Monday 18th April
Joseph’s signed up for a tennis day from 10am which gives me 5 hours on my own. Of course, I end up doing none of the things I’d planned as I get sidetracked trying to fix the pond pump. This involves hauling the metal grid off, plunging my arm up to my armpit in cold, filthy water, disconnecting and dismantling the pump, jet washing the silt out of the casing and unblocking the pipe. It works brilliantly now and I like a real man. I’ll be grabbing my crotch, swearing and getting a tattoo next. It’s a beautiful day and I fill it doing several other long overdue jobs in the garden before disappearing to the gym for 30 minutes and picking up Joseph. I’m just in time to see him hit a couple of good shots over the net in his last doubles match before being presented with a medal for coming third. After football in the garden, eating and watching Harry Potter and the Deathly Hallows, it’s off to bed. Josh is slowly turning into a modern-day Rip Van Winkle. He slept almost all day again, stirring briefly around 6.15 for a game of Star Wars. They’re talking about trying another lumbar puncture to see what’s going on in his brain. I suspect encephalitis is behind his tiredness, but an LP wouldn’t tell us much unless he’s a battling a new virus up there. His colonoscopy and endoscopy are scheduled for Thursday and there’s an outside chance we’ll learn something new following that...
Tuesday 19th April
There are times, not many but enough, when the strange life I lead pays dividends. Today is one of those days. The glorious weather helps and there isn’t a cloud in the sky when Joseph and I set off for the local newsagents at 8am to get a paper. I’m walking, his Lordship’s on his bike. After that he plays in the summerhouse while I start creosoting the fence – although I’m not using creosote obviously, as it’s been banned since 2003. Just before lunch a neighbour, whose keys we’ve been looking after, pops round with her children and a box of chocolates and offers to take Joseph for a couple of hours. He’s off like a shot and I achieve far more than I’d dared hope. A few minutes after he’s gone, he gets another offer – the chance to see wallabies at a local garden centre with a friend from school. Quite what wallabies are doing in a garden centre alongside lawnmowers, hoses and gnomes is anybody’s guess, but as soon as Joseph returns he’s off out again and I’m off to jet wash the front path. I end up caked in mud and moss and hugely satisfied. After dinner with Joseph on the deck in the sun, we both enjoy a nice hot bath before bed. Meanwhile Josh is still vomiting, but had a more active day. One of his friends came to visit him in the afternoon and they played playstation and various card games for 3 hours. Josh even wore one of his hearing aids for once and it made a real difference. His headaches haven’t gone away and are being put down to encephalitis, but there are no obvious signs of confusion yet, other than calling his wheelchair a pushchair. Oral morphine and IV Paracetamol are keeping the pain under control. Josh’s left eye is clear of haemorrhages but after two negative tests for norovirus, the last one has proved positive. He had immunoglobulin today and he put on a kilo in weight, which isn’t great as his it means his feet have started swelling up again. Long term steroids have really taken their toll and his muscles remain wasted. They are looking to halve his steroids depending on the outcome of his scope and biopsy on Thursday. Tadworth remains a possibility, but quite when he’ll be fit to go is another matter entirely...
Wednesday 20th April
Claire’s not happy. Josh’s scope, which was scheduled for tomorrow, has been cancelled and another child given the slot. If it was an emergency we’d understand, but the doctor is saying they’re concerned about Josh feeling sleepy. This is fair enough if there were medical reasons that put him at risk, but nobody can think of any when quizzed. Claire’s then told it’s because he’s had problems with scopes in the past. This is true, but they’ve been down to inadequate bowel preparation when they’ve failed to listen to our advice, or due to his platelets being low and nobody picking up on it until the last minute. There’s a new doctor on the case and he’s vowed to get to the bottom of it – as it were. It’s a mad rush at home doing all the things I didn’t do yesterday before setting off. We arrive around 1pm. It’s a week day and hard to find a parking space, even on double yellows. Josh is fast asleep and Claire arranges for someone to sit with him while we go out. He then wakes up just as we’re leaving so it’s Plan B and we manage to talk him into coming with us rather than all sit in the room. It’s a gorgeous day and he’s not cold when we’re out this time. The park is full of either tourists or office workers playing truant. We manage to get a table at the cafe and eat together for once, Josh just has his sterile water and is asleep within a few minutes. When we return he’s desperate for bed and has a headache coming on. I give him the oral morphine we took to the park in the same way normal families take drinks and snacks with them. Claire and Joseph head back and Josh wakes an hour later to play Lego Star wars and watch a little TV. His scope is back on tomorrow and bowel prep begins just as he’s going to bed. Having previously not done enough, this time it’s overkill but I just about manage to sneak the huge volume of liquids down his line without him noticing. Nobody’s clear when Josh can have fluids next, although they’re talking about 7.30am which for a 4pm scope is unheard of and probably wrong. I’ve put him in pull-ups and am waiting for him to explode during the night at some point, Tick, tock, tick, tock, boom !
Thursday 21st April
Claire’s other gripe yesterday, and one shared by all the nurses, was the new soap and hand sanitiser dispensers on the ward which are just like the old ones but have a cartoon of a girl on the red one and a boy on the blue. One child is black, the other white. I’d thought one was a patient and the other a doctor, but have been reliably informed that it’s not a banadage on the boys head but a jaunty medical bandana of some sort. Take a look at the pics and make your own mind up. How many hundreds of thousands of pounds will these have cost the NHS ? How many nurses laid off ? Of course it’s a different budget, but somebody somewhere has to allocate it and sign it off. The cause wasn’t helped by the fact that the new ones in our room didn’t work. Last night was no different to any other in the end with Josh up 4-5 times, although I also had to change the sheets twice. A nurse woke me at 2am to give him more pre-meds and he asked what time he could drink up until. I told him midday which is what I’d been told, but it later changes to 9.30am, so I’m happy to see him wake at 9am and drink 240ml of water while he still can. Less happy to see him vomit it all straight back, though. He sleeps most of the morning and a fair bit of the afternoon. I manage 30 minutes in the sun with a sandwich. Someone’s lost or had a baby blanket stolen and has put a sign up offering £50 reward with no questions asked. There’s a photo and I’m tempted to try and find a matching one on ebay for a fiver. Times are tough. Josh wakes up just as I return and is desperate for a drink. I try to keep him occupied for the next 3 hours to keep his mind off it, but it’s not easy as it’s so darned hot. His albumin stool test finally comes back today after 4 weeks and, as we suspected but nobody else did, it’s normal. Forget about the long term repercussions of this, short term it means it’s not leaking through his gut so we really need his scope to be clear. I’m certain it will be and so it proves. Josh didn’t go down until 4.45pm due to various mix-ups which our new doctor did very well to keep under control. At one point it was nearly called off again due to Josh’s rising temperature which I’m convinced was down to us having no air conditioning and offered up my temperature to prove the point. Josh was lovely going under and said he wanted my face to be the last thing he saw. He wasn’t wearing his glasses thankfully. He’s in a happy mood when he wakes up 30 minutes later but desperate for water. We break protocol by heading back to the ward without a porter. At 5.30pm and with a bank holiday looming, it seemed like a good call. Josh sits in his wheelchair and downs 600mls of cold water, vomits then goes to sleep with a really contented look on his face. Just when I’d written him off for the evening he wakes up for to watch Tintin for an hour. They’re such great stories, I can’t wait for the Spielberg movie next year. It’s been a tough day for Josh but the outcome is good. The gastro consultant said his bowel, colon and stomach looked perfectly normal which is a miracle given that his stomach was the most ulcerated they’d ever seen 3 years ago. It does, however, mean that it’s back to the drawing board as far as all his problems are concerned. We’ll need to have a good plan in place after the Bank Holiday...
Friday 22nd April
Kate Moss once famously said ‘Nothing tastes as good as skinny feels’and the quote’s in the news again as it’s being used as a slogan on children’s t-shirts. Irresponsible ? Probably, but I can’t help feeling sorry for Kate as I stuff my face with a delicious Poldana goat’s cheese and caramelised onion pizza sitting in the sun outside Pizza Express. Despite all her millions, she’s obviously eating in all the wrong restaurants. Apparently it’s Good Friday today, I can tell because London’s parks are empty even though it’s 73 degrees and cloudless. Josh is fast asleep and has been since 9.30pm last night, give or take a few toilet breaks and bottles of cold water. It’s so hot that on my way back from lunch, with half my pizza in a doggy box to eat tonight, I even think about asking if I can skinny dip in the GOSH Hydrotherapy pool to cool off. Josh doesn’t wake until 4.30pm. He reads a chapter of a book, has a bath and then starts screaming in pain 5 minutes after sitting back down to play Lego Star Wars. His headache is back and it’s kicking hard. I settle him back in bed less than 90 minutes after he left it with a dose of oral morph. It’s not much of a life for him at the moment. A number of the other children are running up and down the corridor outside. With both norovirus and low lymphocytes Josh wouldn’t be allowed out even if he felt okay, although several doctors and nurses constantly forget this and ask why he doesn’t join them. Do they have amnesia or are they just plain thick ?
Saturday 23rd April
They swap the automatic entrance doors round at GOSH every few days. No idea why, but It’s very confusing as you never know if the one you’re heading for is going to open or not. Today I pick wrongly and narrowly avoid crashing through the glass on my way to pick up a paper. The Sun are giving away a free packet of seeds to every reader and I tear out the voucher and hand it to the nurse who had to ‘grade’ Josh’s number 2’s before his scope. In the instruction manual there were dozens of references to ‘seeds’ in the stools which we never understood. Watermelon ? Pumpkin ? Lightning ? Let’s hope we don’t end up with an enormous pot plant growing out of his commode. Man Utd play Everton today and Josh wakes up just in time to watch his team win 1-0 before a headache starts and he goes back to sleep. I escape for an hour to the park to eat and enjoy the summer sun just as it clouds over and an apocalyptic thunderstorm is unleashed from the heavens. It’s all very dramatic but does nothing to top up my tan. Josh wakes up again around 6pm to watch ‘ So you think you can dance?’ but is asleep again before the dance-offs, so he doesn’t see who wins. Quite why he’s so tired remains a mystery, much like everything else about him and, as we approach our 11th consecutive month of living on the ward, it’s becoming increasingly difficult to be positive. We know our lives will never be the same again, but it would be nice to be in a position to start re-assembling the pieces we have left rather than stuck in limbo...
Sunday 24th April
Whilst the Easter Bunny is unlikely to put in an appearance at GOSH today, Josh’s best friend is hopefully paying us a visit. I tell Josh the good news the moment he wakes up and he’s delighted. However, once he’s had a quick bath and a change of dressing, his head is throbbing and he’s desperate for bed again. He sleeps through Claire and Joseph’s arrival but is sitting up playing Monopoly Deal with Claire and his friend’s family an hour later when Joseph and I return from a football session in the park. Josh is struggling neurologically at the moment and finds himself picking cards up from the wrong pile and becoming confused at times. Whether this is down to tiredness or the return of his encephalitis is difficult to assess, but there’s definitely something brewing. To be fair, he still won the game, despite his handicaps, which is no mean feat as it’s more a game of skill than luck. Joseph and I head home around 4pm, just as he starts to flag again, which gives us time plenty of time in the garden before dinner. Claire has bought a bike and a roof-rack, so she can cycle alongside Joseph on days out. I’m intending to use it too, but there’s a bit too much pink on it for my liking. Joseph keeps reassuring me that it’s purple but I’m not convinced...
