Saturday 20th November
Today I received a copy of a letter from the consultant that saw Josh about his hearing last week. The letter itself went to the head of BMT and our GP updating them on Josh’s hearing. I’m confused. It details how Josh’s hearing in his left ear is slightly better than his right and his hearing tests support that. It then goes on to point out two abnormalities in his left ear whereas his right ear is described as normal. Now he’s only got two ears, so you’d hope they haven’t made a mistake here but is his hearing better in his left despite the abnormalities in his ‘Tympanic Membranes’ or are they getting his ears mixed up ? I have no idea but we need to find out. Given that ophthalmology don’t appear to know his right eye from his left it’s impossible to take the letter at face value until somebody can confirm the facts. It’s no wonder you hear about people having the wrong limbs amputated. Arse and elbow. What’s the difference again exactly ? The rest of the day is relatively relaxing. Joseph had his Taekwondo grading at the local scout hall and he was magnificent. I’m often secretly critical as he looks like he’s going through the motions, but today when it matters he’s the best in his class by such a degree that the instructor calls out to me across a packed auditorium and recommends we move him up a class or two. I was knocked out by how much power and effort he put into every kick and punch - not literally knocked out as I was a sitting a few rows back in the crowd. We spent the rest of the day at home playing games and he ended the day dressed up as Batman demonstrating all his best moves on me. Ouch ! Claire texts to let me know Josh is having another good day and staying up to watch X Factor. With some spare time on my hands I plant myself down in front of the TV with a big bowl of microwave butter popcorn and a long, cool drink. My only dilemma is whether to watch X Factor on catch up or the remake of Nightmare on Elm Street on Filmflex. I go for the latter as the thought of watching Wagner murder ‘Hey Jude’ is infinitely scarier than Freddie Krueger could ever be…
Sunday 21st November
It’s change around Sunday again. We’ve fallen into a pattern of always making the day of rest a day of activity because there’s less traffic on the roads, more places to park and Josh gets to see his brother for a couple of hours. This time it’s a little different because Joseph and I aren’t alone in the car. We pick up Claire’s ma and pa en-route, by which time Joseph has already demolished most of his packed lunch, and arrive at the hospital just before midday. Arriving en-mass provides a welcome change of pace and we all head off to the playroom. Joseph wheels himself down the corridor in Josh’s chair while Josh walks slowly alongside. Go figure. We play a couple of games of Mandarin, the best board game you’ve never heard of, which Josh and Joseph manage to win working together as a team. Following that we play Deadly 60, for which Claire deserves a bravery award for letting us leave all the snakes and spiders in the pack. It couldn’t have been easy facing her worst phobias and it made her jumpier than Gillian McKeith in a bushtucker trial. Thankfully Claire didn’t faint, although I swear she was hyperventilating when she turned over the Goliath Bird Eating Spider. While they deal another hand, I nip out to move the car to another space as we’re on double yellow lines and it’s been nearly 3 hours since we arrived. When I come back the boys have had a minor disagreement and Joseph is sulking under the table. They’re friends again within a few minutes and after nearly 5 months of not seeing each other it’s hardly surprising they have the occasional clash. To be honest, we’ve all been living apart so long that being together again will be difficult to adapt to - if and when it ever happens. With everybody gone, I have trouble persuading Josh to have a bath. He eventually comes round and once he’s in there he’s reluctant to come out and I have to keep topping him up with hot water. We play Lego Harry Potter for an hour but I somehow manage to lose all his progress from the last 24 hours by pressing the wrong button in my haste to turn it off so he can watch the making of The Deathly Hallows on ITV. It’s called ‘Behind the magic’ and I’m left wishing I could wave a wand and make Josh see and hear properly again. And restore his PS3 memory, obviously. We watch Match of the Day together next, with neither of us aware of the scores, and I can’t remember seeing him so excited as Arsenal and Chelsea both lose and United scrape a win. He sits and quietly reads the Beano annual Claire’s mum and dad bought him until X Factor’s on. Wagner staying in is a bit of a shock but what’s even more of a shock is Josh’s loud, ecstatic cheer when One Direction go through. It brings several nurses rushing in thinking he’s in pain. Most of them stay until the result has been decided. He stays up for Celebrity too and his mind and mouth remains active for a good hour after that before he finally nods off. He’s due a platelet transfusion later tonight as his good eye is continuing to haemorrhage and it will hopefully help it to settle.
Monday 22nd November
Being couped up in hospital for months on end changes the way you look at so many things. You don’t take anything for granted. Your children, your wife, your home, your job – all literally there one day and gone the next. You can’t even rely on your next meal being there when you need it. We’re so used to living here now we’re almost afraid to leave. Going home would be difficult enough, but the idea of living somewhere new, like Tadworth, will really take some getting used to. Quite when or if that will happen is anybody’s guess. In the meantime, life goes on at GOSH and Josh had another good day overall. Physio was fine – although a bit more of an effort after his late night. We play Harry Potter again and Josh is pleasantly surprised to see we’re back to the same level we were on yesterday as I was up at 6.30am playing it while he was asleep to right my mistake. When his teacher arrives I’m off like a shot, but as usual I have no idea where. I’m like a dog let off a leash – so excited to be out I just bound around without having any idea which direction I should go in and what I should do. In the end I opt for a noodle bar as I only have 30 minutes and I’m starving. Josh is asleep on my return, which I expected after a busy morning. Just as I’m curling up on my bed and set to follow suit, ophthalmology arrive. They really are trying hard at the moment but they still can’t quite get the relationship bit right – either with Josh or me. I have to wake Josh his eye drops which he’s fine about but he often struggles to open his eyes for the drops and it can take a few minutes. Once we’ve finished, the ophthalmologist asks me to step outside as he wants a ‘quiet word with Dad alone.’ I’m reluctant to do this as Josh is upset and complaining that his neck hurts but I’m worried about Josh’s eyes now so I follow him out. In the corridor he tries to tell me that seeing my son worrying about having drops put in must really upset me as a father and if I just let him force Josh’s eyes open and virtually ram them in as it won’t damage his eye and would be better for everyone concerned. I’m not so sure. Josh did really well considering he was fast asleep 2 minutes before the drops went in and I suspect this is a case of saving him time rather than putting the child first. I point out, not for the first time, that even British Gas tell you if they’re coming in the morning or the afternoon yet we never get any warning whatsoever that ophthalmology are popping up. He tells me it’s difficult, but they’ll try to let us know. How difficult can it be when every other department operates that way ? Josh and I play cards until he comes back to carry out the examination. Again Josh does well and everything is okay except the small talk. Seeing Josh’s Harry Potter Top Trumps he excitedly tells Josh the new movie is out at the cinema and asks if he’s going to see it. This is a bit like telling a starving African there’s a great new restaurant opened in Soho and asking if he’s booked a table. I try to make him feel better by saying there’s a possibility we could see it in a few weeks once the crowds have disappeared and he tells us he takes his 2 year old son on Wednesday mornings when there’s nobody around because he cries all the way through every film he sees. Quite why he takes him when he gets so upset is beyond me, but I make a mental note never to go to the cinema on a Wednesday just in case we end up sitting behind them. Josh’s patience wears thin and I start to worry again when calls for back up and my favourite Croatian comes up to give a second opinion. I’m getting more and more concerned as they look at his eyes for ages, shining really bright lights in and making him very distressed. Why are they doing this ? What have they uncovered ? Nothing as it turns out. The first ophthalmologist just can’t see the hemorrhage in Josh’s good eye despite repeated looks and the other ophthalmologist wants to show him how to spot it. Eventually I call a halt to proceedings as Josh is in tears and if he hasn’t found it after 15 minutes of looking he’s never going to spot it. We watch TV, read and chat once they’ve gone and Josh eats a mammoth portion of Tuna Pasta. He’s settling down to sleep again by 6pm though, so he’s obviously still tired. So am I to be honest.
Tuesday 23rd November
In many ways we’re treading water again here at GOSH. We’re waiting to hear about funding for Tadworth and whether they can take him given his medical needs. We’re waiting on his eye – although I was told yesterday that they would want to see him here once a week even if we’re at Tadworth which makes sense, and if anything we’d want to know if that’s often enough. Having said that, it’s all well and good checking his eye every other day, but what will they do if they spot any changes ? Last time we spoke it appeared there was nothing that could be done anyway. Josh is struggling today with a cricked neck which makes getting him up even harder than normal. He does make it down to physio, however, and beats me at both giant Connect 4 and basketball which gives his confidence a real boost and puts a spring in his step. He wants a nap as soon as he gets back and asks me to wake him 30 minutes before his teacher – not that she’s asleep. Ward round takes place in the corridor so we don’t wake him unnecessarily. They will continue to slowly reduce his steroids. The general consensus is that it was purely the virus that destroyed Josh’s eye and not his immune system which is good news if it’s true, but it’s just conjecture from what I can gather. They’re still trying to understand the audiology letter we received so we’re no closer on that front. They are starting him on a new anti-viral drug as soon as they can which is less toxic on his kidneys. This has been talked about for several weeks now but has yet to happen. If they hadn’t stopped his anti-viral drugs a month or so ago he wouldn’t be blind, but they did it to rest his kidneys believing the virus had gone After school we play FIFA for an hour then head off for bath. The hot water works wonders on Josh’s neck but when the water drains away it floods the bathroom floor. Josh is fine but I have to wear my PJ bottoms for the rest of the day while my jeans dry off. Complaining of yet another headache, Josh goes straight to sleep but wakes up a couple of hours later feeling refreshed. We watch Disney’s ‘Hercules’ which neither of us have seen and he drifts off soon after it finishes. His best friend is down tomorrow and he’ll need his sleep as it’ll be a busy day all round.
Wednesday 24th November
Boy does Josh deserve a break. Last night was a shocker by most people’s standards, although nothing too serious as far as he’s concerned. He found it difficult to get comfortable and drifted in and out of sleep until midnight when he vomited and had diarrhoea. When it happened again a few hours later and I had to change his sheets, I couldn’t find a nurse so I turned off his feed and left a big note up saying why and when I’d done it. Someone turned it back on which resulted in him throwing up again two more times before the night was over – both times with diarrhoea. It’s so unfair that he should get so little sleep and be ill the day before his friend comes up. As I lift him from the commode back onto the bed he glances up at the clock and tells me he still has two hours to get some sleep before the eye doctor comes - ‘ So that’s one good thing,’ he adds before asking me to cancel his gym session in case it makes him too tired to play afterwards. It’s difficult to say if the vomiting is down to his feed going up by 5ml an hour or being more concentrated as he could just as easily have caught a bug. Either way it’s another setback at precisely the time we didn’t need one. One of Josh’s expensive squidgy pillows that mould themselves round your head appears to have gone missing too. My guess is the nurse threw it in the laundry by mistake when she changed his bed while we were at gym. It’s the second that’s gone in the last few months and our third overall. It could have been worse, one mother lost an iPod that way a couple of years back. I have to wake Josh up at 8.30am to have eye drops put in by a nurse. This is an hour earlier than anticipated but he’s a true star, which just goes to show that it’s how it’s done rather than when it’s done that upsets him. Ophthalmology arrive late but had called ahead to let us know which is a vast improvement on their previous behaviour. I wake Josh again and my favourite Croatian is on good form, very relaxed and organized which is a real breath of fresh air. We’re straight down to Medical Illustration and Photography and seen by the same guy as last time, who’s also excellent. My mind finds it hard to shut out memories of last time we were there and how upset Josh was when it suddenly hit home that he’d never see out of his right eye again. He remembers too but appears completely unaffected by it, calmly telling the technician he can see the pictures of his eye properly this time as he’s not crying. He appears fascinated by the shapes which are like cloud formations across the images of his eyes and sees horses, frogs and several other animals in the close up shots. At first we both think he’s mad but we look a little closer we start to see them too. Maybe we’re all mad. Unfortunately the face of Christ doesn’t appear otherwise we would have alerted the media and made a fortune. To me his eyes still look like red planets and there’s nothing new to report. We give gym a miss and head back to the ward just as Claire arrives. She’s been travelling round the hospital trying to find us but always one step behind. Josh’s friend Nick arrives soon after bearing gifts which are greatly appreciated as we still have to battle boredom in here every day. He’s not allowed on the ward as he’s not a named carer or relative so we have to go off-site and set up home in a small broom closet that doubles as a playroom. I skedaddle soon after I’ve set them up playing FIFA and make my train with enough time to spare to pick up some sushi – not the easiest thing to eat on the 1.09pm out of City Thameslink, but I’m starving and just about manage not to cover myself in soy sauce and wasabi as we head south towards Bromley. The car’s in for a service and I get a call telling me it’s ready early which is great news because it means I can pick it up before picking Joseph up from school. Unfortunately they want to discuss a few other things that need doing, but when I call back there’s nobody around that can explain what. They promise to call straight back but I miss my slot at the gym waiting and end up pushing Joseph’s bike to school instead so he can ride back. He bounds out of the classroom as usual and once I’ve defrosted his hands at home we play together until the car’s ready, then he cycles all the way to the garage with his reflective coat on. The service costs a small fortune, but smaller than we’d expected. The extras we declded not to take them up on included £68.29 for a new cupholder on the dashboard and £129,81 for the high tones to be replaced on our horn. Audi certainly won’t be going bust in my lifetime. Josh was shattered after Nick went and only stayed awake long enough to have his new hearing aids fitted. They whistle a little less but will still take some getting used to. Audiology finally explained to Claire that the confusing letter they sent, even by their own admission, basically says that Josh’s better ear is his left in spite of problems the right doesn’t have. In theory this means it could improve slightly in a few months or so, although we shouldn’t hold our breath. It’s hard to put into words how well Josh appears to handle everything life throws at him and yet still continues to laugh and smile, so I won’t even try. Suffice to say we love him so much it hurts.
Thursday 25th November
It’s been a while since Claire’s butt had a mention, but today one of my chores is to attach a long hose to it so it can drain properly rather than flood the porch. I somehow manage to do this without thinking of colonic irrigation once. It’s a day of catching up on shopping, washing, ironing and work. I ring John Lewis about our DVD recorder which is playing up. It’s still under guarantee but I can’t afford to be without it while it’s repaired as I record all Josh’s favourite TV shows which we then watch in hospital. It’s at the discretion of the branch, but apparently they have machines they can loan to you while yours is repaired. It sounds like a good idea and I’ll try and take it back to Bluewater on Monday before it breaks down completely. In this digital age you’d expect equipment to be more reliable rather than less but this is the 6th DVD recorder or player we’ve had a problem with in the last 5 years. We’re generally given a replacement as they’re still under guarantee and too expensive to fix. Hopefully that will be the case again. Christmas comes early to our house this afternoon as I take advantage of a spare hour to put the tree up in our living room before picking Joseph up and taking him to tennis. Josh is still suffering at GOSH and has caught a Norovirus which has swept through the hospital. Robin, the companion ward to Fox, has already been closed down and parents sent home. It’s a relief, to be honest, as Josh should be strong enough to fight it and there are so many worse things it could have been. Claire appears to be okay and I feel fine at the moment . Let’s hope we stay that way otherwise we’d have to leave Josh on his own for a couple of days and I really don’t think that’s a good idea at the moment…
