Monday 4th April
Knowing I have another day at home tomorrow makes today a little less frantic. After walking Joseph to school it’s off to Bluewater to pick up a new DVD recorder to replace the one they couldn’t fix, then back home to cut the front and back lawn. When I ring Claire she’s rushing back from lunch to the hospital for Josh’s Ultrasound. His kidneys, chest and abdomen all seem to be okay, although his weight’s up again and the excess fluid he’s carrying just isn’t shifting. He still needs his power naps during the day, but is otherwise stable.
Tuesday 5th April
Another late night working leaves me feeling hyperactive and I end up lying in bed at 2am trying to think of things to do. I somehow end up on my hands and knees trying to tease Claire’s engagement ring out from under the sink where she lost it last week. I manage in the end, using a feather duster handle and Joseph’s Power Ranger helmet with a torch on top. Joseph sleeps through the racket, but I’m not sure how. The morning’s far more peaceful and after a leisurely stroll round Bromley, I manage to sit down and read the paper. Am I the only person in the country that didn’t know school children take their mobiles into classes and text during lessons ? No wonder we’re ranked lower than Albania and Tonga for literacy. Claire calls to tell me Josh has caught norovirus again. Not great news. To make matters worse, Josh’s lipase and amylase levels are creeping up again which suggests his pancreatitis could be coming back too. In direct contrast to all that doom and gloom, Joseph bounds out of school. I’ve got him his own set of darts with shark and spider flights and we play in the cellar until it’s time for Taekwondo which, according to my spellcheck, should be spelt ‘Teakwood’. Modern technology – don’t you just love it ?
Wednesday 6th April
Summer has arrived with a cloudless sky and temperatures in the mid 70’s – or should that be 21 degrees these days ? I did a dark wash yesterday and have only worn light- coloured clothes since, so there’s only whites to wash when Claire comes home. It’s a sad little ritual I’ve developed over the last few years. With most of the ironing done too, I start packing for a trip up North to see my folks. We’re not going until Sunday but I’m at GOSH until then and it makes more sense to drive straight up from there. Claire calls to confirm that has pancreatitis and was up all night screaming until the pain relief team set him up with Fentanyl and his beloved green button. He had a bath early this morning to help ease the pain and is awake and alert when I arrive. He struggles through the day, pushing his button when things start getting uncomfortable. He rallies briefly and spends 20 minutes in his wheelchair but it soon proves too much for him. The fluid debate rages on. One minute he’s negative, the next positive. He has a bag on his gastric peg to stop the water going beyond his stomach, but it doesn’t always fill up which is bizarre, so I have to aspirate him. At one point he’s on fluids and diarretic at the same time which doesn’t appear to make any sense. He wakes up for the Man Utd v Chelsea game and we rearrange the room so he can watch from a comfy chair rather than his bed. Utd win thanks to a Wayne Rooney goal. He doesn’t swear when he scores, but Josh and I are so elated that we nearly do.
Thursday 7th April
Josh slept but I can’t say I did. He was up every hour weeing and once to vomit. Pain relief means he drifts straight back to sleep, whereas I just lie awake trying to work while waiting for him to call out again. It’s another beautiful day and the weathermen have predicted a BBQ weekend – so keep your brolly handy. An ex-work colleague pops by to download some old ads for a potential job. It’s great to see her but I can only spare a few minutes unfortunately. It’s all a bit mad today. News from the BMT doctor is that a recent GFR kidney test shows Josh’s filtration is abnormally slow which suggests a severe renal problem. At my request, she speaks with the renal team to find out what that means, but they won’t tell her anything over the phone and want to speak with me in person. It doesn’t sound good. Our room is so hot that even though Josh sleeps for most of the day, it’s impossible to work or concentrate. One of the nurses organises cover for a couple of hours but there’s a hiccup and all the timings suddenly change. I’m under enough pressure as it is, and my temper becomes frayed. We’ve been here for 3 years and rarely ask for help, when we do we always seem to be at the bottom of the pecking order for play specialists and volunteers. Without wanting to stamp my feet like a spoilt brat, it’s not fair and I make a point of telling those involved. Opthalmology ask me to put Josh’s eye drops in as they’ll be up at 2pm, but it’s gone 5pm before they examine him which completely buggers all my work plans. Thankfully I used the long-acting drops rather than the short ones. There’s a new haemorrhage in his good eye, but given his high blood pressure and vomiting it’s nothing to worry about. I manage to get out for a quick breath of fresh air thanks to some sterling work from the nurses, but as soon as I start pulling a presentation together Josh wakes up and everything goes on hold. Josh is even more of a puzzle than usual today. His sodium high was high last night, but it’s okay today after fluids. His potassium has suddenly shot up without any explanation and the gastro team are baffled as it should be coming down and makes no medical sense. The only plus was a late cameo appearance from the renal team who asked half a dozen highly intelligent questions before concluding that his kidneys are absolutely fine and everyone’s been getting in a tizzy over a contaminated result. Hallelujah ! Josh is asleep by 9.30pm and I start work again, but it’s so hot and clammy that I can’t see myself staying awake for long...
Friday 8th April
The nurses cover for me as I have an early morning meeting, but unfortunately I can’t take the job as Josh is far too high maintenance at the moment. As it turns out the pitch is called off a few hours later anyway. Josh sleeps most of the morning, thank goodness. Just attaching a bag to his peg and draining it every time he wants a drink becomes exhausting after the hundred and umpteenth time. He’s so deaf at the moment that even shouting doesn’t get through. Hopefully his hearing will improve once he’s off the Fentanyl. Ward round is a non-event. There are no answers or even wild guesses as to what’s going on with Josh at the moment. His face and feet remain very swollen despite his albumin levels rising which makes no sense. His platelets have shot up which they’re very excited by as they see it as evidence that his top up has worked. I’m slightly more sceptical as they still can’t explain why the levels shot up a couple of weeks ago, long before his top-up would have kicked in. In total contrast to the last few days, I manage to get out for a couple of hours in the afternoon which is an absolute dream given the weather and I head for the nearest park after a quick pizza. Josh doesn’t wake until I’m back but is soon up and back in his chair until well into the evening. His pancreatitis is settling and he was even singing again at one point today. He hardly touched his pain relief button, so he can hopefully come off that tomorrow. We sit down to watch Megamind together in the evening, but pre-recorded DVDs are so quiet in the new player that both of us are struggling to hear. Unplugging my headphones makes it slightly louder for him, so I leave him to view it on his own. It looked good, so I’ll have to make sure I watch it with Joseph.
Saturday 9th April
Today brings a far more relaxed 24 hours than Jack Bauer ever has. Josh is awake for much of it, but the nurses are having a rare quiet day and I’m able to have a couple of hours to myself again in the afternoon. Josh weight is still ballooning with no sign of his fluid shifting and no explanation in sight. He’s not in pain any more though and his Fentanyl stops when he comes off TPN early in the afternoon. We even talk to one of the new doctors about eating and Josh has a couple of slices of toast during the day. After a much needed bath, I apply his steroid cream and slap a little olive oil on his face to make him presentable. While he watches ‘So you think you can dance’, I sort out various files on my laptop and come across a whole host of photos of Josh taken just a couple of years ago. He’s almost unrecognisable, which makes the pictures both heart warming and heart breaking at the same time.
Sunday 10th April
Joseph and Claire arrive around 1pm by which time I’ve learnt that the doctor on duty this weekend is also called Claire. This explains a number of bizarre conversations I had with the nurses yesterday. We venture out into the sun as a family and have lunch in the park at Russell Square. It’s another hot day and we’re all in t-shirts, but Josh is feeling a chill despite wearing a jumper and a fleece. Even the two blankets I run back and grab from his room don’t make much difference. We don’t stay out long and by the time we’re back on the ward Josh has a blinding headache and is desperate for bed. Joseph and I set off for Southport. Getting out of London is always slow, but driving through Camden on market day and past Hampstead Heath on a sunny one at least keeps it interesting. Once we hit the M1 the traffic’s running freely and it’s the same on the M6. Joseph needs 3 toilet breaks on the way up, so we get to compare motorway service stations. Newport Pagnall gets my vote. We’re staying at my sister’s house but she’s still travelling back from Norfolk when we arrive, so we drive straight to my mum and dad’s instead. This isn’t the place to talk about them or how they’re coping, but it’s fantastic to see them both as it’s been nearly 2 years. Joseph is obsessed with their cat, Pepsi, and follows her round the room. Once my sister’s home, we drive over and are both asleep the moment our heads hit big, floppy comfortable pillows.
Monday 11th April
We’re off to Knowsley Safari Park today and it starts raining just as we arrive. I used to work here around 35 years ago and it’s hasn’t changed much. The rain means the lions are up and wandering around rather than lazing in the sun and we’re both excited when they walk up to the car and peer in. The baboons are somewhat less keen on the British weather and sit shivering under the trees looking cold, wet and miserable. After the safari drive we have lunch and watch the sea lion show by which time it’s brightened up. Driving round again, we’re rewarded with around 20 baboons leaping on our car, hanging off the wing mirrors and chasing each other over the roof. It’s exactly what we’d hoped for, even though they leave the car covered in muddy paw prints and broccoli smears. It’s round to my parents next for an afternoon of old photos and reminiscing before returning to my sister’s for a home-cooked chilli. It’s impossible to get a mobile signal up here, so Claire and I struggle to catch up properly. Josh has been sleepy all day and is still having terrible headaches. Oral morphine is the only thing that seems to work. There’s no sign of the swelling going down in his face, fingers or feet. We’re only a couple of hundred miles apart, but it feels like a world away at the moment.
Tuesday 12th April
I’m 52 today which sounds ancient and it is. The day starts with scrambled eggs and smoked salmon and gets even better despite the odd hiccup. After seeing my younger brother’s new pad, we head to Albert Dock in Liverpool to visit Bug World. Unfortunately it shut down 4 months ago, even though the signs are still up and the leaflets still on display everywhere. Obviously folk round here prefer The Beatles to Beetles. Joseph hides his disappointment well and we have a fantastic day out at the World Museum instead. It houses everything from a decent sized aquarium and a bug exhibition to dinosaurs and a planetarium. A birthday cake arrives back at my mum and dad’s house, after which my sister treats me to a five star meal at a country bistro overlooking a canal as the sun sets. I’ve been spoilt rotten today, but it’s hard not to keep thinking about Josh, whose headaches continue to give him grief. He woke up long enough to watch Harry Potter and the Deathly Hallows on DVD, but is really struggling on so many levels at the moment. Where’s Dumbledore when you need a bit of magic ?
Wednesday 13th April
A big thank you for all your birthday wishes. And an extra big one to Melanie who made us all laugh out loud with this extraordinary Canning family dance video which can hopefully still be viewed at: http://sendables.jibjab.com/view/OhPW1L7tuS2Ldrrv4jMJ. Today is a relatively quiet one with no baboons, bugs or breakdancing. I was tempted to return to the safari park to ask the monkeys to scrub our car clean, but settle for a regular car wash at Tesco instead. After that Joseph and I hop into Southport to see ‘Hop’ – a bizarre animated movie about the Easter Bunny which just about keeps Joseph amused. After a quick walk on a beach that goes on forever but never seems to reach the sea, we’re back at my parent’s house for the afternoon. In the evening it’s another lovely meal and a special guest appearance from my brother. With Joseph asleep I trawl the internet for ideas of where to stop on our way back to London. Cadbury world only has a 2.10pm slot and all the theme parks are too big a weather risk, so I’ll have to think on. Claire’s been working her way through Mad Men season 4 as Josh has slept most of the day. He lost a fair bit of weight today and his feet are looking less elephant-like, which is good news. He needed another albumin infusion today which isn’t. There’s some confusion over his pancreatitis as well. Whereas we’d previously been told his rapidly see-sawing enzyme levels were typical of gall stones, they’re now saying it’s something they’ve never really seen before and can’t explain it. Now there’s a surprise...
Thursday 14th April
It’s been an emotional few days and I leave Liverpool full of love and admiration for my parents. My father never ceases to be an inspiration to me, even at 91. I hope my sister doesn’t mind me saying this, but what she does for them both is truly amazing and I honestly don’t know how she copes. Travelling back in the car, Joseph and I listen to the free safari park cd that came with our ticket. About 15 minutes in, the narrator recounts a story about a screaming woman who came running out of the ladies toilets after an escaped lion cub walked under the door into her cubicle. I remember it well as I was on car park duty and was first on the scene. She was shimmying towards me at breakneck speed with her tights down around her ankles and could hardly speak. He claims he was there first and that 3 lion cubs were involved. Hmmm...maybe my memory’s playing tricks on me now I’m getting old. Joseph and I pull up outside Waterworld, just off the M6 near Stoke, around 10.15am. The boy who knows no fear isn’t terribly keen on the waterslides or flumes, but we have great fun in the main pool with the wave machine. After a couple of hours we’re pretty wrinkly and have lunch there before heading off. Joseph’s exhausted and sleeps for the next 120 miles or so. We roll up at the hospital around 4.30pm and while Joseph and Josh catch up on the week’s events, Claire and I do the same. We’re interrupted by the gastro doctors who have the topline results of his MRCP scan which was suddenly brought forward and happened this morning. First indications are that everything’s fine and there’s no evidence to support the theory that he has either a gallbladder or gallstone problem. The mystery continues. After Claire and Joseph head off home, Josh remains lively and we stay up until 9.30pm watching Tintin together. It’s only been 4 days, but I’ve missed him so much.
Friday 15th April
Ward round takes place just after Josh slots home his second goal against me in FIFA. His stay here at GOSH has definitely been a game of two halves with the first 12 months spent in gastro and BMT being more far more rewarding than this last 10 month stint. Every riddle remains unanswered and whilst UCLH will now be asked to help unravel the mystery behind his pancreatitis, we’ll have to wait another week before he’s scoped and we can get to the bottom of what, if anything, is going on in his gut. A new teacher arrives an hour than advertised and starts doing a football project with him. He complained of a slight headache earlier and is on IV Paracetamol when I leave. When I return an hour later, having had lunch and cooked him the pizza he begged me for, Josh is asleep in bed. The nurse tells me he started screaming in pain as his headache deteriorated and it was only after a hefty dose of oral morphine that he calmed down. That’s how quickly things can change here at Hotel Hospital. I sit with him for an hour, then make a sharp exit when the play specialist arrives. It’s a warm afternoon and I stroll over to the British Museum. There’s an exhibition on called 7,000 years of Jade. Is it really that long since she showed her kebab on Big Brother ? Josh looks much happier when he wakes up and is pain free. Just as we’re settling down to watch TV after a hot bath, a radiologist waltzes in to perform a heart scan – not great timing as Josh always ends up covered in gel. Nobody told us it was happening and there’s no logical reason to do it now he’s lost weight, so I track down the doctor who authorised it and we agree to call it off. This not only makes Josh happy, but means the radiologist can go home early to. Joseph had a 5 hour football marathon today at Charlton and has a tennis course on Monday. He’s talking about trying his hand at fencing next. Be afraid. Be very afraid...
Saturday 16th April
It’s Man Utd vs Man City today but I’m not sure if Josh even knows. We had a reasonable night with him up only 3 or 4 times after I’d gone to bed. He sleeps until 11am before getting up and sitting in his wheelchair, but after 30 minutes he’s tired again and back in bed. It’s a long, lonely day with nobody around to give me a break, although I do slip downstairs long enough to buy a paper. Josh doesn’t open his eyes again until mid-afternoon, but after an hour he complains of a slight headache which suddenly escalates into something far worse before his Paracetamol arrives. He’s screaming in pain again and we opt to go straight for the oral morph which settles him down, along with a little head stroking. I have a long chat with the doctor on duty, not just about Josh’s headaches but everything else. She leaves us next week, no wiser about any of his problems than she was 3 months ago when she first met him. Josh wakes briefly a couple of hours later and is still in pain. I ask for a blood gas to be done, just in case we’re missing something obvious, but it comes back fine. I start watching the FA cup match without Josh, which is just as well given the result. He finally wakes at 10.30pm and we watch the day’s Premier league action, but just as he settles back down to sleep a huge vomit arrives unannounced, drenching both him and his sheets. By the time I’ve sorted everything out, he’s really tired again and goes straight back to sleep. Claire and Joseph spent the day at Bewl Water in Kent; junior fishing, cycling through the woods and soaking up a few rays of sunshine on the man-made stretch of beach beside the lake. They loved it there and Claire reckons it could become one of her favourite places. Hopefully the next time she visits it’ll be with me and Josh, and not as a single mum again.
Sunday 17th April
It’s the London Marathon today, so Claire’s leaves the car at home. That doesn’t mean she’s jogs here instead, just takes the train to avoid the traffic chaos. By the time she and Joseph arrive, Josh has woken briefly only to vomit and go straight back to sleep. It’s not until Joseph and I pack up to come home that he wakes again. The boys manage an hour together then, just as we’re preparing to venture out into the sunshine, Josh suddenly tires and his headache returns. He’s asleep within seconds and Joseph and I catch the 4.46pm train home. The sun’s still shining and there’s enough time for a nice long football session in the garden before bed. It’s been 12 days since I’ve been home and I can see myself falling asleep in front of the telly tonight with a nice long glass of something alcoholic in my hand...
