk with my parents. My dad, recently home from Ghana, had been complaining about feeling 'a bit off' and so we settled on watching Antiques Road Trip
Ten minutes in, he complained about pain in his eyes and said he felt nauseated. When he said that his hands were feeling numb we phoned for a paramedic. He began vomiting whilst I was speaking to the emergency operator. The ambulance took twenty minutes to arrive. In that short space of time he lost the ability to walk, to talk and ultimately to support himself.
My dad isn't a slight chap, so moving him to lie flat to aid his respiration was done on pure adrenaline. I also had to aid the paramedics in lifting him onto their trolley. Again, I have no idea how we did it. I can only assume it was one of those moments of hysterical strength.
The hospital don't know what's wrong with him. They've placed him into an induced coma until they can figure it out. The CT scans of his brain don't suggest a stroke or a bleed. His heart is also fine. His white blood cell levels don't indicate that he's fighting an infection. But he remains unable to breathe without support and unable to speak; although he did squeeze my hand when I spoke to him.
They suspect it may be malaria related, or possibly meningitis. He is scheduled for a lumber puncture, and resulting fluid tests will occur overnight. He also had gallons of blood drawn for tests. But, essentially, it's a mystery.
When I was growing up, video games were the next big thing. When I was six, my brother received an Acorn Electron from Father Christmas, and the world of gaming opened up to me. I fondly remember the endless hours I spent playing Citadel
and Sphinx Adventure
. Playing them rather poorly, but being utterly fascinated all the same.
The Acorn Electron also saw the creation of my very first piece of digital art. I recall that it took me the better part of a day to complete. All drawn using the keyboard, because at that point in time the computer mouse was a luxury few could afford.
The software that I was using lacked a viable save function, so my 'proud dad' ended up taking a photograph of the fruits of my labours. A photo he still has on display in his office.
When I hit nine, I progressed to the ZX Spectrum and entered the murky world of 10 PRINT "Hello World
and writing random bits of code which I would then mail on cassette tapes to my friends. This carried on into my Commodore Amiga days. I would spend hours drawing bizarre images in DeluxePaint
, burn them to a disc and throw them in the post. When DeluxePaint III
emerged, my images came to life with the glory of frame by frame animation. Sadly, even though I have them saved to floppy, I don't have a working drive to access them, so you'll have to take my word that they were freaking awesome! If a little odd.
Time passed by, and whilst my friends were all busy playing Wonderboy in Monsterland
, I was whiling away my hours romping through endless dungeons and slaughtering countless pixelated villains. It all started with Dungeon Master
, then spiralled out of control with Chaos Strikes Back
and plunged to the endless pits of a permanently blacked out room with the Eye of the Beholder
series. So began my days of mouse and keyboard gaming.
Once again, I found myself at odds with the console craze. As I entered the early 90s my friends were all raving about Wipeout
on the PlayStation. I, however, was still trying to avoid a multitude of grisly deaths in Elvira
, The Jaws of Cerberus
. Ah, Waxworks. Dark Souls
seems like a walk in the park in comparison.
It was around the mid-to-late 90s that I first discovered HTML. I was staying with my friend John
whilst I was being interviewed for a place at Reading University
. One sunny morning he abandoned me in a computer lab while he attended lectures. That's where I found the cursed tome: HTML coding for beginners. That pivotal moment in history saw the eventual birth of Unfathomable Foulness
! It was also the point at which gaming took a back seat, and digital art came back into my life.
Three universities and a lot of learning later, I somehow stumbled into being a digital artist. A digital artist employed in the gaming industry. I suppose it's not really all that shocking, given my murky past. But to the child who grew up on the chunky pixels of 8-bit gaming, it still amazes me. It's also afforded me a wonderful excuse to dive back into gaming. Hell, over the past two or three years I've gorged myself on video games. I also fell in love with the PlayStation 4
. But that is a story for another time.