Friday 25th February
This is a tough day to write up as I’m unsure what’s happened to Josh or what it all means. All I know is that it’s been a truly terrifying ordeal and it’s far from over. The day started on a downer with a letter from the inland revenue threatening me with debt collectors for not paying £100 interest on a sum of money that I don’t even owe. This was all cleared up back in December, but their records seem to be lagging behind. Lord help us when department cuts take place. By the time I’ve actually spoken to an advisor Joseph and I are running an hour late and it’s a mad scramble to get the car packed up and set off for London. It’s a long journey with nose-to-tail delays around Lewisham and New Cross and it’s gone 1pm before we arrive. Claire calls to let me know that Josh has a volunteer sitting in with him, so the three of us grab half an hour for lunch together. When we return, Josh seems bright enough, but his speech sounds a little slurred. Claire picks up the keys to the flat while we boys play Top Trumps Tournament. Josh seems a little confused again but nothing we haven’t seen before when he’s been on an opium-based pain killer. Having said that, it stopped a couple of days ago and should be out of his system by now. Claire takes over my cards on her return while I unpack the car and move us into the flat. I’m back just in time for Josh’s physio session which is back in the gym now he’s clear of norovirus. The physio has set the Wii up for him to play with Joseph and all seems well when we set off. We’ve forgotten Josh’s glasses so I run back to his room to collect them. What happened in the five minutes I was gone is difficult to explain and impossible to comprehend. Josh is out of his wheelchair and sitting on a chair in the gym when I get back. He has a blinding headache and his back hurts. He’s crying and screaming and says he can’t feel one of his legs. We calm him down and get him back in his wheelchair where the physio performs a couple of simple tests to check he isn’t paralysed. He’s not. Through his tears he tells us he still wants to play Wii, but unfortunately there’s only one remote which limits what he can play with Joseph. Josh is desperate to play a football game on his own which we think he’ll struggle with, but we don’t even get that far as he refuses to hold the controls while asking over and over again if he can play it. He’s making no sense at all and getting increasingly frustrated with himself. He starts screaming at the top of his voice but all that comes out are fragments of words and jumbled sentences. He calls out to me as if he wants a hug to comfort him, then grabs my face and tries to twist his fingers into my eyes and smacks me around the head. He calls to Claire and does the same to her. He’s completely vacant one minute, as if a switch has been flicked off, then screaming and lashing out the next. He wants to play, but refuses to play. He wants us to hug him, but pushes us away. He tries to climb out of his wheelchair so we have to strap him in so he doesn’t injure himself. He’s like a wild, rabid animal biting our hands and clawing at our faces. Something is very wrong. Eventually we stop trying to calm him down and wheel him back to the ward. He’s sobbing, kicking and shouting most of the way and this continues in his room. The physio was kind enough to play with Joseph in the gym so he didn’t see too much of Josh in this state, which is one less thing to worry about. A doctor and a couple of nurses are quickly on the scene but can only stand and watch what’s going on in horror. I ask them to leave as there’s nothing they can do until he’s calmed again. After 10 minutes of letting him hit me he turns his attention to Claire, first hugging her and then striking out. When the nurse comes back to give him IV Paracetamol he attacks me again, although he doesn’t strike the nurse or pull at his lines which suggests there’s some rational thought still inside him. Eventually we settle him down in bed and he goes to sleep. Claire and I can only look at each other in shock, the ferocity of what we’ve just witnessed etched indelibly in our heads. We both feel sick deep inside, not knowing why it’s happened so suddenly or what it means. Joseph returns and I take him off to the playroom while Claire and the nurse try to take his blood pressure, but he looks scared and starts to whimper softly so they give up. Claire takes Joseph off to eat and I sit in the room with Josh trying to fathom what’s happened. His blood gas shows he’s dehydrated and we give him 300ml of fluids, but it doesn’t really explain what we saw. I try to rouse him a little later as we need a blood pressure, but he still appears terrified. We manage to get the cuff on his arm but he’s moving too much to get an accurate reading so we abandon the task. At least he’s coherent now and tells me he’d like to be left alone please as he’s tired. He says he loves me and retreats back into sleep, with his thumb quickly finding its way into his mouth for comfort. Claire returns around 8pm and wants to go grab some sleep while she can, fearing a long night. I take Joseph back to the flat and push our beds together so we can snuggle up and read his new animal books from the library together. He falls asleep soon after and I make myself some cheese on toast and sit in the living room replaying the days events in my head over and over again, trying to make sense of them. My feeling is that when he wakes up he’ll be relatively okay and that the doctors will struggle to make sense of what happened. They’re already talking about doing an MRI and an EEG of his brain, but I doubt whether they’ll see any changes and there’s little point in doing anything until Monday when there are doctors around who can act on what they might see. I climb into bed next to Joseph but sleep doesn’t come easily. When it does it’s a deep, dark, fuzzy sleep that envelops me and it’s a welcome escape from reality...
Saturday 26th February
It’s a miserable day in London, but at least it’s not raining. Joseph is up early and desperate to play football. I manage to stall him until after breakfast at which point he puts his football kit on and we leave for the park. It starts to pour so we head to the hospital instead. Claire had an unsettled night and was up every hour or so. The nurse on duty last night took him off his TPN for some reason which means he’s well short of his target today and they can’t reconnect him until late this afternoon. She also left the machine running by mistake which meant he woke up screaming at 4am with his bed flooded and soaked to the skin in feed. Josh is awake and doing a sticker book on sharks when we arrive. He seems much more coherent today and appears calm. He apologises for yesterday as if he’d done something wrong and we share a big hug. In some ways it’s comforting to know he was aware of what was going on yesterday, but in others it’s quite disconcerting and even more baffling. We all play Top Trumps and as the game progresses it becomes clear that Josh is still struggling neurologically. His hearing has declined but it’s not what he can or can’t hear that’s the worry, it’s what he says and how confused he seems to be. Josh wants to watch a movie and while the boys snuggle up in bed, Claire returns to the flat to cook tuna and pasta for them. She took the lead on letting Josh eat again and the dieticians all pretty much fell into line. He eats a few mouthfuls on her return, which is more than Joseph manages, and then wants to go to sleep. It’s brightened up a little and Claire takes Joseph off to climb the 311 steps to the top of the Monument tower and earn a certificate. While they’re out I take advantage of a few hours alone to sort, clean and tidy up Josh’s room. With everything going on yesterday, I forgot to tell you about the conversation Claire and I had over lunch. Basically, Josh’s bone marrow aspirate has revealed a lack of vitamin B12 even though it’s present in his blood. They don’t know why this is the case but they’ve also discovered the nucleus of his bone marrow is under stress and they think it’s tiring itself out producing platelets that are failing to develop properly. A top up of the right stem cells from his donor could help this and they are looking to action this as soon as possible, although it’s impossible to put an actual time frame on it. Josh wakes while I’m on the phone to my brother and needs the toilet. I hang up and help him out of bed but he tries to be independent instead and falls badly. He’s left with two huge bruises on his legs and one on his arm. He was incredibly lucky not to land on his head. He’s adamant he doesn’t want a bath as he’s afraid of falling again, but once Claire and Joseph are back we manage to persuade him and all head off to the bathroom together. Once he’s clean and scrubbed he plays 2 games of FIFA 11 with Joseph which both end in 1-1 draws. Joseph is hungry and he and Claire head off to Gourmet Burger while Josh and I watch last week’s Champions league football. He eats a little more pasta and settles down to watch Push the Button just as Claire and Joseph return around 8pm. Josh’s blood pressure is surprisingly low and the doctors decide not to give him any of his hyper-tension drugs. Joseph has a bath back at the flat and we read about leopards in bed. I finally eat around 10pm while I watch Match of the Day. Things are still not good with Josh, but there’s little we can do other than wait and see what happens over the next 24 hours or so...
Sunday 27th February
It’s not a good day, even by our low standards. Joseph and I have been up a couple of hours when Claire calls at 9am. She hasn’t slept at all. Josh spent the night hallucinating and having conversations with imaginary people. Claire woke to hear him speaking to someone called Margaret, who’s one of the volunteers here, explaining how I recorded his favourite TV programmes at home and we watched them here. He spoke to Joseph, who he imagined was under his bed and heard songs and voices in his head all night long. He’s obsessing about food again and asking over and over again why he can’t eat what he wants and is desperate for tuna and pasta at 5am. He doesn’t recognise the nurses, stares blankly at the clock when asked the time and can’t repeat a list of more than 3 names without getting confused. Claire shows him photos of England footballers that he just about recognises but when he tries to write down their names his mind goes blank and he can’t remember how to spell. Claire was tired, frightened and frustrated and broke down crying at 4am this morning. The doctors have looked at his latest blood gas, a shorthand way of assessing the body’s balance, and told us nothing more than it’s not right. When they check it later, it appears to be much better. Even if his behaviour was down to an imbalance of electrolytes or lack of fluids, the question is why is there an imbalance ? I can hear him babbling away in the background when I’m on the phone to Claire. She’s put the TV on in the hope that he loses himself in what he’s watching and switches off, but it doesn’t seem to be working. Joseph and I get dressed and head for the park to play football while it’s still dry. We spend a good 90 minutes kicking a ball around one the sodden Astroturf pitches at the back of Coram Fields, during which time the sun comes out and it feels like spring. Back at the flat, I strip the beds, leave the laundry in the basement of the house and pack the car up. At the hospital Josh is still resisting sleep and is sitting up in bed eating. As soon as I walk in, he tells me he’s seeing ghosts of people that aren’t there which is ‘a bit weird’ to use his own words. He tells me mum is feeling ill and keeps being sick which, of course, she isn’t. He’s also convinced she’s having a baby, which is news to me. He says he knows who Joseph and I are and that we’re scores of 60 and 62 on his dartboard. The songs and voices are continuing in his head and almost everything he says is slightly disconnected from the real world – as if his mind has slipped into another dimension and his mouth is commentating on it. He settles down to try and sleep again around 12.30pm at which point Joseph and I disappear to Pizza Express which we have to ourselves. Joseph’s taking everything in his stride as usual and his meal ends in complete and utter decadence with dough balls dipped in Nutella and a babycino. Josh is still awake when we get back and still making very little sense. He asks to play Sorry ! but starts falling asleep between turns and doesn’t quite get what’s going on. Claire’s concerned that he might be seeing shadows and his good eye might be infected. This is unlikely as he’s on Acyclovir again, but still possible. There’s little we can do other than bring Wednesday’s ophthalmology examination forward to Monday, however, as they all go home at the weekend and aren’t on call. Once Claire and Joseph head off home, I try to settle Josh as he must need sleep desperately. He tries valiantly but doesn’t succeed. Every time it looks like he’s nodding off he’ll suddenly laugh or cower or whimper depending on what he’s imagining. His conversations are frighteningly real and the intonations in his voice suggest there really is someone in the room with him and that I’m the one who’s going insane. He suddenly remembers the Carling Cup final is on TV and sits up and asks for his glasses. He watches the match, but I’m not sure how much he takes in and his ramblings continue. This pretty much sets the pattern for the evening and he’s still talking away at 10pm. Some of his visions are terrifying with white ants on his sheets and spiders perched on his shoulders, but the majority aren’t and he giggles or shouts and chats his way through one scenario after another. His blood pressure remains on the low side and he has a platelet transfusion he didn’t really need simply because his blood results were wrong. Whilst his good eye is closed while he tries to sleep, his blind eye remains open and roves around the room constantly, as if he can see the voices he’s hearing with it, which is pretty spooky and makes me keep thinking of The Sixth Sense. Claire suggested giving him Midazolam before she went and I mention it to one of the nurses as a possibility if he’s still awake at 1am which he is. Midazolam is a sedative drug Josh has had before when he’s needed calming down or suffered from severe insomnia but it tends not to work unless neuroIogy get involved and sign him off for a quadruple dose. I’d asked for the doctor on duty to come up with a plan but simply hear back that Midazolam is fine. One of the senior nurses is not happy giving it unless the doctor has examined him. Mercifully he just comes to the room and has a chat with me instead. In the end we try a double dose of Melatonin which is more natural but it doesn’t do the trick. Rather than try anything else, I resign myself to not sleeping and listening to Josh babble away, only getting up if he’s distressed or calls my name – either for the toilet or because he’s imagined I’m talking to him. It’s sometime after 5am that he finally settles and falls asleep and I do likewise...
Monday 28th February
Throughout all his hallucinations last night, even the scary ones, Josh remained polite and loving, warm and wonderful which only served to make the whole thing all the more distressing. We didn’t expect to be in this situation again. We didn’t expect lighting to strike twice. Will he be stuck in this confused state forever ? The worst thing is that after nearly 3 years of hospitalisation we’re no nearer to any medical explanations for any one of Josh’s umpteen problems. I watched ‘The Exorcism of Emily Rose’ last night. It’s based on a true story of a Catholic priest on trial after a teenage girl dies following a failed Exorcism. He’s found guilty of negligence having told her not to take a drug which he believed was stopping him from exorcising the demon within her. Doctors were able to rationalise all the symptoms of demonic possession as psychotic behaviour or epilepsy, yet none of the drugs they prescribed for her actually worked - so who’s to say they were right and he was wrong ? Thankfully Josh hasn’t started speaking in ancient Hebrew, vomiting pea soup or showing signs of stigmata yet and I’m not about to call Father Bryan round to perform an exorcism, but sometimes medical science can fail to find answers because it’s looking in the wrong place. Having had only 2 hours sleep, I’m a little jaded and don’t take in everything the gastro team say when they come up to pay Josh a visit around midday. At its most basic they’re still puzzled by Josh’s pancreatitis bouts and shocked by his neurological decline. The most immediate things they can do are try to up his selenium levels and try a less fatty TPN. Josh wakes just before they leave and not only recognises Dr Elawad but can pronounce his name which is a positive start to the day. Overall he’s much brighter than yesterday and only mildly distracted by what he says is buzzing and music in his head. Ophthalmology are coming up at 2pm and I put Josh’s eye drops in. He’s less keen than usual, but we somehow manage without too many tears. Josh’s teacher arrives at 1.30pm which means I have 30 minutes to get to Waitrose and back to the house to cook for him before his eye examination. It should be possible but I fail miserably as Claire told me to ask the fishmonger to cut a small slice off a salmon fillet which they flatly refuse to do. Personally I can’t blame them as they’re sold by fillet price rather than weight, but I persist as I’m under orders and apparently they’ve done it before. What I didn’t know is that they normally have a large filleted salmon they can slice it off, but it appears to have escaped the fisherman’s hook today. Once I mention Great Ormond Street they eventually relent and give me half a fillet, just to shut me up, but I have to rush back to the ward before I can poach it. Josh’s teacher went over some of the fair trade work she did with him last year and he remembered most of it, but had a few big blanks. He also continued to hallucinate while she was there. Ophthalmology are running an hour late but give Josh an all clear. After that he’s straight into an EEG which involves 16 wires being attached to his head with superglue while Josh rattles through several more sticker books his grandpa bought him last Christmas. Josh doesn’t want a bath but I need to get the gluey gunk out of his hair before it dries so we manage to do it in his wheelchair with his back to the sink, like they do in a hairdressers. I resist giving him blonde highlights or a demi-perm and a nurse sits in with him for 20 minutes afterwards so I can nip to the house to cook. He eats more than he has for weeks before returning to his stickers for the rest of the afternoon. Miraculously, Josh appears to be back to his normal self now and is coherent, witty and great fun to be with. He also thrashes me at Monopoly Streets, which suggests he really is on the mend again. I’d asked the doctors to have a proper plan in place for tonight in case his hallucinations continue, but when he crawls into bed around 8pm he’s fast asleep before I even have time to cover him with a sheet. His demons appear to have been banished for now, but it’s anyone’s guess if and when they’ll return...
Tuesday 1st March
Josh sleeps soundly until gone 5am when he needs a wee. It’s his best night in a long time and mine too. He doesn’t wake again until noon, by which time we’ve had visits from both neurology and gastro. Neurology are interested in giving him a quick assessment before his MRI but will come back this afternoon as he’s still asleep. A few minutes later a clinical fellow arrives from gastro, which is very confusing as she’s a woman. She’s putting together a proper plan regarding TPN and feeding and is fascinated by Josh’s eating habits and what his stools are like. Everything she says makes sense but I have a feeling that any new dietary plan will contradict what the gastro consultants agreed to yesterday, which was to let Josh eat a little of anything he liked to give him a much needed psychological boost. As it currently stands a breakdown in communication means they’re not sending any meals up and nobody seems to know who we need to contact to rectify the situation. When I nip out to grab lunch, I buy some cheddar for Josh. It’s the first time he’s had proper cheese for years and whilst he only eats enough to bait a couple of mouse traps, he really savours the taste. We’ve followed such strict orders on Josh’s diet for so long without it making a blind bit of difference that I’m quite happy to be a rebel. We see a neurologist in the afternoon, but it’s not the one that said she’d be back. She’s excellent with Josh and does a few basic tests whilst acknowledging there’s no point in doing more until he’s had a new MRI. The EEG showed nothing, by the way. Physio takes place early today and whilst Josh practices walking down the corridor, the BMT doctors come to see me. They’ve discovered HHV6 virus in Joshua’s bone marrow and believe it could be responsible for what’s been happening to him over the last few months. By sheer coincidence, I was checking something on the blog yesterday and noted that they found it in his brain back on 13th July 2010 when we were first admitted. They go off to check their records and confirm that’s correct. Whether it disappeared after treatment and has just come back, or they’ve simply not been screening for it remains to be seen but it’s not very reassuring that it dropped off the radar for 7 months. The virus causes pancreatitis, encephalitis and suppresses the bone marrow, so it matches all Josh’s symptoms. It can be treated with an anti-viral drug which they are planning to start as soon as they can. In the meantime, Josh has another platelet transfusion in the afternoon and remains on good form. He enjoys another sticker book marathon,then proceeds to thrash me in every single game of FIFA. At 7pm we turn on the TV to watch the Man Utd v Chelsea match on Sky Sports 2 only to find the hospital appears to have stopped subscribing. Now I’m all for NHS cutbacks, but surely they could have just sacked a couple of surgeons instead ? An old college mate sent me a link to a website where we could watch the game live on our iPad using his password, but unfortunately Apple are in dispute with Adobe flash players so we couldn’t stream it online either. Josh was really upset but bounced back in his own inimitable way and laughed along at some of his favourite shows on Disney XD instead. As it turns out Man Utd lost, so he was quite relieved he didn’t watch it.
Wednesday 2nd March
Another good night, let’s hope they continue as Claire’s doing the next two. Half term meant I’ve only spent two nights at home since 17th February and I’m looking forward to sleeping in my own bed again – even though Joseph will probably take up most of it. Lord knows what it must feel like for Josh to be away from home for so long. Housekeeping neglected to prepare any cooled boiled water bottles for the children to drink before they went home, so I spent half the night tracking down sterilized water popsicles in various freezers to leave out and melt overnight. After wanting to hang, draw and quarter the man in charge of our in-house entertainment system last night, he’s rather pleasant and very humble when he comes to visit this morning. He’s at a loss as to why we can’t get Sky 2 as it runs off the same satellite as the Sky channels we do have and vows to fix the problem. Ward round is short but not particularly sweet as there’s still no date for Josh’s MRI and lumbar puncture, which is far more important now we know what we’re looking for. I’m told it’s difficult to get a slot booked, but it definitely won’t be today. Claire arrives around 11am and is delighted to see Josh sitting up doing yet more stickers. A gastro doctor sticks her head around the door to tell us what they’re looking to do over the next week or so. They haven’t been told about the discovery of HHV6 yet, even though it impacts on a number of their plans. Communication between departments still isn’t good here and we make a point of reminding everyone of that fact. While Claire and I are catching up, and just after Josh has eaten a little and drunk some water, we’re told there’s an MRA slot for him in a couple of hours. We can’t take it as he needs to go under anaesthetic this time because of the lumbar puncture and can’t now he’s had food and fluids. It’s another fine mess that Laurel and Hardy would be proud of. Josh started falling asleep in his wheelchair soon after I left to pick Joseph up and asked to go to bed. He slept through school and didn’t wake until around 5pm. After playing games with Claire for a short time he felt nauseous and vomited violently soon afterwards. He went back to bed soon after and is still asleep when Claire calls me around 8pm. His elemental feed was due to start again tonight but won’t now. His lumbar puncture and MRI scan are scheduled for tomorrow morning, so hopefully we’ll know more after that. Claire fears the vomiting and tiredness are yet another bout of pancreatitis building up...
