Tuesday 8th March
The morning post brings further news from the Inland Revenue who are now chasing a payment dating back to 2008, even though their statements and mine confirm it was paid 2 weeks before it was even due. It’s an unwelcome diversion as I try to pack for another three nights at GOSH. Claire’s parents are lending us their portable DVD while ours goes in for repair and I pick it up from their house, along with Claire’s sister, and we head off to the big smoke together in the car. It makes a pleasant change having someone to talk to other than Joseph and the journey’s over in the blink of an eye. Josh sleeps through our arrival, stirring only for sips of water or to empty his bladder as we enjoy a mini-picnic sitting on the bed with sunshine pouring in through the window. Gastro are first to gatecrash our quiet interlude with a quick summary of what they’re up to and what they think the cause of Josh’s pancreatitis might be. The BMT ward round follows shortly afterwards, during which they offer up their theories and debunk everything we’d just heard. Only time will tell who’s right. In the meantime, the BMT team put to rest our concerns about Josh going on to Ganciclovir instead of Aciclovir, even though we remain unconvinced that HHV6 is the root of all evil. Josh needs a scan today, but ultrasound are refusing to come up to the room. Fortunately the top consultant here puts his foot down and they surface a couple of hours later. It’s a far more experienced radiologist than last time which results in a far less painful experience for Josh. Once the gel’s been wiped off, he’s asking to sit in his wheelchair as he doesn’t want everyone to think that all he does is lie in bed all day ! Five minutes later he’s falling asleep at the table and I have to wake him up to help him back to bed. Claire’s mum’s soup is still hot in the flask and warms me as I sit down for the evening after finding a comfortable position for Josh and browse today’s paper. It’s packed with photos of a young Kate Middleton and informs me that she once spent a year in Jordan. This comes as a shock to me as it’s almost as long as Peter Andre managed...
Wednesday 9th March
For the first time, possibly ever, in Great Ormond’s Street’s history there’s a joint ward round today with both Gastro and BMT sharing the limelight. Whilst there’s only one of each and neither are overly senior, it’s still a landmark event. There’s nothing new to discuss other than we should keep Josh off his lipids for a while but an hour later one of the big gastro cheeses rolls up with a plan. He’s one of my favourite consultants as he tells it like it is and is never afraid to belittle medical science as vague at best. They’ve studied all Josh’s previous scans and shown them to UCLH and now believe it’s most likely a gall stones problem. They will do another MRI as soon as possible, this time with a dye injected so they can hopefully see more detail. If his gall bladder needs removing it will be done at UCLH or Kings as they have more expertise. If it reveals nothing new, UCLH will look at a number of other options. The consultant reassures me that removing the gall bladder has no real long term effects other than loose stools and that it won’t affect Josh’s diet, but this is something we’ll check as he does have a tendency to gloss over the small print. A volunteer offers to sit in with Josh for an hour and the extra time out means I can pick and choose where to eat. I head for a noodle bar I like on New Oxford Street only to find it shut down due to ‘ a severe cockroach or mice infestation’ according to the health and safety notice pinned to the door. You’d think they’d know the difference, but maybe they look the same deep fried in chilli oil. Instead I wander the streets looking for somewhere interesting to sit and relax while I eat, but end up grabbing a sandwich instead. To make matters worse, my trip to McDonalds for a Wispa McFlurry proves fruitless as they’ve run out of ice cream. Josh needs eye drops putting in as soon as I’m back and is remarkably cool about being woken up and having it done. He’s asleep again when his teacher comes up. She stumbled across the blog last week while Googling to find Josh’s YouTube video and was up until 2am reading it and was reduced to tears. Her support and kind words make me start to well up. She’s said on many occasions what a special boy Joshie is and I can’t think of anyone here I’d rather read it, but it’s tricky if too many people at GOSH discover it as it could have a considerable affect on so many aspects of his day-to-day care. When we’re home and dry, maybe I’ll send the hospital a link but until then everything is just between you, me and the 500 or so other people who visit us every week. Josh wakes around 3pm and stays awake until the ophthalmologist has given him the all clear for another week before going straight back to sleep. After months of believing she’s Croatian, it turns out she’s Slovakian and is going back there for two weeks. It’s a huge loss as she has turned into a real ally for us over the last few months. She shows genuine affection for Josh now and promises brief her fellow eye doctors on how to get the best out of him. She even gives me permission to tell her boss off if he tries to touch Josh’s eyes rather than just ask him to follow his fingers. The rest of the day continues in the same vein with Josh sleeping most of the time then rallying briefly now and again for a few minutes. He surfaces to watch the second half of the Tottenham game, the majority of it from his commode which is probably more comfortable than all but the most expensive seats at White Hart Lane.
Thursday 10th March
Is it me ? Do I radiate some kind of electro-magnetic force that renders electrical items useless within seconds ? I only ask because the portable DVD player we borrowed isn’t working now and it sounds like the drive has gone. Claire hasn’t taken ours in yet, but quite what we do next I have no idea. There’s nothing specific planned for Josh today, although I’ve managed to coax a volunteer into sitting with him for an hour as I’m catching up with a work colleague over lunch. Unfortunately I’m not the only one who can’t plan afternoons in advance and he has to cancel all his meetings when his son has a nasty fall at school and needs stitches. Unsure whether or not Josh will be awake for his teacher, I stroll back after another lonely lunchtime to find him up and in mid-lesson. He’s zonked after that and sleeps. It’s only when his TPN starts bleeping that I realise his lipids have been running, which is a direct contradiction of what they said in ward round yesterday. When I ask why the answer varies from ‘they must’ve been sent up by accident’ to ‘ the pharmacist overruled the doctors and insisted they were given’. We’ll never know for sure, but I’ve since been told it’s now fine for him to have them. Even though we give the nurses daily weights for Josh, a closer inspection of his TPN bags suggests they’re basing the volume given on a weight dating back to when he was admitted back in July 2010. Why does nobody read notes here ? Josh is completely obsessed with drinking cold water at the moment and consuming gallons. Each time he does, I have to put a bag on his peg to drain off the excess, take it off and then aspirate him to remove the rest. It’s like The Karate Kid’s ‘wax on, wax off’ training sessions and so repetitive it’s mind numbing, He can’t have water for 45 minutes to an hour after oral medications but asks me over and over and over again until he can. He’s even worse over food right now and pleads with me to ask the doctors when he can eat again. No matter how many times I tell him it’ll probably be a while, he asks again, and again, and again. To be fair, he’d probably drop it if one of the doctors could give him a guesstimate, but nobody’s able to do that at the moment. My fear is that BMT will say it’s fine when put on the spot, but Gastro will say weeks, if not months. He stays awake for a fair chunk of the afternoon and I read to him until my voice gets hoarse. It’s gone 7pm before he stretches out to sleep by which time he’s not the only one who’s shattered. One of his liver enzymes shot up overnight, but nobody knows why. They’ll repeat the test in the morning in time before ward round. When I speak to Claire, she’s convinced nobody ever reads Josh’s notes as she spotted this creeping up a week ago and was told it wasn’t a worry. She’s also concerned about whether he’s had his pentamidine or not recently. It’s a drug that prevents a particular type of chest infection that comes from a bug we all have, but children on long term drugs are more prone to. Unless it’s been switched from being inhaled back to an IV drug, he definitely hasn’t had it for some time, even though we were told today he has. Much to my surprise, Josh gets a sudden lease of life while I’m on the phone and sits up for an hour long Pictureka session while guzzling down enough water to flood a small Australian town.
Friday 11th March
What a wonderful night ! Records show that I was up at 3am to help Josh with a wee, but other than that we both slept through until 7.30am which is our best night for at least 8 months. The pain team arrive at 9am to switch off and remove Josh’s Fentanyl as he hasn’t pushed the button for nearly 36 hours. He’s being monitored for symptoms of withdrawal as there’s a theory that was the reason for his neurological blip last week. Claire and I remain sceptical, as do the pain team. The symptoms are all issues that affect Josh under normal circumstances, so it’s impossible to judge. He’s particularly shaky at the moment but that could be down to his ciclosprin switching over to oral which can cause tremors. A gastro doctor is next on the scene and she’s concerned that Josh’s blood results are all over the place. I can explain most of them away. His platelets have dropped and he needs a transfusion which is par for the course. His white cells have dropped significantly, which I’m assuming is down to his switch to ganciclovir. It’s his urea that’s the big mystery as she says it’s particularly high. She gives me the figures for fluids going in and out of his body and they’re completely wrong. Claire and I keep a log of everything that goes in and the fluid intake he’s actually had is almost double what the hospital have recorded. At the same time, the figure for what we’ve aspirated out is only a fraction of what it should be. All of this means it’s impossible for them to calculate accurately the amount of fluids he needs to keep his renal functions in check. It’s a problem we need to keep an eye on and one to raise during ward round. Claire arrives just after 11am, by which time Josh is awake. As soon as we’ve caught up, I’m off. Despite a 15 minute train delay, I’m home in time to visit the gym and walk to school to pick up Joseph. He cycles home patiently beside me as I amble along and we enjoy a fun packed afternoon once we’re back. Josh has been tired again today, although he managed to work his way through a non-verbal reasoning book and watch a little TV. Ward round confirmed that Claire was right and he didn’t have his pentamadine. It’ll be done early next week. The BMT doctors say Josh can eat and he tucks into a few morsels of grated cheddar a few hours later. He vomited immediately afterwards. Whilst it’s unlikely it had anything to do with what he ate, it does make it harder to assess what’s going on. I guess the tiredness and vomiting could be signs of his pancreatitis coming back. Surely not again, already ?
Saturday 12th March
Forget ‘The People’s Supermarket',it’s having a Budgens just round the corner that’s changed our lives. It’s well stocked, reasonably prized and there’s rarely a queue inside. Check your receipts though, as Joseph and I popped in yesterday on the way back from school and were overcharged by £6 for a packet of Doritos. It’s Joseph’s second football session this morning and he’s wearing Josh’s old Man United kit and showing off his new gold boots. He’s not afraid to get stuck in and goes home smiling with so much turf caked around his studs it’s a wonder there’s any left on the pitch. Joseph turns down a visit to Beaverworld for an active day at home and neither of us have any regrets as the afternoon flies by. Joseph watches the Man Utd v Arsenal game to see if he can pick up any playing tips and ends up acting out the goals in front of the TV. It seems like only yesterday that Joshie used to do that... Josh is fine today but trembling more. He managed a bath, finally, but tiredness is creeping back in and he slept during the afternoon and was back in bed when Claire rang at 7pm. The next few days should tell us whether it’s anything to worry about or just the after effects of pain and sedation...
