Saturday 4th September
It’s curtains for me today. Claire wants to start spring cleaning even though it’s nearly Autumn and it makes more sense for me to be up a ladder taking down our 12 foot long net curtains to wash than it does her. The seasons feel like they’ve changed and there’s been a definite chill in the air even when the sun’s been out lately. Leaves are starting to fall and we’re digging in for a prolonged hospital stay. Joseph and I are up early and take a stroll up to a Music Club open day where he’s planning on playing every musical instrument known to man. Unfortunately he’s not deaf like Beethoven and finds the noise so loud that he wants to leave the moment we arrive. I manage to persuade him to do a quick tour of all the rooms, some of which are much quieter than others, but he’s having none of it and what would have been a fantastic morning is over before it even began. We walk back through the country park opposite, but Joseph’s not keen on treading on pine needles in his crocs and steps in a big pile of doggy poo trying to avoid them. It’s looking like one of those days, but an afternoon spent playing together in the garden and acting out Deadly 60 with his old zoo animals makes us both far happier. Short of anything to eat in the house come dinner time, Joseph asks for seaweed and prawn crackers to my surprise and delight and we both tuck into a Chinese takeaway before bed. Claire and Josh have had a settled day although he’s started vomiting for some reason and there’s been old blood coming up, He’s shaken his head to say ‘No’ a few times but other than that there’s been no real change. His face is still puffy and his breathing’s not great but he’s had both eyes open for long periods without screaming which is encouraging. Faced with finishing off my tax return or cleaning the windows and woodwork in the front room I opt for the latter. I’ve got another month to do my return and chances are I’ll be one of the millions of tax payers due a rebate thanks to the previous government’s incompetence. I’m lucky like that, aren’t I ?
Sunday 5th September
The day begins with me trying to iron 4 x 12 foot long net curtains on a 3 foot ironing board while Joseph watches Deadly 60. Today’s programme is all about wildlife in Brazil which I’m highly qualified on already given my drinking exploits last week. It appears that not only is Brazil home of the World’s most lethal cocktail, but the World’s deadliest spider lives there too. That’s not, however, what the presenter’s searching for today. He’s after something he describes as ‘like a giant hairy beaver’. Surely Brazil is the last place you’d go to find that ? But no, he’s on the trail of a giant anteater - a bizarre looking creature with a ridiculously long tongue that can eat 30,000 termites a day. Joseph looks suitably impressed until I point out that’s how many Lion bars he’d get through if I left him unchecked. There are no trains to Victoria today, so I’m re-routed to Blackfriars and decide to walk along the Embankment for a change. This would have been a good idea if it hadn’t been for the Mayor of London’s ‘Sky Ride’ and thousands upon thousands of cyclists descending on the Capital. It’s a magnificent sight but a little disappointing not to see them flying around. Sky TV are the sponsors - hence the name. Thank goodness it wasn’t Virgin media. Josh is awake but unresponsive when I arrive and Claire and I take advantage of an overstaffed hospital for a change and slip out for a quick drink. We sip a couple of lager and limes outside the pub where we first met 23 years ago. Unlike me, it doesn’t look too different on the outside but has been done up inside and boasts an excellent Tapas menu for future reference. Back on the ward Josh remains a little unsettled throughout the afternoon and doubled up in pain every now and again. A doctor suggested to Claire that we give him sedative and calming drugs tonight whether he needs them or not to try to get him to distinguish between day and night. There’s nothing wrong with the suggestion, but come midnight when he starts to become unsettled I’m told by the nurses that only one of the drugs will be given and that the doctor had said he’d speak to me about it before he went home. He didn’t. I protest that we’re not sticking to the plan and I’m unsure if it will work. It’s been in place 5 days now and we haven’t actually followed it to the letter once. Sure enough, what should work straight away and last 8-10 hours leaves Josh crying out for an hour and wake up again at 5am. We manage to settle him again, so all in all not a bad night.
Monday 6th September
Josh begins to stir around 10am and appears to be very alert. His eyes are open and they follow me round the room as I tidy up all the empty syringes, aprons and empty thermometer packs from the floor. Our main nurse today has a lovely assistant from the Czech Republic who has only just learnt to speak English but is already more articulate than a few of the British nurses we’ve met over the years. We give Josh a bed bath and he watches her sneakily as she gives him a nice massage. Coincidentally, someone pops their head around the door while this is going on and offers me a 3pm slot to have my very own massage. This is something the hospital does from time to time for poor beleaguered parents. Normally I assume someone else needs it more than me and decline, but my back’s not great from lifting Josh continually and I gladly accept this time. Josh’s calcium is still high but coming down. The endocrine team examine Josh and will make a call on whether they need to do more to keep it in check. My massage beckons after lunch and I venture upstairs. Given that I’ve now slimmed down and toned up I’m happy removing my shirt and don’t even take it personally that I’m on Elephant ward. The aromatherapy oils come out, the new age music CD goes and for 30mins or so I completely forget I’m on a hospital ward. When she’s finished my masseuse tells me she’s got another 5 minutes to spare and asks if I want my feet done too. Hard to resist – especially now they’re relatively smooth since I started planing them like timber with my pound shop Ped-egg. Unfortunately next week is her last week ever due to funding. She books the same 3pm slot for whichever of us is in the hospital that day. I will tell Claire, obviously, but not until we’ve worked out our rota as I suspect it she just might try and fix it so it’s her. Josh is still asleep when I return. To help his kidneys the doctors have stopped one of his drugs for a couple of days and tomorrow he will have a reduced dose of the one that’s supposed to battle the JC. He’s fighting off a temperature too at the moment, so they’re introducing another antibiotic into the mix. I lose count of how many times I have to change him during the afternoon, but all the good work on my back has been undone before the clock strikes six. We have another great nurse on duty tonight looking after us. There are more than a few here and it makes a real difference to how you feel going into the evening. All is calm until around 10pm when Josh starts to cry out and I try asking him why. It’s either horrendous pain or huge frustration. He reaches out towards me and I ask him if he wants a hug. When he doesn’t reply I bend down and ask him again, at which point he grabs my nose and cheek with both hands and twists them round violently while he yells ‘No’ at the top of his voice. It’s like a scene from The Exorcist and the pain is excruciating but it doesn’t even begin to compare to the joy of hearing Josh’s voice again. Now that we’ve safely ruled out the hug, I ask him a few more questions and he manages to say ‘no’ a few more times. It’s great to hear him talk again but I’m none the wiser. He starts a sentence with the word ‘ Can…’ but it tails off. I assume he wants water and he sucks away on a sponge lollipop for a few minutes before settling down to sleep. I climb into bed nursing my twisted nose, safe in the knowledge that any permanent damage would almost certainly be an improvement…
Tuesday 7th September
Having changed Josh on my own more times than I care to remember I have now truly perfected the art. Last night at 3am, still heavily under the influence of sleep, I managed to change a wet, diarrhea ridden nappy that weighed almost as much as Josh himself in just under 2 minutes. Surely a new world record ? Don’t forget this includes lifting him up off the bed twice, wiping him down, changing his bed sheets and his protective mats. The nurses are usually happy to help out, but last night’s nurse ( excellent in every other respect ) has just had an operation that means she can’t lift heavy objects and Josh definitely qualifies as one of those at the moment. He had a good night again, only becoming distressed and hard to settle between 3am -5am. During that time he didn’t say anything but reached out for my hand lovingly, only to grab my finger and attempt to bite it off ! I’m trying not to take it personally as I know how frustrated he is and the need to lash out is actually a good sign. I’d just prefer it if I wasn’t in the direct line of fire all the time. The white lead on Josh’s Hickman line was blocked last night. It’s been threatening to do that for a couple of weeks and the hospital equivalent of Dynarod have been alerted. Hopefully it can be sorted out quickly as, even with a triple connection on his red lead, there’s a whole backlog of infusions building up. Josh is alert and contented when he wakes up around 10am but doesn’t say any more words until the physiotherapists arrive an hour later. They manage to sit him up on the bed without holding him. It’s another breakthrough as he manages to keep his neck, head and back upright for at least five minutes. When they suggest we put his feet back in splints to straighten them, he presumably mishears or misunderstands their question and comes out with a heartfelt and pleading ‘Yes’. My guess is he thought they asked if he wanted to lie down again, but the question’s irrelevant anyway, compared to the response. Claire arrives just as the ward round is taking place, It’s another positive one as far as the doctors are concerned. Key factors from my point of view are monitoring the return of his tremors and dealing with his low oxygen saturation levels which they don’t seem too worried about as his lungs and chest sound good, but are concerning me. They suggest an x-ray today just to check. After a sprint to Charing Cross and a quick switch of trains at Orpington, I have just enough time to nip to the gym before picking Joseph up. His Virgin Active swimming lessons began again today but I may have to pull him out. The younger class is oversubscribed to the degree that they only swim 3 breadths in 30 minutes and the next grade up has just two pupils and an elderly instructor that looks like he’s wandered in from the allotments nearby and doesn’t even get in the water with the kids. Claire’s news this evening is good, bad and ugly. The good is that Josh has been talking even more – saying ‘Mum’ and ‘ yes’ several times, adding ‘okay’ to his vocabulary and asking ‘ Can you…’ when he needs changing. He even managed a smile at one point. The bad news is that his oxygen saturation has dropped substantially during the day. The ugly is the results of the x-ray which show fluid in his lungs again and, more worryingly, around his heart. The longer the fluid sits around the more likely he is to pick up infections so they’re adding yet another anti-biotic to his ever growing list. They’re right to be treating it aggressively, but the fact this has all happened because they’ve filled him with fluids to flush out his calcium means it’s largely a self-inflicted problem. At this moment in time, we’re not quite sure how worried we should be, but it’s undoubtedly another setback just as things were picking up.
