Tuesday 9th November
Joseph’s at school, my work’s been emailed off, my bag’s packed for hospital and I’ve got 20 minutes to spare before my next train. Whilst it’s tempting to do something decadent like mix cocktails or throw an impromptu chocolate fondue party, I plump for grilling a couple of gluten free sausages for Josh and ironing his pyjamas instead. Just as well as it’s only 9.30am. Josh is lying in bed using a small tennis racket to aim shuttlecocks at his occupational therapist’s head when I arrive. She manages to dodge most of them, but he’s obviously a little stronger and more accurate than she’d envisaged and a couple hit their target much to Josh’s delight. While they’re playing, Claire and I sit in the playroom to discuss the last 7 days and how we’re feeling, Both tired and distressed if truth be told. The doctor’s spot us through the window and walk in to join us for ward round. We spend the next 15 minutes discussing Josh’s health whilst sitting around tiny tables in even smaller chairs. It’s all a bit surreal to say the least, as I half expect Snow White and the seven dwarfs to appear at any moment singing ‘Heigh Ho.’ With no Bashful, Dopey or Sneezy in sight, it’s left to the 5 Docs to bring us up to speed on their plans for Josh this week. There’s nothing particularly new, although they talk about changing BMT policy in light of Josh’s eye problems to include a weekly check up rather than monthly. Neither Claire nor I can remember it ever happening monthly to be honest, so we may question this later. Josh’s teacher arrives next and I walk Claire to Kings Cross to grab a few precious more minutes together. There’s a queue where she buys a croissant for the journey and she only just makes her train. Josh and I watch footie before his audiology appointment, which is a series of hearing tests with which I’m more than familiar. The results suggest it hasn’t got worse since the last tests, but it’s shocking to see how far behind my worst ear, both his ears are. They re-adjust his hearing aids while we’re there and re-cast his ears for new ones. Josh orders one Man Utd and one Chelsea to remind him of Joseph and to help differentiate between left and right. After the test the doctor reiterates that his hearing loss is severe and most likely drugs related and that she wouldn’t expect it to ever improve. They say that if you lose one of your senses, the others become more highly attuned. With no ears and just one eye, Josh’s sense of smell should be so advanced in a few years time he’ll know what you ate for breakfast from over 2 miles away. Mind you, I’m convinced Joseph can smell chocolate from a similar distance. No bath today as Josh had one yesterday, so instead we play FIFA and read. Josh devours his sausages with a few spoonfuls of the hospital’s rice pasta and then sits back to enjoy The Simpsons with his headphones on. They meet Mary Poppins in one of the episodes and Josh laughs away as they launch into a song. Once again I’m left to marvel at his spirit and resilience. Even Homer would be proud.
Wednesday 10th November
It’s another rude awakening for Josh today. After asking a nurse if we have a time for his ultrasound today, she rings down and tells me it’s 9am. Given that she rang at 9.10 this clearly isn’t possible without the benefit of a Tardis to travel back in time, so we aim for 9.30 instead. Josh doesn’t take too kindly to being woken from his slumber but is fine once we get down there. Having said that, getting down there didn’t go too smoothly. The elevator was hijacked by a 3 year old who pressed all the buttons, sending us up rather than down and stopping at every floor on our descent. His mother seemed to find this far more amusing than we did. When we did eventually arrive at the ground floor, I had to maneuver around the child with Josh’s chair and IV stand and ended up getting caught in the closing lift door as, despite his mum’s assurances that she’d got the doors, she was actually holding the wrong side. I now have a long, thick, black dirt stripe down my polo top where the door trapped me – how very Paris chic ! Josh is due an x ray too which we cover off first. There’s nothing particularly worrying picked up on his scan and we’re back on the ward 45 minutes later in good time for physio. Josh can walk unaided now for several steps and walks into my arms to give me a huge hug. Whilst we’ve had a few disagreements with physio along the way, they have never, ever let us down. They are nearly always on time and let us know if they won’t be. Josh has come so far in the last month or so in particular and it’s mostly down to them. Exhausted from his workout he gets an hour’s kip before the music therapist pops up. I take advantage of this to nip to Starbucks and download some files for work. Or at least that’s what I thought would happen. Apparently you need a Starbucks card in order to do this and I haven’t got the time or patience. I cross the street to Tutti’s and I’m connected in seconds and enjoying a Chorizo Panini to boot. Josh’s teacher arrives at the same time as the ophthalmologist. It’s everybody’s favourite Croatian. Only this time she’s on best behavior. There is a language problem though and it comes with an attitude. She keeps calling his left eye his right eye which in a sentence along the lines of ‘ Obviously there’s no improvement in his left eye…’ is quite crucial. Every time I try to correct her, she just carries on and explains to me why he can’t see out of it and how she thought she’d already explained that. She even draws a picture of his right eye to explain this and writes ‘Right Eye’ above it and then seconds later calls it his left. It’s shocking quite frankly, but she tries hard and is far less annoying than last week so I let it drop. Josh has been making an animated movie with his teacher and I get my first glimpse this afternoon. It looks fantastic and he’s rightly proud. I stay in the room with him during his lesson as I have to wait for the ophthalmologist to return with a consent form for them to photograph his eyes. Once his lesson’s over we go down to Medical Illustration, which is a new one on me. We’re seen quickly and Josh is fantastic, following every request even though it’s obviously very difficult for him at times. The problem comes when Josh asks the man examining him if he can fix it. I explain that he knows it can’t be fixed but it’s as if it never really sank in until this moment. Josh just says ‘ So I’ll always be half blind ?’ before breaking down and sobbing his heart out. I try to console him but it’s hard not to cry myself. ‘ I just want my eye back. Why can’t they make it better ? I want two eyes like everyone else. I want to be normal.’ After lots of tears and even more hugs, he finally settles down to completes the procedure and we return to the room where I draw the curtains and we both have a huge hug and a real sob together. I explain, again, that people with what he had in his brain don’t normally survive. Medicines can’t stop the virus, the only thing that stopped it was his amazing strength to fight back and that him still being here is a miracle. Everybody is so proud of him. The way he’s regained his speech, his memory and his movement is unbelievable and all down to him. The virus attacking his eye is the last thing anyone expected but it happened so quickly there was nothing anybody, not even Josh, could do about it. It helps to tell him that his best friend is almost blind in one eye, I don’t think he’d ever thought of it quite like that. I point out that even with one eye he can still thrash me at FIFA and Joseph at Crazy Frog. He starts to cheer up and bounce back in a way only Josh can, although it doesn’t last long. He starts to cry again and questions what the point of living is if he’s nearly deaf and half blind. He starts to think about what life would be like if he was blind and even talks about having a blind dog. He even thinks it’s his fault because he rubbed his eyes so much when he was itchy. We manage to come back from the brink once again by talking about how well he’s done and how so many children alive today who seem to have everything won’t be here tomorrow or next week or in ten years time because of sudden illness or an accident or even through stupidly showing off and something going terribly wrong. We never know what life has in store. All that matters is that you have people that love you around you to help you through it and Josh has no shortage of those. We talk for an hour and both cry buckets, but by the end of it all he’s in a good place and has gone so far the other way he’s telling me how lucky he is ! I point out that’s not quite the case and he’s had some terrible luck and been through more than most people do in a lifetime, but he’s still here and he’s an amazing person and he makes us all so proud. I tell him how much Joseph sobbed when he heard about Josh’s eye and how much he’s loved and he smiles and snuggles down in bed. I stay with him until he’s asleep then rush out to pick up the keys to our Children’s Trust House where we’ve managed to negotiate using the kitchen. It was Claire’s idea and means we can cook proper edible food for him. I stop for a couple of minutes on the way back and crouch down on the pavement outside Tutti’s with my laptop to send off a couple of work emails without having to go inside and drink or eat something as I simply haven’t got the time. Josh is still asleep when I get back. There are 4 syringes sitting on the side table and I don’t know why. When I track our nurse down she doesn’t know either. Turns out they were orals left for the student nurse to give 4 hours ago but they never got round to telling her. It’s not the first time this has happened and it shouldn’t happen but it does. Josh wakes soon after. He tells me he really needed his nap because of all the crying he’d done and although he’s been asleep less than an hour, it feels like three hours to him. We watch Monster House and then a few episodes of The Simpsons together. His laughter is the best medicine possible for me. He knows that everything is being done to make sure his left eye doesn’t deteriorate, but doesn’t know that they might not be able to save it if it does. God help us if we have to explain that to him…
Thursday 11th November
Josh’s ability to bounce back is staggering. We both had a good night. He’s not weeing anywhere near as often these days and virtually gets out of bed himself to use a bottle. Every time he does one, he just stands there smiling at me and I grin back. It’s hard to imagine what’s going through his head at the moment, but I remember how I felt when I was told about my deafness, so I have a small inkling. As for his eye, I just feel sick to the pit of my stomach whenever I stop and think about it. To watch it operating as normal, seemingly, but knowing it doesn’t see anything is just horrible. When they shine a bright light straight into it and he can’t even pick up the slightest sign of it being there…it’s just so awful. He sort of cheated during a couple of his eye tests yesterday, telling us he could see things when he obviously couldn’t. I think it was the ophthalmologist’s failure to cover his good eye properly that led to it, but being Josh he soon confessed. When he saw the pictures of his eyes on screen yesterday, I think he was shocked because they’re so magnified you can’t quite tell what you’re looking at. They look like pictures of Mars taken through a powerful telescope – like a strange red planet covered with swirling cloud. He kept looking at the swirling patterns and saying ‘ No wonder I can’t see with all that stuff in the way.’ That was when he started to think that if they cleaned his blind eye, he’d be able to see again – much like wiping a dirty windscreen with a wet cloth. If only. Claire calls me and needs another day at home for her sanity and to actually accomplish something. One full day at home is never really enough to do anything. We’ve been thinking of doing longer stints sooner or later as Josh is in a better state overall and now’s as good a time as any to start. It means I’ll do an extra night, then Claire will cover Friday and Saturday. On Sunday I’ll drive down with Joseph to see the Animal Man at the National Geographic and then stay Sunday night, with Claire back late Monday so I can make a 12 month delayed hearing assessment on Tuesday morning. Confused ? So are we. Josh is reluctant to wake up as we had a late night watching TV but stirs in the end and we’re early for Physio. He manages to walk half the length of a long corridor unaided and even copes with a few stairs. As soon as we’re back on the ward, the OT calls and while Josh is playing games with her I have just enough time to pop to Waitrose to buy him gluten-free sausages to cook back at the house. When I come back his curtains are drawn and 2 nurses and the OT are standing over him while he goes to the toilet, which feels a little like overkill. Once I’ve shooed them away and sorted him out, the OT returns to play some more basic games to help his mind and fine motor skills. He begs me for a nap afterwards and on condition that he eats one of the hospital sausages, I agree. For those unfamiliar with hospital food, eating an entire sausage is on a par with waterboarding and is a tried and trusted method of torture frowned upon by Human Rights Campaigners. Josh’s teacher arrives but he’s feeling unwell. She stays with him anyway and I go back to the house to cook, just as the heavens open. I’m soaked to the skin and try to dry myself off while frying Josh’s sausages without setting my jumper on fire. When I return to the ward the curtains are closed again and Josh is sitting on the bed vomiting and screaming. He complains that his arms feel spongy and his trousers are full of diarrhoea. Again there are three people in the room but not much happening. They appear to be trying to sit him on the commode with his trousers on even though he’s already gone to the toilet. It’s an absolute mess – literally. I ask them to get a doctor as I’m worried about what he said about his arms as it could be neurological. Having ushered everyone out of the room, I calm Josh down and haul him up onto the bed to clean him up. It appears that when his teacher left she didn’t leave the nurse alarm within reach which she should have and Josh suddenly needed the toilet. He’d tried to fold the sides of the bed down but it’s impossible when you’re lying in it. No wonder he’s was upset as he must have felt so helpless. It’s not the teacher’s fault as somebody should have checked him. I’d told them I wouldn’t be back until 10 minutes after she left. It’s a little sloppy and you do fear what would happen if neither Claire nor I were here. The doctor gives him a check-up and can find nothing wrong, my theory is that he was lying on his arm and that’s why it felt numb but I keep it to myself as I want them to investigate properly. By sheer chance, I learn that he has had blood in his urine and they’ve sent a sample off to the labs. Would have been nice if they’d told me. I get the hoist and give Josh a long, hot bath which is what really soothes the savage beast and not music. After that it’s FIFA, dinner and a movie. Tonight it was going to be Disney’s Hercules but my date takes his glasses off and declares he’s too tired and wants to go to sleep just as the opening credits roll.
Friday 12th November
Back when we first started living in hospitals, about 3 years ago, I remember writing about how quickly you lose your identity in here. Your sense of who you are. Nobody ever called us by name. We were simply ‘Joshua’s mum’, or ‘Joshua’s dad.’ It was particularly disconcerting for me as most of the nurses just called me ‘Dad’, which made me feel like I’d fathered dozens of twenty something girls . Even the senior nurses who were years older than me insisted on calling me Dad. It was plain weird. Things are different now. We’ve been here so long now we’re known as Jon and Claire and are definitely considered ‘part of the furniture’ – to quote the Artful Dodger. It’s only a matter of time before one of the cleaners takes a duster to me or wipes me down with a disposable Sani-Cloth. We’ll be getting invites to the staff Christmas party next. Anyway, I digress. Josh enjoyed a long lie-in this morning as his physio session took place in our room today. After doing a few leg and stretching exercises, we ventured out into the corridor and Josh walked about 80 metres completely unaided. This brought a highly deserved round of applause from all the nurses and is a fantastic achievement as the last time he tried to take a few steps he was really unsteady and struggled to balance. After a short rest, the ophthalmologists arrive and he’s having bright lights shone into his eyes yet again. Thank goodness they’re taking the problem seriously now. As Claire has asked on several occasions when they appear to have dragged their feet, ‘ What part of their job could possibly be more important than saving a child’s sight ?’ Despite everything looking a little blurry after eye drops, Josh wants to play Harry Potter on PS2 and is in full spell when the speech therapist pops her head round the door. She asks how things are going and advises him to wear his hearing aids every day for short periods when doing different things, so he can get used to how they work in different situations. He’s not keen and it’s hardly surprising. A serious design flaw means his aids have to be turned on before he sticks them in his ears. This means there’s no way of avoiding the high pitched whistle they emit which sounds like a hundred old fashioned kettles coming to the boil in your ear drum. Josh is learning to lip read at the moment and sign language is a distinct possibility in the future - yes, it’s that severe I’m afraid. Claire arrives around this time having bumped into the immunologist that’s been studying our case. Apparently she has discovered a family with a similar history to Claire’s in Europe and there’s talk of sending Josh’s bloods over there to see if there are any similar genetics they can learn from. The ward round comes and goes with no real issues for the weekend. Josh’s elemental feed is slowly increasing, but the more we can get him to eat the less he’ll need it. He’s still not drinking and need fluids. My train takes forever to crawl home as the wheels can’t grip the rails for reasons I don’t understand, so it’s straight to school to pick Joseph up. He has Taekwondo this evening and is going for his blue stripe next week – as opposed to my black stripe from getting trapped in the lift. Josh has slept for much of the day and didn’t eat, despite Claire braving the pouring rain to get back to the house to cook for him. He’s started complaining of tummy aches and has been in tears saying ‘ it’s starting again.’ Let’s hope he’s wrong as to have gone through all this and still have a gut problem would be the devastating. His new splints arrived this afternoon but need altering and he’ll need new trainers to fit over them. Claire felt really faint when she got back to the house. All this dashing around on an empty stomach doesn’t help. She managed to get to the new Costa Coffee on the corner for a mince pie sugar rush but nearly passed out while in the queue. She felt much better after that so hopefully it’s nothing to worry about. We’ve been lucky so far with our own health. Long may it continue…
