Sunday 29th May
At the end of a day that’s seen more twists and turns than Space Mountain, I’m left feeling both exhilarated and nauseous. It all started peacefully enough at home, with me doing a spot of ironing and transferring the week’s programmes onto DVD for Josh. Joseph and I didn’t set off for GOSH until after midday as Claire felt Josh was unlikely to wake up when we arrived – and so it proved. He’s hardly stirred since 4pm yesterday, but is still hallucinating when he’s awake. Yesterday he told the nurses he was very worried about me as I kept falling over in his room, even though I wasn’t there. Hopefully they know that and don’t think I’m the town drunk. Joseph is disappointed he can’t rouse his brother but deals with it well. He and Claire head back home early as there’s little point in hanging around. Josh wakes around 5pm and is surprisingly bright and coherent. He asks what day it is and when I tell him, he immediately knows he missed the Champions League Final, which is a good sign. I tell I’ve put it on DVD, but he wants to know who won first. He watches Power Rangers and vomits his water up. He has a hint of a headache but oral morph seems to sort that out. An hour later he wants to be in his wheelchair and I take the opportunity to put new pyjamas on him as they haven’t been changed since Friday. He’s not keen but as soon as I’ve swapped the bottoms he starts screaming and screaming. He can’t tell me what’s wrong and is seemingly oblivious to me asking. His legs go weak and I manage to get him back onto the bed where he hugs me as he screams. When he’s coherent again, he tells me that it’s his head and we get him IV Paracetamol. He’s soiled his pants which suggests to me something else may have happened rather than just blinding pain. I change him again and sit him up in his wheelchair while I change his sheets. He settles down in a fresh bed and is soon asleep again. I drift in and out of sleep reading to myself by his bed and then get ready to turn in around 10pm which is when he suddenly wakes up again. He’s completely coherent now and shown no sign of hallucinations today. We play Yahtzee on the iPad, which is a brilliant version of a game we both love and he’s suddenly on top form again neurologically. He knows exactly what sequences to go for and manages to tick off what he achieves without any hesitation. We play for a couple of hours and it’s an absolute joy to see him this way again. It’s well past midnight before we stop and he reluctantly settles back down again. What on earth is going on ?
Monday 30th May
Josh is up at 9am and we’re playing Yahtzee again as soon as he’s drunk some ice cold water. He’s been on Elemental feed through his tube now for several days with no obvious signs of any more vomiting than usual. He’s not quite as sharp neurologically as he was last night, but he’s still pretty good and stays awake for an hour. I update Claire and she reminds me it’s school holidays and a Bank Holiday, so there’s unlikely to be much cover at the hospital if I want to go out. I’d promised Josh I would try and track down Lego Pirates of the Caribbean on PS3 today and a nurse sits in with him for an hour which is long enough for me to run down to Oxford St to buy it. On the way back I stop at China Express to eat half a red Thai curry, Malaysian chicken and rice and bring the rest back in a box for supper. I grab a Mars Ice cream at the newsagent for pudding. It’s not exactly the F-Plan diet, unless F stands for Fat, but it makes me happy. Josh is awake when I walk into the room and waiting for me. He has a headache looming even before we start to play but the oral morph holds it back long enough for us to complete a couple of levels before it gets too much for him. We’d planned a bath and a dressing change, but have to make do with me giving him a thorough bed bath, patching his dressing and creaming his skin up as he’s going flaky again. He sleeps for around 3 hours and I start reading one of the 2,500 free books I’ve just downloaded onto the iPad. Claire was looking at operations on YouTube over the weekend – as you do – and watched someone having their gall bladder removed. Personally, I prefer film trailers, but take a quick look anyway and it looks relatively simple. Far more scary are the comments from people who have had Pancreatitis talking about the unimaginable pain they’ve been through. Josh never complains, but he asked me today when it was all going to stop and his headaches would go. I hate not having an answer but tell him that Italy could hold the key. Early evening sees us boarding the Black Pearl again for another pirate adventure and playing Yaztzee. There are no headaches on the menu this time, just 2 hours of fun and games and a large helping of joy.
Tuesday 31st May
On Saturday, Claire wrote an excellent email to the Chief Executive of the company behind the in-house entertainment system on Fox ward that never works. As you can imagine, she didn’t mince her words. They replied by email yesterday acknowledging that the situation was inexcusable and today a representative from Great Ormond Street wants to see me to discuss what’s being done. I’m not really interested in how or why the system keeps failing and have to stop the guy from going into great detail about encoders, cables and servers. The fact is it’s nearly 16 months since the TVs were installed and they’ve been a problem since day one. If the system goes down at the weekend or over a Bank Holiday, which it invariably does, nothing can be done for 2-4 days and patients are left staring at a blank screen. At the end of a long conversation that goes nowhere, he assures me they’re doing everything they can to make sure the system breaks down less often. It’s an honest answer, but it doesn’t exactly fill me with hope. Once he’s disappeared back into his Sky box, or wherever he normally hangs out, I take advantage of a volunteer who asks if I want a break and grab breakfast at a nearby cafe. Josh is up and awake when I return and Claire arrives soon after. We start playing Yahtzee, but before we’ve even finished the first game, Josh starts screaming in pain and we have to get him back into bed. Ward round takes place in the corridor and we update the team on what’s been happening over the long weekend. They’re a little shocked by recent developments, but believe the JC virus in his brain is responsible. When Claire asks for more information about the boy treated for JC in Milan, we’re told he had a bone marrow transplant when he was Josh’s age and his immune system never really built up again due to chronic GVHD. At the age of 18, encephalitis took hold and he ended up in a coma. The lymphocyte infusion worked almost immediately and he made such a startling recovery that he was driving a car soon afterwards. I ask if Josh will be able to drive when he returns from Italy and if so, will it only be on the right hand side of the road ? It raises a smile and hearing about the case raises our hopes. There are so many things wrong with Josh at the moment though that, even if it does work, it’s only the first step on a long, long road to recovery. Joseph’s at a friend’s house today and I pick him up around 6pm, although we end up staying until 8.30pm when I have to rush back to take a brief. During that time I’m spoilt with a roast chicken dinner, chocolate cake, strawberries and a bottle of Peroni – even though I have a Chinese take-away waiting for me in the car. It’s been a long time since I sat and chatted with friends rather than doctors and nurses and it’s a welcome change. For a couple of hours I almost felt human again...
Wednesday 1st June
Joseph and I stay at home all day as it’s hot and sunny and I hardly spend any time here. We play football, inflate and fill-up the paddling pool and open a late birthday present which is a water slide from ELC and great fun. We pitch a tent up in the garden and eat yesterday’s Chinese take away in there for lunch before rounding the afternoon off with a Nerf gunfight and a water pistol shootout. He’s asleep by 7.30pm which is just as well as I’ve got someone coming to the house to brief me on a work project at 8pm and I’ve still got paddling pools and a whole artillery of weapons to put away before then. Josh would appear to have had an okay day at GOSH, although the longest he stayed awake was 90 minutes. Claire had to wake him around midday to put his eye drops in for the ophthalmologist. When she examined him, she appeared to find something near his optic nerve that could have caused his hallucinations. Claire can’t elaborate any more than that as the ophthalmologist tends to talk in riddles and half-finished sentences, but it sounded like there were signs of pressure that could explain the pain Josh sent through with me and his hallucinations two days before. There’s nothing to worry about now, apparently, but we’ll have to get the BMT team to chase it up and get a proper explanation of what she found, as it could be very important.
Thursday 2nd June
It was gone 4am when I rolled into bed and Joseph’s up at 6.30am which isn’t ideal. Once I’ve sent off the work I did last night, done the ironing and fixed the pond pump, we leave for GOSH. I’m in desperate need of a haircut and tell Joseph I’ll probably find one near the hospital this week. He tells me not to go to a barber I don’t know unless I see someone walk out with a good haircut first – which is sound advice from a 6 year old. Josh is asleep and a volunteer’s lined up so we sit down outside a restaurant in the Brunswick centre with Claire and eat. Josh wakes long enough to play his new Lego game with Joseph, but fades fast soon after he leaves, giving me a chance to work. He wakes around 6pm to watch The Apprentice and starts having cravings. First it’s cheese, then meatballs – both of which we have in the fridge. He eats miniscule amounts of each before asking for a crusty roll. We don’t have one of those so I set off in search of bread, just as Lord Sugar pops up in the boardroom. The People’s Supermarket has nothing, so it’s a trudge to Waitrose at a time when everyone’s coming back from work and buying supper. They’re out of crusty rolls but I mange to grab the last crusty loaf and hope he’ll be happy with that. By the time I get back, Lord Sugar has pointed his firing finger at some poor unfortunate wannabe and Josh has developed a headache. He had morphine earlier, so has to settle for Paracetamol and me stroking his head until he’s asleep. I start work only for him to wake up wanting his bread a couple of hours later. It’s still in the room so it’s in front of him within 30 seconds, but by then he’s produced a huge vomit that we just about catch in a bowl. The tomatoes and meatballs he had earlier make it look like he’s vomited blood, and I have to stop the nurse sending a sample off for analysis to find out if they’re cherry, plum or beef. It’s another long night as I’m tired but still have a fair bit to do. Josh wakes at midnight and asks for bread yet again. He actually manages a mouthful this time, although he does spit it out a few minutes later. After that he settles down for the rest of the night and I start to make good progress...
Friday 3rd June
I’m up at 6am. So’s Josh, but only for a dressing change. It doesn’t need changing just yet and I manage to talk him out of it. He goes back to sleep as I attempt to get a good enough internet signal to send my work off. I end up putting Josh’s intercom on, then balancing precariously on a window ledge in the corridor. Cirque Du Soleil, eat your heart out. When I ask the doctors about Josh’s eye during ward round, they explain that it was hardly anything to speak of, but the ophthalmologist knows Josh so well that when she noticed a change, she felt it best to flag it up. Josh’s skin is looking good, although his renal figures are creeping up, which could be down to higher levels of steroids in his blood due to his cream. Josh’s donor is due to give blood on the 16th June, but in the meantime we still don’t know if Josh’s blood will respond to the cell manipulation as the sample they took last week took 3 days to reach Milan rather than 24 hours. They should have sold it to the Italians via eBay, as everything we purchase arrives the next day. Although It would have been a little worrying if someone else bid and it ended up going to some obscure Transalvanian vampire cult. An hour later, a surgeon appears to talk about Josh’s proposed gall bladder operation. It’s something Claire requested and, as the conversation shifts from the procedure itself to whether they should actually do it or not, things become rather interesting. Whilst he’s yet to view all Josh’s scans ss, he believes that the sludge and possible micro-stones spotted at UCLH wouldn’t cause pancreatitis, so there’s no evidence that removing his gall bladder will make any difference. He believes Josh’s pancreatitis isn’t that severe, in that they’re always quick episodes that last for days rather than weeks. He’s not really seen a case like this before, which is what gastro and BMT said last year but appear to have conveniently forgotten since. If it’s still a mystery, should we actually be removing his gall bladder ? These are all things that he and the chief surgeon will think about next week and then discuss with us and the BMT team. We only really agreed to the operation as we didn’t want to endanger Josh’s Italian trip, but they may not be able to operate before then anyway, in which case it we’d definitely call it off. Josh sleeps most of the day, only waking at 4pm for physio, who whisk him off in his wheelchair to walk down one of the hospital’s many long, empty corridors. He manages over 20 metres but returns with a headache. Oral morph does the trick and he stays up until after 10pm playing games, reading and another episode of The Apprentice with me. Josh’s personality still comes shining through in much of what he says and does, but overall he sadly remains Josh Lite – a Diet Coke version of his former self. Given where we where last July when he slipped into a coma we’re is such a good place, but confusion still reigns and it’s so hard to see him struggling with so many relatively simple acts – from holding his cup to following instructions. We just have to stay strong and hope that the Vatican don’t have exclusive rights to Italian miracles...
Saturday 4th June
If you’ve never been to Great Ormond Street, and let’s hope you never have to, you won’t have seen the lifts. The walls are adorned with poems by the children there, printed on large decals and illustrated by a cartoonist. It’s a lovely touch, but you have to question their choice of subject matter. One in particular leaps out by Ali and McShaun as it includes the lines ‘ Working on my six pack, not giving any slack / If you try to mess with me, I’ll put you in a sack.’ I can only imagine it’s been chosen to show how modern, hip and progressive the hospital is, but it just demonstrates a real lack of judgement by people who should know better than to embrace yob culture. The day ticks slowly by with Josh asleep for most of it again. At 11am. Safe in the knowledge that he’s just used the commode and crawled back into bed, I put the intercom on and slip out to grab a bite to eat and buy a paper. Story of the day is the 3 million people claiming disability allowance in the UK at a cost of £12 billion a year. Alcohol, drug abuse and hayfever are amongst the reasons given for being signed off from work for decades. Meanwhile, Josh’s carers and disability allowance stopped 9 months ago because he’s in hospital and we are ‘no longer caring for him for the required 36 hours a week’. Ironically, I’m away from him for less than 36 minutes and in that time Josh’s been to the toilet twice and produced a huge vomit. There’s a nurse with him when I return but he’d rather people keep away when he vomits, so he’s not happy. He doesn’t even let Claire and I console him, just hold the bowl. The nurse changes his bedpan but doesn’t put the new one in properly, so the next time Josh uses it everything ends up on the floor. It’s a design fault rather than hers, but one we know about and yet another reason why we need to be here 24 hours a day. Josh sleeps until 3.30pm and shows the first signs of a headache within an hour of waking up, but it goes away leaving him free to enjoy the rest of the day. We sit down to watch a movie at 7pm and he goes to sleep straight after that, only to sit up as I climb into bed and ask to do something as he’s not tired. We play Yahtzee at 10.30pm and then again at midnight when he wakes again. He’s scratching his arms more than usual and a closer inspection shows a bad rash that looks a little different to his normal GVHD. I call a nurse who takes a look at it and calls the doctor, but by the time they come it’s settled down again and there’s little to see. It’s probably nothing, but with Josh it’s always better to err on the side of caution.
Sunday 5th June
Josh’s wake up call is another large vomit at 7am. He settles back to sleep but the smell of elemental feed lingers in the air for hours. He seems to be tolerating his feed well as he’s not sick any more often than he was before it started. Hopefully they’ll start reducing his TPN next, as his weight’s ballooning at the moment – not helped by the extra fluids he had on Friday when, for some strange reason, he hardly drank a thing. The previous night there was air in his line they couldn’t get rid of and he had no TPN whatsoever. It’s impossible to work out quite what’s happening as both TPN and feed are meant to run over 16 hours, but they don’t always go up at the same time which makes it very confusing for whoever’s taking them down. I suspect he gets too much sometimes and the nurse I discuss this with is looking into it. It’s not helped by the fact pharmacy insist on sending his TPN up in a bag that says it should run over 20 hours. While we’re debating all this, I’m told that an incident form has been put through by the pain team regarding oral morphine being given to Josh when he was on Fentanyl, which as far as I’m aware never happened. I’m awaiting a photocopy of the form so I can see which day it was and check back with the blog. Claire and Joseph roll up at 1.45pm but Josh doesn't wake up. Joseph and I eat out and he tells me all about his day at Polhill garden centre and how he ended up with several birds perched on his arm - birds of prey, that is. We end up with free drinks as it’s twenty minutes before they arrive. When we return to the hospital, Claire’s asleep too. We say a sleepy goodbye to them both and head home in torrential rain. Our porch is just centimetres away from flooding when we pull up outside the house. I guess Claire needs a bigger butt...
