Friday 14th January
Once Joseph’s at school and I’ve had a quick session at the gym, I head for Bluewater to treat myself to a movie. It’s only 11am but there’s short queue outside the cinema already - mostly pensioners waiting to see Colin Firth in The K…K…K…King’s Speech. That’s one Claire will want to see one day too, so I opt for The Green Hornet instead. It’s a strange hit-and-miss film that’s never sure what it wants to be but just about works as a comedy with explosions. It’s in 3D and before long I find myself experimenting with my glasses to work out exactly what Josh would see if he was here. With both eyes open and no glasses everything’s blurred, but with the glasses on and one eye shut the picture comes back into focus. This is great news as it means Josh won’t have to wait for all the big blockbuster movies to come out on DVD, he can enjoy them on the big screen. Given that his whole life is showing in 2D now, I’m sure he won’t be too disappointed. Two messages from Claire arrive while I’m watching the film. Josh is struggling far more today and the doctors can hear a few crackles from his lungs. He’s also having an MRI which they’re doing without anesthetic this time as he thinks he’ll sleep through the noise of the machine. I try to call Claire but there’s no answer, so I grab a bite to eat then head back to Bromley. As soon as I hit the A2 I feel my phone vibrating in my pocket and pull over. It’s not Claire, it’s a text informing me that I could be due £3,750 for my recent accident. This seems like a large sum of money for the paper cut I got playing cards with Josh a few days ago, so I assume it’s a scam. I’m asked to text YES to find out more or STOP to stop the texts. I just delete the message as it’s the only way I can be sure it won’t cost me anything. Joseph bounces out of school as usual. He took his scorpion in for Show and Tell today and was very happy that everyone held it and passed it round. We’re home briefly to play before he’s off to Taekwondo. After dinner I read him a couple of Horrid Henry stories in bed and he falls asleep just before Claire calls. The most distressing news of the day is that she dropped the plug and charger for our portable DVD and it’s buggered. It’s just one of those things but, like each and every one of us, she’s keen to shift the blame. In this case it’s a combination of the plug’s fault for being a strange shape and the hospital’s for having power points in such hard to reach places. Luckily the PS3 is wired up to the TV so they can still watch this week’s ‘Got to Dance’ on DVD together. Josh has been feeling well and has slept most of the day. He was very patient during his MRI, even though he was kept waiting because nobody told the technicians he had norovirus. Strictly speaking he should have been last on the list as they would have had to deep clean the room if he was sick. Luckily he wasn’t, although he did vomit an hour earlier. Josh had a good old cry with Claire about eating today. The desire is there but he just can’t seem to swallow anything and it’s beginning to get to him. She gave him a big hug and he’s perked up since in every way, so hopefully today was just a small blip. Here’s hoping…
Saturday 15th January
It takes just over an hour for Joseph and I to drive into London despite a snarl up on the New Kent Road. Josh is having a much better day than yesterday and he and Joseph sit and play Little Big Planet on Playstation and then Power Rangers for the short time they have together. Josh is in his wheelchair with his legs elevated to try and prevent the swelling that occurred yesterday. We fit lunch in between games and Claire manages to feed Josh the tiniest of chicken scraps which he manages to chew and swallow. He’s much more on the ball today and does far better than Joseph at the games they’re playing. The fact this comes as a shock to Joseph says a lot about what his expectations of Josh are these days. The fact he’s happy and excited to be beaten by his brother says even more about Joseph and the loving relationship they’ve have. Josh and I fool around for a while on the iPad after they’ve left and he has a bath around 6pm. He was off like a shot down the corridor when I mentioned it and getting him in and out of the water took far less effort than usual. I’ve included a photo of the contraption we’ve been using to do this for the last few months as it’s difficult to describe. Basically Josh sits on the top shelf then slowly lowers himself down onto the second and then finally into the bath. Once dry and creamed up, he munches his way through a packet of crisps while he watches ‘Cats and Dogs’. It’s good to see him eating again and hopefully the salt will make him want to drink more. Unfortunately we can’t both listen to the movie at the same time as our double headphone adaptor doesn’t fit the socket on the TV we’re using in the absence of our portable DVD. It’s a shame but it gives me a chance to write up the blog and tidy up the room. His blood pressure is high this evening and his pulse is low, but he seems well and bright so nobody’s too concerned. He doesn’t want to sleep after the movie, so we stay up and watch most of Match of the Day. It’s 11.30am before I finally turn the lights out. Claire’s put her new Ikea duvet down on our bed as an undersheet and it’s warm and welcoming when I curl up on it about 30 minutes later.
Sunday 16th January
While Josh sleeps soundly I tiptoe out to buy a Sunday paper. It’s mild and sunny considering it’s only 8am and I return feeling elated for no particular reason. Josh doesn’t wake up until just before midday but makes up for lost time with a quick stroll down the corridor and back. It’s another feast of football today with Everton away to Liverpool and Man United at Tottenham and we settle down a couple of hours later to watch the matches. He has chicken for lunch and manages more than yesterday but feels like salmon around 4pm just as United kick off. Unsure what time Waitrose closes I head towards the Brunswick Centre to find it open and packed. One smelly salmon fillet later I let myself into the Sick Children’s Trust house to cook it. Josh’s favourite nurse was happy to sit in with him while I was out as not only does she love him, but she’s a Man U supporter too. I didn’t miss much while I was out and the match ends in a goalless draw which sees Josh’s team return to the top of the table. Having swapped text messages with an old college friend throughout the Merseyside derby, I feel like a teenager again. Yes, I know mobiles hadn’t been invented back in those days, but you know what I mean. My rejuvenation continues as Josh and I have a real boys evening, playing games and laughing out loud at things that nobody sane could possibly find funny. He manages another trip down the corridor before climbing back into his bed. He’s become addicted to Tap Zoo on the iPad and is slowly building up a menagerie of wild animals that he can collect revenue from. I say slowly because we’re trying to do it without spending any real money. At one point we were just a screen tap away from spending £59.99 on extra land and coins which was scary to say the least. It’s frighteningly easy to rack up huge bills on our phones, laptops and Sky boxes without even noticing and it’s no wonder so many people find themselves in debt. We eventually manage to get more coins free by downloading an aquarium app which also costs nothing. Unfortunately this means Josh now has to spend his spare time feeding fish as well as picking up litter from his zoo. Suddenly it’s nearly 10pm and I settle him down for the night. He’s been on an even keel all weekend and today has probably been the best day I can remember for a long, long time which, considering neither of our football teams won, is no mean feat.
Monday 17th January
Josh has rarely been given his diarretic since we made a point of raising it as a major concern. Being off it won’t help his hearing, but it will hopefully mean it doesn’t get any worse. I’ve said before how so many things can become habitual in hospital and a number of drugs appear to be continually given simply because nobody’s thought to stop them. It’s ironic that the one drug they did stop after giving it some thought left him blind. We all make decisions that prove to have severe consequences then spend days wishing we’d done things differently, but I wonder if doctors think like that ? Do they lie awake at night thinking ‘if only’ or do they just put it down to experience and move on. Hopefully it’s a bit of both, but I guess it depends on the doctor. Josh says he didn’t sleep well, but he certainly slept from what I saw of him during the night and he’s fine in physio. A male nurse arrives from Tadworth around 11am. He’s a Filipino called Bonni, but pronounced Bony as in ‘I got a girl named Bony Moronie.’ Josh finds this hilarious. Bony is quite short and stocky as opposed to ‘ as thin as a stick of macaroni’ as the classic song suggests and will be one of Josh’s key workers at the centre. Our first impression is that he’s lovely, but difficult to understand and extremely softly spoken. He’s keen to meet Josh and has obviously read his notes before coming in, which is both professional and encouraging. Claire drives in today as it’s pouring with rain in Bromley and arrives just before Bonni leaves. They have a good old chin wag while Josh feeds his fish and rakes in the receipts from his virtual zoo. I put Josh’s eye drops in before I leave and arrive home just in time to pick Joseph up. Forest school would appear to have been swamp school today judging by the state of his willies, but he had a great time and is looking forward to a visit from a man next week who’s bringing bird eggs with him. I’m unclear at the moment as to whether they’ll be fried, scrambled, poached or hatched during the lesson, With Joseph’s swimming buddy now in a different class due to football practice, it’s left to me to jump in at the end of the lesson and entertain him. It’s not quite the same but we have a laugh and for once I’m not fully clothed and trying to stay dry when I step into the shower with him afterwards. There’s a fair bit to do at home and I only just manage to dry the duvet cover, sheets and pillows and get them back on the bed before Joseph crawls into it. Claire and Josh had a good day despite me walking off with the keys to the Sick Children’s Trust house in my bag which means Claire couldn’t cook for him today. He’s been eating less than an anorexic sparrow anyway so it’s not the end of the world, although I’m annoyed with myself for not realizing it.
Tuesday 18th January
Didn’t get to sleep until 5am. No real reason. Brain too active I guess. Joseph and I both oversleep although we still make school comfortably. At home I have a floater in the fish pond. One of the small fish has gone belly up, although when I try and remove it with a net he suddenly springs into action and swims off. Within a few minutes he’s struggling again, so I reluctantly put him out of his misery. The day flies past with chores eating up most of my time. It’s a real struggle at the gym compared to a few months ago when I went every day and my back’s suffering at the moment, not helped by a marathon session with Joseph and a couple of lightsabres. There were more nurses from Tadworth at the hospital with Josh today to see his continuing progress. Fingers crossed he’ll be out by the end of the month and our next adventure can begin. He had his swine flu and flu jabs at GOSH without too much fuss which was very brave given he suffers from needle-phobia. Had a listen to Take That’s new album while I was putting it on iTunes for Josh and there’s far too much Robbie in there for my liking. Let’s hope he’s not back for good…
Wednesday 19th January
Another bad night’s sleep for no apparent reason, although having Joseph’s feet in my face probably didn’t help. Apart from Tadworth calling to confirm that we can stay in the family flat during Josh’s first week of admission, nothing happened at home today that’s worth mentioning. Josh had a good day overall, although he had a new Hickman line put in as his old one failed to remedy itself. For the uninitiated, a Hickman is a tube used for taking bloods and administering medicines intravenously. It’s inserted under general anesthetic through an incision in the jugular vein. One end of the tube is pushed through the vein until it exits the chest through another incision, the other rests inside the heart. It’s Josh’s third Hickman, although he’s had several PICC lines too which are thinner tubes inserted into the vein of your arm that run up around your shoulder and then down to the heart. He was very brave about the whole thing, although he woke up in pain and with a little discomfort. Hopefully this one will last longer than the last. Claire has nothing else to tell me as we’re both tired and will see each other briefly tomorrow to go through the list she’s compiled for Tadworth. There are a lot of questions to ask. Let’s hope we get a few good answers back.
