Saturday was as tough a day as I can remember in hospital for a long time. Not for health reasons, thankfully, but for sheer boredom. Basically, Josh isn’t allowed out of his room. He wasn’t swabbed on Wednesday when he entered the ward which was a huge oversight. Even if they hadn’t know about the Norovirus outbreak at our local, a patient should always be swabbed on entering a ward and it’s fundamental on a BMT ward where most of the patients have no immune system. As a result he has to remain in the room at all times until we get the results of a swab taken on Friday. There is nothing to do here. The ward is closing next Friday and all patients are cramming into Robin ward next door for a few weeks. There are no play specialists or teachers at the weekend, so no respite for parents at all. The TV in our room doesn’t work. Almost every game in the playroom is broken. The jigsaws are all too big to do on the table in the room. DVDs and Playstation games are locked away and nobody has a key at weekends. Most of the books have disappeared. Even the pens and pencils in the playroom have been locked up. On the plus side, not having a TV meant Josh didn’t have to suffer through 90 minutes of watching my injury-hit Everton side hammer his beloved Man United. I just about manage not to look smug. We don’t prepare Josh’s meds here at Great Ormond street which is good because it means we get more sleep, but not so good in that we lose track of what he’s on and when. The systems they operate here on the ward are somewhat bizarre – not just to us, but the nurses too. He’s on several new drugs here, but all the times of his old drugs have changed for no apparent reason. He now has two almost identical drugs for hypertension at exactly the same time instead of 12 hours apart. Whilst this is potentially detrimental, it can’t be changed because the computer is impossible to override. The best the nurses can offer is to give the drugs an hour apart. It’s nonsense and everyone knows it, but there’s little else we can do. Overall Josh was fine today but he became more difficult and agitated as the day wore on and just wanted to sleep because there was little else to do. You can’t blame him. I just about managed to keep him awake by rushing out and buying a few things to keep us both occupied until bedtime. I call Claire to let her know she’ll need to bring a suitcase full of entertainment along tomorrow if she values her sanity.
We both had a lie-in on Sunday. I was up around 8.30am. Josh didn’t stir until 11am. The records show Josh was on oxygen last night but this comes as news to both of us. I guess we just slept through it. Whilst his health has been good since we came home on Christmas Eve, we’ve still spent 21 nights in hospital so far this year. Not a great record. When I worked at DDB, they had a special clause in their BUPA policy that meant we were paid £100 for every night Josh was in an NHS hospital up to 32 nights. We were almost happy to be here ! Our policy now only pays out only £20, so we’d sooner be home as soon as possible. The day goes reasonably quickly. By the time Josh has done his breathing exercises, turned his nose up at the inedible and completely unrecognizable food that is masquerading as lunch and we’ve read a few battered old books, Claire arrives with Joseph and a TV aerial in the hope she can watch Dancing on Ice with Josh. Joseph is on good form but has been a little difficult at home – no doubt finding the last few weeks just as confusing as the rest of us. The grumpy Indian guy who delivers Josh’s meals to the room shuts Joseph’s fingers in the door. After half an hour of being together again, most of it spent trying to update Claire on events whilst Joseph is crying and nursing his sore fingers, we head home. Joseph and I catch a bus on Southampton Row and make our train with minutes to spare. He is a complete natterbox throughout the journey and we’re both happy and exhausted by the time we arrive home. A quick bath and a bed time story and we’re both nodding off cuddling up in bed. I wake up half an hour later intending to tidy up but sprawl out in front of the TV instead and try to make sense of the latest episode of Lost.
Monday is a doddle. Once Joseph’s in school, I’m back at the house waiting for a copy brief for work that should have arrived on Friday. When it does come through I have less than hour to finish it and catch my train. It’s pouring with rain as I run down the road towards the station dragging a small wheeled suitcase behind me. I call Claire to let her know I’ve made it and am on the way. When I arrive, she’s holding court in the room with several doctors discussing Josh. Claire is now so knowledgeable about every aspect of his case that she’s often asked whether she is medically trained. I sometimes wonder myself. The conclusion appears to be that he will remain here for a few more days so they can monitor how he responds to having his steroids upped. He is also on a new drug that will help him with any possible reflux action that could be adding to his problems. Claire seems to think it’s called something like Dom Perignon. If it is, I’ll definitely be having some myself. Once she’s gone, the day falls into the old familiar pattern. We do some maths papers for an hour until the new play specialist arrives. She looks uncannily like the hospital chaplain which is very disconcerting as she bounds into the room like Tigger carrying paints and brushes . While she’s with Josh I have a late lunch or was it an even later breakfast ? It’s all a blur. Having brought up two working PS2 controllers and games from home, we then re-enact the Everton v Man Utd match in our room. With Josh managing the team, rather than Sir Alex, they manage to scrape a couple of wins together and he gets his revenge. A nurse arrives with the anti-biotic Josh is allergic to again but without any Piriton. Josh is quick to tell her to read his notes and sends her packing. Like Claire, he’s pretty much a qualified doctor these days. We watch a movie together then natter as he tries to get to sleep and I try to do some work on the laptop. It’s not a good night. His sat levels are low and he keeps bleeping. He’s on a full oxygen mask most of the night and I’m woken at 4pm by a nurse as they wheel in an x-ray machine. My heart always skips a beat when a nurse touches my arm when I’m asleep. My mind always thinks the worst – hardly surprising since they did it in Portugal to tell me Alex was dying. By the time I realize everything is okay I’ve opened too many locked doors in my head to go back to sleep so I start writing this blog to keep me occupied.
