Monday 4th – Sunday 10th July
And so in the same week that The News of the World disappears from our lives, a glorious all-new blog rises up from the ashes like a big, fluffy Phoenix. Basically it’s exactly the same as the old blog, only a little more exclusive. It’s now the Harrods or Harvey Nics of the blog world rather than the Primark. As one regular follower put it 'OOh, I feel like we are all in some secret club now!’ I haven’t introduced any secret handshakes or weird initiation ceremonies yet, but it’s surely only a matter of time. We’ve had to say goodbye to quite a few readers unfortunately, but given that half of Great Ormond Street have been reading it for the last two weeks that’s probably no bad thing. By the end of the week ‘Diary of a Hospital Dad’ had received well over 18,000 page views to date which broke down roughly like this:
United Kingdom 13,795, United States 2,097, Denmark 394, Netherlands 263, Germany 223, Canada 217, Slovenia 117, Australia 112, Singapore 108 Russia 83.
It reads like the Eurovision Song Contest scoreboard and I keep expecting Terry Wogan’s dulcet tones to announce that Finland and Lithuania have nil points. Other countries following Josh’s progress that didn't make the Top 10 include Austria, France, India, Indonesia, Kenya, Moldova, South Korea, Ukraine and Pakistan. Not sure we know anyone in those countries, with the exception of France, but Pakistan is a little worrying. Maybe Osama Bin Laden was busy catching up on Josh’s news even as Special Forces approached...
So what’s been happening here at GOSH since the birthday boy celebrated his 12th year ? Well, the week began well enough from both my point of view and Josh’s. With more consecutive days at home than I’ve had in months, I managed to get plenty done. Monday and Tuesday were warm and sunny and I spent much of the time pottering in the garden. I finally managed to empty the boys’ old sandpit out and store it away, although not before the weather suddenly turned windy and I was left feeling like Lawrence of Arabia. I cycled to Tesco, which was wasn’t a great idea as I grossly overestimated the size of the basket on the bike and had great difficulty cramming everything into it. I even had time to explore the 400 acres of hidden woodland and countryside that stretch between Petts Wood and Chislehurst, something I haven’t done in years. Joseph finally received his new Taekwondo outfit , although he might be moving to another school soon which would make it redundant, and our Chinese takeaways after his lessons have now become a regular occurrence - with crispy duck pancakes joining seaweed, butterfly prawns and crab claw high on his list of faves. Joseph discovered Claire’s Shiatsu chair and sat in it for 5 minutes on Tuesday, telling me that his back massage felt remarkably similar to the sensation of Wolverine punching his seat back in the 4D cinema experience at Madam Tussauds. Hopefully without the claws.
Meanwhile Josh has been on a roll at GOSH. He was up playing and doing stickers long after Joseph and I left on Sunday evening and didn’t climb back into bed until after 10pm. He told Claire he’d had the best birthday ever and then slept through until 9am - his best night on record as far as I’m aware. His feed is running steadily at 80ml an hour over 20 hours and vomiting has been at a minimum all week. His headaches have been far less frequent too. He’s waking around 11am most days but appears much sharper neurologically and is staying up for a good 10 hours or so every day. That said, his skin isn’t great and he has had trouble settling in the evening due to itchiness. The BMT doctors have overruled the dermatologist, even though they admit there’s something else going on. We might have to force them to sit in a room together and pool their knowledge if his skin doesn’t improve over the next week or so. Claire had a couple of nights when Josh didn’t fall asleep until gone 5am but the introduction of a new antihistamine drug that can be given regularly alongside the two he’s already on has helped settle him. Gym’s been going well and Josh is performing better than he has in a long time. Whilst all his physiotherapists have been fantastic, he now has a guy working with him for the first time and it changes the dynamics, which is good. He enjoyed a couple of long chats with Joseph on the phone this week and they were both reduced to fits of giggles by the end of the conversation. It’s a joy to see and hear them like interacting like that and another sign of Josh’s continued improvement.
Thursday sees me return to GOSH straight after a work meeting at the Hospital Club. What is it with me and hospitals ? It’s our one year anniversary at Great Ormond Street today, and whilst we didn’t celebrate it with chocolates, cards or flowers, we never stop celebrating the fact Josh is still with us and as happy as anyone could be under the circumstances. He asked Claire on Wednesday how he got here as it’s still fuzzy for him. She told him again about his fall, his coma, his time in PICU and how we had to watch over him all night, holding down his arms so he couldn’t pull out his wires or scratch himself until he bled. He tells her how happy he is that he lived and they shared a few tears together. Like Harry Potter, Josh is truly ‘The boy who lived’ and is every bit as brave and courageous as JK Rowling’s hero.
Friday’s ward round brings news from Italy. The cells are growing well and we should be heading out there towards the end of the month. Josh is starting to warm to the idea and looking forward to flying out on a private plane, like some global superstar. Even more exciting is the prospect of seeing Joseph every day. There’s no mention of the blog by any of the doctors or nurses, but I’ve noticed from the stats that someone, somewhere is slowly working through the back catalogue of posts. More likely than not, it’s someone from here – unless the Americans lied about Bin Laden and he’s still alive. Josh’s renaissance continues and he’s up for most of the day until past 10pm and remains headache and vomit free. We ventured out for some fresh air and checked out what games he could buy with his birthday money to play over in Italy. The play specialist managed to bag a couple of tickets to see the new Harry Potter movie next Friday. She’s checked with the doctors and they say it’s okay. It’s lauded as a premiere, but the reality is it’s just a showing a couple of days before it opens nationwide. It’s fantastic she’s done this, but it’s at the O2 cinema and I’m a little concerned about how Josh will cope with what could well be a 2 hour return journey in a taxi. As far as she knows they’re normal seats, so he may well not be able to sit in his wheelchair or even be near the aisle in case of toilet problems. The fact the doctors have said yes, means I can always take him to a regular matinee in London instead which means a 15 minute walk and a guaranteed disabled seat. The cinemas in London would be less crowded too during school time, so I’ll have to give the whole thing a great deal of thought over the weekend. If only there was a spell that could magically transport him straight to the 02. Londonium transporticus certainly isn’t it...
The weekend looked like continuing in much the same vein as the week with Josh waking around midday and on good form. Shortly after sitting in his wheelchair though, any semblance of routine was shattered with Josh’s three day vomit-free spell ending in spectacular fashion with a sudden and unexpectedly violent explosion of sick. Both he and his wheelchair were left drenched in a bizarre, foul smelling liquid that contained hundreds of unidentifiable purple splodges. I cleaned Josh up first before committing the unforgivable error of putting alco-gel on his hands to make sure they were germ-free, little realising he had a small cut on his left hand. He screamed blue murder, and having unwittingly done it to myself on more than one occasion, I can’t blame him. With him back in bed I began clearing up and took a sample of the strange solution to show the doctor, who was as baffled as I was. Josh hasn’t eaten in 36 hours and none of his drugs even vaguely resemble what came up. Josh is fine afterwards but goes back to bed for a couple of hours, after which we finish Lego Pirates of The Caribbean on PS3 and unlock a hidden bonus level which replicates the Disney ride, but without the queues. Sunday sees Joseph and Claire up here in the afternoon as per normal. Josh has been desperate to play a new Superhero Squad game with his brother and wastes no time doing just that. An hour later, a couple of our friends arrive and Josh enjoys even more attention and presents. They kindly stand outside with Claire when Josh needs the toilet. While he’s getting down to business on the commode, he asks Joseph for a hug as he’s in pain. Joseph duly obliges as Josh nosily passes diarrhoea. ‘ I wouldn’t be doing this if you weren’t my brother,’ he tells Josh. Blood is indeed thicker than water –or anything else for that matter. After a couple of raucous games of Pictureka, Josh starts to tire and needs to sleep, so we all head off home.
All in all it's been a good week with Josh far more stable than usual. It might be our imagination, but Claire and I have found everyone at the hospital even more helpful and accommodating than usual since Sunday’s blog went online. Whether they read it and were moved by the words I’d written or whether the whole thing was all just a storm in a urine bottle and has blown over is anybody’s guess, but I feel far more comfortable here than I thought I would this week and it’s been a real bonus.
