Saturday 12th February
Josh had a good day with no pain at all. Claire tells me he read 3 paperbacks over the course of the day which isn’t bad going, although waking up at 6am probably helped. He had his favourite nurse on duty too and she stayed with him for over an hour while Claire managed to grab some fresh air and food. Joseph and I enjoyed the sunshine with a bike ride across the park to the local shops and a football marathon in the garden on our return. Lying next to Joseph in bed while he nodded off, I consulted Lord Google to find out a little more about cochlear implants – given that they’ve been suggested for Josh. They’re basically small, electronic devices that give profoundly deaf people a sense of sound. Part of the device sits behind the ear, the rest is inserted surgically under the skin. Unlike a hearing aid, which amplifies sounds, Cochlear implants bypass damaged parts of the ear and directly stimulate the auditory nerve. Translating the signal from an implant into recognisable sounds involves a significant amount of time and therapy - I guess you have to completely re-learn how to hear. Any existing hearing is lost as a result of the implant too, which is a little scary to say the least. Surgeons prefer to operate on one ear rather than two, just in case medical advances mean hearing can be restored in the other. Cochlear implants aren’t really something we’d consider until we’ve seen how Josh functions in the real world with hearing aids and he would need to be in far better health to face the operation. Given that won’t be for some time, you’re unlikely to see the word implants in this blog again unless Claire decides she wants a boob job for her birthday...
Sunday 13th February
It’s the Sunday before Valentine’s Day and what better way to spend it than with breakfast in bed with the one you love. Circumstances dictate that it’s Joseph rather than Claire who’s the recipient this year and he settles for a Belgian waffle and a glass of chocolate milk rather than pink champagne and smoked salmon with scrambled eggs. With Joseph seemingly over his diarrhoea and showing no symptoms of anything other than his usual madness, we set off for GOSH just after 11am. Joseph does his usual trick of heading straight for the toilet on arrival while I find Josh looking happy and alert even though he’s only just woken up. After the boys have played for a couple of hours, we all climb into the car and head for St Paul’s to check out the new shopping centre there. It’s a fantastic location with an amazing view, but the shops are a bit pretentious and there aren’t many opportunities for Josh to spend his Christmas money. There’s a tiny Foyles there though and he comes back with a Mr Gum novel and a wonderful Kings and Queens of England sticker book. As soon as Claire and Joseph leave, we watch yesterday’s football. I’d avoided all the results and am almost as excited as he is when Rooney wins the game against Man City with a wonder goal. Josh’s dinner arrives soon after but he takes one look at it and asks for salmon instead, so I need to head for the house and get my pinny on. It was starting to spit when we were out earlier but there’s a real downpour now and I’m tempted to hand the keys to the salmon and let it swim round there on its own - there’s a bit of a hill, but I’ve seen them fling themselves up waterfalls on the Discovery channel. There’s a couple in the kitchen from Norwich who’ve been down here a week as their daughter developed meningitis. All’s gone well and they hope to be home next week. It’s becoming increasingly hard to relate to other families with sick children as no matter how hard I try to make our story sound positive, we’ve been in and out of hospitals for over 3 years and are no closer to having Josh either home or better.I try and keep switching the subject back to their own situation and it seems to work in the end. Josh has just finished reading about Mr Gum and his Goblins by the time I return and eats more salmon than I thought he would. He starts on his sticker book which covers everything from the Plantagenets to the Windsors. Disappointingly there’s no Will and Kate tea towel sticker and no mention whatsoever of The Other Boyleyn Girl - not even a picture of Natalie Portman or Scarlet Johannson. Josh has been awake over 12 hours now and showing no sign of tiring, even though I’m exhausted. We watch an old X Factor DVD that I found down Leather Lane market for 50p and have a laugh at the worst auditions. He’s pretty much zonked after that and falls asleep quickly. I’m so envious of people who can do that. When Claire was younger she actually managed to fall asleep standing up on the train. It feels like a long time ago. She now has just as much trouble as I do and usually ends up ironing until well past midnight.
Monday 14th February
And so Valentine’s Day arrives, with Cupid’s arrows having to somehow thread their way through New Cross and down the Old Kent Road without the aid of a sat nav. It’s never been a particularly big thing for me or Claire, although we always swap cards and chocolates. There was a huge bar of swiss chocolate waiting in the wardrobe when I arrived at the hospital yesterday with express orders not to be eaten until today. I’d love to pretend I honoured that request, but with nothing else around to eat yesterday evening I just couldn’t resist. There’s still some left as I write, but it’ll be long gone before Claire and I swap over on Wednesday. Josh wakes early - around 8.30am - which is unheard of these days. Whilst it’s great to see him raring to go, it does make for a very long day. We manage to amuse ourselves and each other for most of the morning until our physio pops her head round the door to see if we can switch the afternoon session to the morning. It’s fine by us and while Josh is running on the spot, I run off on a couple of errands - one of which is printing off 3 months worth of photos at Jessops. After Alex died, photographs became so important to us because it was all we had left and I still print out our best snaps every few months and put them in albums, as digital images just sit around in cameras, laptops and phones, queuing up to be deleted or lost forever. Annoyingly, I discover there are 99 images on my USB. One more will knock £4 off the price, so it’s back to Gosh to add another. Josh has a Valentine Card which he’s quite excited about, but I still have my work cut out trying to keep him awake until his teacher arrives. In the end I climb into bed with him and read a charming short novel by Michael Murpurgo called ‘The Dancing Bear’ which trundles along nicely then ends so abruptly and sadly that Josh and I are left in a state of shock. I have orders to track down the DVD of ‘Diary of a Wimpy Kid’ today and head for HMV at Piccadilly Circus (via Jessops ). Mission accomplished, I then have to trek back across town to the house on Grays Inn Road to poach another small salmon fillet for Josh’s lunch. There’s nobody there to make conversation with today which is a relief. I dash back to find his occupational therapist helping him to make a Valentine Card for his favourite nurse. All my rushing around today has left me with two distinctive sweat patches under my arms and I disappear behind my curtain to change my shirt. Shades of Julia Roberts - or were hers just hairy ? We have a flying visit from our gastro consultant shortly after which is interesting. He’s far more realistic about what’s going on than BMT and says that Josh remains a mystery. Whilst they’ve changed his lipids, he feels it’s highly unlikely they’re the cause of his pancreatitis. This supports Claire’s findings and directly contradicts what she was told by the BMT doctor on Friday. The sun is still shining, just about, when Josh comes off his TPN for a couple of hours and we venture out in his wheelchair to Gamesland. There are plenty of new games on sale, but Josh opts for a couple of pre-owned PS2 games of James Bond and Pirates of the Caribbean, which we play together when we return. No bath today as Josh’s skin is looking good and he want to watch his new movie before bedtime. He has a good chuckle and I call Claire to catch up once he’s asleep. We don’t get to speak as her phone’s engaged. I wonder who it’s going to marry ?
Tuesday 15th February
The Russian cosmonauts set foot on Mars today after 270 days in space. Only they aren’t really in space, it’s not really Mars and I haven’t got a clue why they’re doing this simulation other than to show people they can all live together in a cramped space for a long time without going insane. They should have just asked us.They still have to ‘fly’ back to earth which will take a further 250 days and if any of them are going to go loopy loo, I suspect it will be then. Even though I’m familiar with spending long periods in isolation with no real goal in sight, I think I’d go mad on the way back. No real sense of achievement, no cavalcade or tickertape welcome, they might just as well have been on Big Brother. Meanwhile, back on earth it’s day 227 ( I think ) of our own personal ‘journey’ and Josh and I have a quiet, uneventful day. It starts in confusion with one of the nurses telling me Tadworth people are coming up today, but nobody can confirm when or why. Josh enjoys a lie-in after his early start yesterday. While he works on putting together a Powerpoint presentation based on the Guinness Book of Records with his teacher, I manage a quick Chinese and pick up our photos from Jessops. Ward round doesn’t happen until late afternoon and I try to get to the bottom of the Tadworth mystery and what’s happening with Josh’s TPN. Tadworth are coming on Thursday at 1.30pm apparently, but I still don’t know why. There’s a meeting tomorrow to discuss starting him on feed, but casually thrown away in the same sentence is a mention of removing Josh’s gall bladder. Whoa, hold on a minute ! Where the hell did that come from ? It’s only mentioned as a possible option, and gastro think it’s a terrible idea, but BMT have seriously been considering it. I’m almost speechless as there’s no medical evidence to suggest there’s anything wrong with his gall bladder whatsoever. Other than that little bombshell, everything’s pretty good and Josh appears stable. After exploring the Caribbean with Johnny Depp, Orlando Bloom and a somewhat surgically enhanced digital version of Kiera Knightly on Playstation, Josh has a quick bath and is in bed by 6.30pm. We watch the England v Denmark match on DVD and have a short sing-a-long session to JLS after that and then he’s asleep. The rest of my evening is spent on the laptop wishing I’d saved a few chunks of my Valentine bar of love...
Wednesday 16th February
Josh is definitely starting to need the toilet more and keeps talking about tummy pains. Nobody appears too concerned at the moment, as there’s not much we can do anyway. He’s up at a reasonable hour again and we get to enjoy a good chunk of the morning before Claire arrives and I scarper. Joseph’s at a friend’s house which means I have all afternoon at home. The time still flies and after I’ve picked him up and had a couple of light sabre fights it’s nearly 8pm. Josh has had a good day too, but complained of feeling unwell in the afternoon and slept for a couple of hours. When I speak to Claire, he’s just settling down for the night having conked out after watching just a few minutes of Arsenal’s Champion’s League game against Barcelona. And there was me thinking both teams played exciting, entertaining football...
Thursday 17th February
Not the restful night or day that I’d planned. The DVD recorder John Lewis loaned me packed up while I was recording the Champions League for Josh and I was up half the night trying to fix it. I’m pretty sure it’s something serious, as it won’t recognise any DVDs now, not even pre-recorded ones. This means I’ve got no choice other than drive to Bluewater in the morning and pick up another one, which is exactly what I do. Unfortunately I’m so keen to not let it eat into my only full day at home, that I go straight from school and arrive 45 minutes before most of the shops open. Luckily McDonalds is and I phone through some thoughts on a campaign I’m looking at while I stuff my face with a sausage and egg Mcmuffin. Once I’m home and have finished setting up my new, borrowed old recorder, I head to Bromley for a haircut. I mention this only because the barber tried to set my ears on fire. Seriously, he’d just finished trimming my ear hairs with an electric razor - which was bizarre enough in itself - when he lit up what looked like a small drum stick and started beating me about my ears with the flame. It was a strange mix of pleasure and pain, like something out of a Rihanna video, but apparently it stops slows down their growth. Joseph has his usual tennis lesson in the afternoon and is given another sticker for good volleying. Josh was violently sick last night just a few hours after his elemental milk feed started. The pump was only running at 10ml an hour, so it doesn’t bode well. He’s felt nauseous all day and didn’t eat. He’s also complaining of tummy pains again. A doctor and a nurse came up from Tadworth to discuss his case. They feel it’s absolutely the right place for Josh, but wonder if the timing’s right. He would be their most medically needy patient by some distance and they’re concerned about him becoming ill in their care as they can’t administer a number of his drugs and there are no doctors there after 6pm or at weekends. It’s a difficult call for anyone to make, but I suspect Josh’s health over the next week or so will be the key. Let’s hope he remains steady and we can all move on...
