Wednesday 20th October
Got carried away with an idea I was working on last night and finally crawled into bed around 4am. When Joseph wakes up a few hours later, I let him watch CBBC while I while I double check everything I did - by which time it’s a mad rush to get him ready for school. As soon as I’m back it’s a last minute bag packing session and off to the station. The thing is, I’ve no idea how many days or nights it will be before I’m home again. This is particularly distressing as there’s a limit to how long one pair of pants and socks will last. Claire and I haven’t had a chance to think about, let alone discuss, how living in London for over a week will impact on all our lives. In theory it’s great, but in our heads we’re remembering our last stay when Josh was far more mobile and Joseph was two years younger and less exhausting. The house is a 4 storey terrace on Grays Inn Road just a 5 minute walk from the hospital. There’s a living room on the ground floor which Josh can use, but quite how we get him in and out of his wheelchair and onto a comfortable sofa is anyone’s guess. Worse still, if he has any little accidents it will be difficult to change him without going all the way back to the ward and hoisting him back into bed. The kitchen and toilet are in the basement, so he certainly won’t be venturing down there and our bedroom will be upstairs but we don’t yet know which floor. Last time we stayed there, Joseph, Claire and I all slept in the same room as nobody was allowed to stay overnight with Josh on the ward. Whoever was with him would have to creep back at around midnight, step over Joseph’s mattress on the floor and slide into a single bed next to our other half. As you can imagine this wasn’t easy to do in total darkness without waking everyone in the room, if not the entire house. Our trickiest moment came when the front door lock stuck and I had to climb over the spiked railings, drop down 10 feet into the basement area and wait for Claire to let me in through the kitchen. I nearly lost far more than my dignity on those spikes, I can tell you. Josh joined us several times at the house and even slept in the room on more than one occasion, although that’s a non-starter this time, obviously. Back to the present day and I drop my bags off at GOSH before running through all the work I’ve done with the guys at the agency I’m working for. They appear to be extremely happy, and whilst I say I’ll try and free up another day next week to craft the last bit of the presentation, I’ve no idea how viable that will be. The moment that meeting’s over, it’s across town to look at the first edits on another project whilst trying to ensure I’m back for 2pm as Josh’s teacher finishes then and Claire will already have set off home. Just make it back with seconds to spare and Josh is an absolute joy all afternoon. We catch up on last weekend’s footie and natter away about how the season’s going like two old fogeys down the pub. Then we nip down to the playroom until his bum goes numb in his wheelchair, which takes less than an hour this time. Josh is asleep soon after we return to the room and he’s really earned that right today, as he had another good session in the gym again from what the nurses tell me. As for me, I’d like to think I’ve earned an early night too, but there are still a couple of things bugging me on a job I’m doing and after that The Apprentice is on…
Thursday 21st October
Just one wee problem overnight and it really was a wee problem. Josh is quite positive at the moment but, try as he might, he just couldn’t manage a tinkle until the early hours of the morning. Luckily the nurse that tried to badger him into weeing the other day wasn’t on duty. Maybe Lord Sugar fired her for not making the grade. Josh was very settled otherwise, although he had a nightmare at one point and screamed out ‘ Get him off him,’ at the top of his voice. He immediately knew it was a bad dream rather than an hallucination, which is a good sign, and went straight back to sleep. So did I once my heart had stopped pounding. When he finally wakes up, he’s even more himself than yesterday and his trademark quips and quick witted banter are definitely back with a vengeance. His physio session takes place in his room today and he manages to stand up with support and transferred over into his chair without a hoist. He really is making progress on a daily basis, as I soon find out in the playroom when I narrowly win at golf but get thrashed in the Quidditch World Cup. At the physio’s request, we bleep her when he’s ready to get back into bed, but Josh’s back and bum ache from sitting and I end up physically hauling him out of the chair myself and plopping him down on the bed before she arrives. With no allotted time for his teacher today, I’m not sure how or when I’m going to eat, although it’s tempting to sneak out when he falls asleep. I resist the idea and work instead. His psychologist arrives at 2pm to complete some assessments on him, but seeing him asleep promises to come back later. We are still no closer to knowing how next week will pan out. Claire and I came up with a skeletal plan that involves her not coming up until Saturday and one or other of us taking Joseph back home a couple of times during the half-term break for sanity’s sake. We’re aiming to take him to Madame Tussauds to see the Marvel super hero exhibition, the Natural History Museum and either the Tower of London or St Paul’s before the end of next week, so it will be an action packed stay in the Capital. The occupational therapist arrives around 3.30pm just as I’m waking Josh. It was an unscheduled, but highly welcome appearance and he manages to stay awake for 15 minutes of Lego before his tummy starts to grumble and he can’t continue. At this point things start to become a little surreal as a doctor pops in to ask if Josh wants to meet the Lion King cast. I’m unclear whether he can, given his low immune system, but the doctor doesn’t appear to be too worried. When I ask if it’s okay for him to come into contact with animals, he looks concerned and hesitates for a moment before realising I’m not serious. Two minutes later, Nala, Simba and Simba’s Dad (whose name neither of us can remember ) are in the room standing next to his bed. The costumes are spectacular. Simba’s head dress is at least two foot taller than our doorway and he nearly beheads himself on the way in. They seem friendly enough, given that they’re actually predatory carnivores, but it’s a shame they just chatted rather than sing a few lines from ‘Circle of Life’. I didn’t dare ask them to do this, just in case they’re dancers and mime to someone else’s voices on stage. Miaow – watch those claws ! Nala blows Josh a big kiss as she leaves and tells him to catch it. He promptly does and is left with a great big smile on his face. I’m left wondering if all his hallucinations about The Jungle Book being performed on the scaffolding outside our 5th floor window were really hallucinations after all… After a long bath that comes close to beating our unofficial world record but doesn’t quite, we have a second Quidditch session in the playroom. The play specialist sits in for me for 15 minutes while I run out to get some food, but she fares little better than I did against ‘The Nintendo Kid.’ For the record, we no longer have hospital food now that Josh eats rice and chicken. We were encouraged to carry on ordering, but it felt wrong as they’re meant to be meals for patients not parents. I miss them in a way, as it’s hard to get out some days, but I can’t say eating them was ever a pleasure. Josh has a marathon sing-a-long session to ‘Oliver’ on DVD once he’s back in bed. He still remembers all the words to every song and it’s hard to believe that only a few short weeks ago we thought we may never hear his voice again.’ Miraculous’ is an over used word these days, applied to anything from an X factor performance to a football team’s cup run, but I can’t think of a better one to describe his recovery. He is a true Lion King and his continued courage fills me with pride.
Friday 22nd October
Woke up around 6am to hear Josh shouting ‘ You’re hurting me, stop it !’ Assuming it was another nightmare, I leapt out of bed only to find a nurse fiddling with his tummy peg, which she tells me is blocked. Warm water usually does the trick and after sending her off to find some, I manage to get it flowing again. She blocks it again almost immediately. This time it takes me a good 10 minutes before I finally manage to fix it. Whether there’s a problem developing again or she just tried to put his medicines down too quickly remains to be seen. Josh’s day kicks off with a trip to the gym where he not only manages to smack one of the physios on the chin with a wayward basketball ( ‘Payback time,’ he yelled as she slumped to the ground to fits of laughter from her colleagues) but walks the entire length of a corridor pushing a zimmer frame along. Rather than have his usual hour long kip afterwards, we head for the playroom and another major Quidditch tournament. In the middle of a particularly vital match a phone call from work coincides with his speech therapist turning up unannounced, a hastily arranged heart echo appointment and a large poo and wee of biblical proportions. After the world’s fastest nappy change we head off to cardiology. Despite being in a hurry, Josh still manages to take a swipe at the nearest gluteus maximus that presents itself to him as I wheel him down the corridor. No nurse is safe. The phantom bottom smacker is back ! The echo appears to show a slight reduction in the amount of fluid around his heart which is good news. Back on the ward I have to keep him awake until his teacher arrives which is no easy task after such a busy morning. Once she whips out her iPad he perks up and I head off to eat as it’s been some time since I did. The ward round still hasn’t happened, so I corner one of the doctors in the corridor instead and ask for a snapshot of what’s happening. It’s all good, with no renal issues as far as they can tell. After shoveling down a prawn curry I head off to our Sick Children’s Trust house to pick up the keys. It would appear that we nearly missed out on a room as they were full up until yesterday. The room itself is right at the top of the house, but it’s simple and clean and everything it needs to be. There’s a double bed, which either Claire or I will be sharing with Joseph, a built-in wardrobe and a wash basin cunningly disguised as another wardrobe. Wi-fi access is available at £5 a week so I can work from there and update the blog as and when. After checking the front door keys work ( I don’t want to risk losing anything precious on a spike again...) it’s time to head back to GOSH, where I fully expect to find Josh in the land of nod. Far from it. As I walk through the door he launches a model aeroplane he’s just built at my head and looks sorely disappointed when it whizzes past my right earlobe and glides harmlessly to the floor. He’s had a cracking time with the play specialist and a student nurse and is itching for more fun. We fool around for ten minutes or so, after which he suddenly becomes zonked and pleads to go to sleep. I grant him an hour long nap which turns into 90 minutes. When I wake him, he’s still exhausted but manages to sit up and gulp down a few mouthfuls of chicken before a short session with the OT. Just as he gets comfortable again and starts to nod off, we realise his Hickman line dressing change is overdue and, after a sleepy, half-hearted protest, he eventually consents to let the nurse do it. And so another busy and hugely satisfying day draws to a close. I suspect the next few days will be difficult as we all try and get used to our new surroundings and a new routine. All being together again is what we’ve been dreaming about for nearly 4 months, but the reality is we won’t get to spend that much time with each other and it will be hard work. Only one of us will be joining Joseph on his excursions around London, only one of us will be sleeping with him at the house. Hopefully Josh will get to spend at least a couple of hours every day with his brother on the ward and that will be priceless. If we can get Josh to the house in the afternoon, even better. It’s not quite the reunion we wanted but, like everything else that’s happening at the moment, it’s a step in the right direction and we’ll gladly settle for that.
Saturday 23rd October
The Chilean miners are yesterday's news, it’s the Wayne Rooney saga that’s been dominating the headlines over the last few days and Josh has been following it with some trepidation. After being close to tears when he first heard Shrek was leaving Old Trafford, Josh has slowly got used to the idea. This is in no small part down to me convincing him that Rooney’s a spent force since his injury and how they’ll be much better off without him - blah, blah, blah-de-blah. So, just as we’re making some real progress what do I read in today’s paper ? The great big scouse lummox has only gone and done a complete u-turn and signed a new 5 year deal to stay at the club. It defies belief ! Given that my weekly wage is substantially less than Wayne’s, I take advantage of Joshua’s long lie-in this morning to make inroads into two or three projects that are still going on. Josh is so tired he doesn’t even stir when my big sister from ‘Oop North’ arrives, although this works out well as it gives us the chance to catch up on family news and gossip. When he does wake he’s in a mischievous mood and we all have a good old giggle for the next hour or so before Claire, Joseph and cousin Michele arrive. This is a cue for the boys to disappear to the playroom and have a Quidditch marathon on the nintendo. Every match is a tightly contested affair and it’s difficult to say who the overall winner was. They both soak up the rapturous applause. After that we wrap Josh up, wheel him off the ward and out into the big wide world again for the first time in nearly 4 months. It’s a bright, but slightly chilly afternoon, pretty much as the weathermen predicted. Actually, strike that as I’m not sure there are any weathermen out there anymore – only weather girls. After about 5 minutes Joseph starts feeling ill and I have to carry him everywhere. Soon after, Josh suddenly starts crying because he’s starving. Short of options, Claire nips to Boots to buy Neurofen for Joseph who perks up enough to eat all the chorizo in my chorizo sandwich. She then rushes round Waitrose to buy rice pasta, mince and tomatoes for Josh’s bolognaise. We head for the house and once we’ve managed to maneuver the wheelchair up the main steps, I transfer Josh onto the sofa where he promptly curls up and lets out a long, deep, satisfied sigh. It’s wonderful to see him and Joseph sitting together watching TV and Josh makes a real effort to eat his pasta. There’s a shop just over the road where I stock up on everything else for the next few days before lifting Josh back into his chair and heading back to Hotel Hospital. He’s desperate for bed by then and snuggles down straight away. Back at the house, Joseph and I climb the 51 stairs up to our room only for him to ask for an orange squash which means making my way down 68 steps to the kitchen and 68 back up again. Alfred Hitchcock’s 39 steps has nothing on this place. Back up in the room, apart from being short of oxygen due to the altitude as much as the exertion, everything appears to be fine. We both climb into bed, even though it’s only just gone 7pm, and Joseph is asleep within minutes of having a story. I try to work lying beside him, but the room is stiflingly hot even with a fan on and my eyelids are soon so heavy it would take a fork-lift truck to move them. Joseph feels hot next to me in bed even though he’s only wearing pants and I give him another dose of Nurofen when he wakes up. If he has a temperature in the morning , we’ll have no real option but to abandon the house and take him back home. Here’s hoping it doesn’t come to that…
