Tuesday 12th October
It’s wellie day today. Joseph’s class are off on a nature walk in the local Country Park and wellington boots are essential equipment. Claire went with them last time in a rather nice pair of shoes that will never be the same again. Luckily they weren’t Jimmy Choos otherwise we’d have had to sue the school for damages. Joseph and I arrived at the school gates at the normal time only to find there was nobody else there. Just as I was beginning to convince myself that some terrible virus or alien invasion had taken place last night and Joseph and I were the last remaining human beings on earth, other children started arriving with their parents and I managed to breathe a sigh of relief. A frantically packed bag, several work downloads, a lightning fast gym session and a mad dash for the train later and I’m in a far more relaxed state of mind. A phone call just as we enter a tunnel brings a promise of another job next week which I take as it’s only a couple of days and fits our turnaround schedule. It’s a new client, so it’s hard to turn down. Josh is in cracking form when I walk in, although his totally over-the-top reaction to the news that I’m looking after him is designed purely to wind Claire up. Oh yes, he’s in a mischievous mood today, make no mistake. Claire’s busy filling in multiple forms in triplicate concerning his rehabilitation but just about has time to tell me he took several steps at the gym today which is great news. The ward round is all about how miraculous his recovery has been although I’m quick to point out just how bad his hearing loss is. Being hard of hearing is unfortunately never taken all that seriously by anyone. When I used to tell people about my hearing loss, the usual response was for them to pretend to speak but not actually make any sound. This was funny the first time but wore thin by the hundredth. If I’d told them I was blind it’s highly unlikely they’d have stumbled around the room falling over chairs and pretending they were unable to see. I rest my case. The rest of the news is all good. The latest bloods test still show JC in there but it’s harder to find which supports the idea that he’s fighting it big time. The BK virus has disappeared. They are planning to do a lumbar puncture again when he has his line changed under general anesthetic. Let’s hope he doesn’t come back with bruises plan that are bigger than him again. The doctors would also like to start him on solids. I’m unsure why they want to skip elemental feed which is usually the next stage after being on TPN and when I ask the question they appear to be equally unsure, but it’s as good a plan as any so I say go for it. Speaking of plans, my idea of going out for an hour and a half while Josh’s teacher and a play specialist look after him in back-to-back sessions is scuppered when a veritable flood of diarrohea comes streaming out just as I’m about to leave. I still manage an hour once I’ve cleaned up and tuck into a tasty cheese omelette sitting outside in the sun in Russell Square. On my way back I’m spotted by Claire’s nephew, who’s up with his wife and baby for tests. All has gone well which is good to hear. Josh is asleep when I return but I have to wake him soon after for another heart echo. This time it’s done in the room and the news is there’s no noticeable change. We head for the bathroom shortly after that and Josh somehow manages to poo through the sling and into his bath just as I’m about to lower him into it on the hoist. He’s very patient and hangs around, quite literally,for 5 minutes while I drain it, clean it and fill it up again. Back in his room he threatens to go straight to sleep as usual but ends up talking to one of the nurses about Alvin and the Chipmunks 2 and ends up agreeing to watch it. We get about half way through before he tires and asks me to fast forward to the finale as he loves the last song. Looks like I’ll have to watch it on my own to find out what happened in the middle. although it’s not that difficult to guess. As he settles down, I discover that his Hickman line is due to be replaced tomorrow. There’s no need to put a canula in to put him to sleep however which is good news for everyone, trust me. They don’t know what time it will happen, so I request that it’s after 11.30am so it doesn’t clash with a marathon gym session that’s been planned. We shall have to wait and see, but he’s nil by mouth from 5.30am tomorrow morning and will miss his water, so maybe it’s better if it happens sooner rather than later…
Wednesday 13th October
Going to the theatre in London used to mean seeing Britain’s finest thespians treading the boards at the Aldwych or yet another Andrew Lloyd Webber musical with Elaine Page or Michael Ball. These days it’s only operating theatres that spring to mind. We’re the second in today after a relatively quiet, uneventful night. He did vomit a fair amount of blood again around 6am but that too is par for the course these days. We still don’t know why he’s being sick but I think there’s a pattern emerging and maybe we should give his anti-nausea drug an hour earlier as he’s almost always sick just before it arrives. I did allow him a sip of water after that, just enough to wet his lips and take the acidic taste away – just don’t tell the anesthetist. When he wakes again at 8am he’s desperate for a drink and informs the nurses that he’ll be drinking gallons once his line’s been changed. We slide him onto a smaller bed and push him along the various corridors and lifts to make our slot on time. They should put pictures up on hospital ceilings given so many patients spend so much time staring at them. He’s out for an hour or so. It used to be so harrowing watching him lose consciousness as it brought back such vivid memories of watching Alex’s life slip away, but it’s easier now we’ve done it so often. There was a time when we would both be here, come what may, as it was so emotionally draining. Now it’s almost as routine as grocery shopping. Even Josh appears to be relaxed about it these days. I walk round the block a few times, buy some blue tack to decorate his room with posters and get well cards, which are currently taped to a white board above the bed and often attack me in the middle of the night without warning. When Josh comes round his throat is sore from having a small tube shoved down it, otherwise he seems fine. Back on the ward it’s soothed with ice cold water and he settles down. His new Hickman line is on the other side of his body which means they’ve had to make several new incisions in his body and presumably in the heart itself. It’s new position makes it slightly more awkward as it means his IV lines have to stretch across him when he’s flat on his back unless we shift all his equipment around. They didn’t have much luck with the lumbar puncture, although it was always a nice bonus to do it rather than a necessity. I clean him up as best I can without giving him a full bed bath and he soon nods off. He hardly stirs at all during the afternoon other than to ask the nurses why they keep waking him when he’s in such a deep sleep. At one point he asks very politely if they could just try to make a little less noise. I spend the day working next to his bedside. Several of the nurses have been vomiting today and sent home so the interruptions become less and less as they’re so short staffed. A little later, the unthinkable happens. Josh’s new line appears to be blocked. Everybody’s very calm about it at first but you can sense the growing panic. One of the lumins is fine, so he can still have his IVs, but the other won’t bleed back. Why, I have no idea and neither does anyone else. I keep asking if it could have anything to do with the fluid around his heart and am always told not, but given that nobody can tell me what the fluid is or how it got there, I think it’s a valid question. Josh has been particularly brave today and remains a shining example of all that’s good about the human spirit. Which reminds me, I must check how the miners are getting on. At the last count there were 17 out and I think Davina had signed 10 of them up for a lengthy stay in the Big Brother House. Okay, I made that up but it’s only a matter of time, you mark my words…
Thursday 14th October
Woke up with a cricked neck. Hardly surprising as hospital pillows are like sacks of spuds. Josh isn’t keen on doing anything today and having had a needle rammed into his backbone and a tube poked into his heart yesterday, I can’t say I blame him. He had another quiet night until he managed to wee, vomit and flood his bed with diarrohea all at the same time around 8am during the nurses handover. I’ve no idea how he manages to take everything in his stride so easily – a fraction of what he’s been through would wreck a lesser mortal. We didn’t manage a bath yesterday as I didn’t want to risk his back in the sling, but hopefully he’ll be up for one today. I cleaned his wounds up though, all except for the one on his neck where they cut through to his jugular. That reminds me, how do you kill a circus ? Go straight for the juggler. Boom, boom as Sir Basil Brush would say. I’m assuming he’s been knighted but I could be wrong. Hard to believe he’s still on children’s TV. Joseph loves him almost as much as I did. Weird thing is he doesn’t appear to have aged at all. Being a fox, you’d have thought the worry of being hunted alone would be enough to turn you grey. I manage to wake Josh just before physio arrive and we spend 15 minutes looking at old photos on my laptop which he really enjoys. He can still remember his teachers and all his friends from the school photos I have on there, which is a really encouraging sign. There’s a photo of one of England’s rugby league stars in the paper today doing the Auckland SkyJump that I did at the end of a John Lewis film shoot in New Zealand a few years back. Basically you throw yourself off a 192-metre tower and fall at 70mph until a wire slows you down enough to land on your feet at the bottom. The photos are on the left so you can do a side by side comparison. Personally I think I look way cooler, but Josh isn’t convinced. Maybe it’s the brown stain on my pants that lets me down. Josh really doesn’t want to do any exercises today, but the physiotherapists manage to get him sitting up on the edge of the bed for 10 minutes by using finally honed stalling techniques that include telling him he can lie down, but then shaking hands on it and high fiving the deal to prevent him from doing so. Today I join in by rubbing moisturizer into his back and shoulders and giving him lots of huge hugs which are impossible to do properly when he’s horizontal. Exhausted by his efforts, he sleeps until Claire arrives. We’re trying to track down an orthopedic bed for him which is lower and would allow us to slide him off and possibly stand up without us needing the hoist. No luck so far but several nurses are on the case. The biggest hiccup at the moment is his diet. The gastro team and the BMT team are so far refusing to meet up and discuss whether Josh should go onto solids or just an elemental milk feed. Both have risks, so all we want is a decision but we’re caught in the middle at the moment as is the gastro dietician who’s supposedly calling the shots. Back home I get caught up in work and almost forget to pick Joseph up, although they’re slightly late coming out so he doesn’t actually know that. One of Claire’s American nieces is staying with us at the moment and she returns from a day of exploring London on foot at around the same time Joseph is getting ready for bed. He had a lively tennis lesson in the rain this afternoon and is equally exhausted. They both trot off to bed at the same time, although to separate beds obviously. I’m not sharing my little bed buddy with anyone, not even family.
Friday 15th October
It continues to be no news is good news as far as Josh is concerned. We knew progress would be slow but the fact he hasn’t taken any steps backwards is a real plus. A speech therapist will see him on Tuesday and try to teach him lip reading. If he doesn’t take to it after a week or so, they’ll try him with sign language - which of course is no use whatsoever unless the people around you can understand and speak it too, so I guess we’ll all be swotting up on which hand gestures mean what. I’ve learnt a few over the years but none that are suitable to use in front of an 11 year old. Apart from a quick trip to Tesco’s to buy a few essentials and a box of Mars bar ice creams, today is a day of work with no sign of the rest or play the adverts used to promise. Joseph had a circus day at school today and tries to juggle just about everything he can get his hands on when he comes home. Luckily we have a couple of bean bags he can practice with without fear of breakages. I suspect some parents might not have been so lucky. It’s off to Taekwondo at 5pm and by the time we’re back home, so is his cousin and I rustle up one of my famous pasta dishes for us all. Okay, not that famous yet maybe, but get me a place on ‘Masterchef’ and that could all change. Actually, maybe I’d be better on ‘ Can cook, shouldn’t cook’. After dinner, Joseph and Michele burn rubber together on the WII playing Mario Kart while I clear up and start on the ironing. It’s a relatively late night for Joseph and while he slowly drifts off beside me, I finish reading the day’s paper. As you’d expect our good friends the Chilean miners are dominating the headlines. Apparently, their families now believe there is a religious link between the miners’ miraculous survival and the number 33. Not only were there 33 of them stuck down the shaft but Jesus was 33 when he died, drilling took 33 days and the drive to hospital took 33 minutes. It’s an interesting theory and one I totally support as Josh went into hospital just after his 11th birthday which multiplied by 3 is 33, the most times I’ve had to change him in a day is 33, our train journey into Victoria is usually 33 minutes and this is the 33rd time I’ve nearly nodded off at the keyboard typing my blog. The Lord certainly does move in mysterious ways
