Tuesday 7th December
It’s the school’s nativity play today and proud parents arrive early to get a good view of their little angels, shepherds and kings. Joseph is one of around twenty shepherds wearing head dresses to the right of the stage. I haven’t seen so many tea towels in one place since the John Lewis sale. Everything seems to go remarkably smoothly despite precious rehearsal time lost to the snow. So much hard work goes into staging these productions. Just organizing where the children stand and sit on stage must be a full time job, never mind writing and producing the play and making sure they all know their lines. Thankfully nobody’s seen fit to rewrite ‘The Greatest Story Ever Told’ for modern audiences and our Lord is still born in a stable rather than a Holiday Inn that Mary and Joseph booked in advance through Expedia.com. Joseph does a sterling job when he’s in the spotlight despite some pre-match nerves. He tends not to smile much when he’s on stage as he takes it all very seriously. Luckily he didn’t take his brooding, Brando-esque method acting too far and spend the last week sleeping under the stars with a flock of sheep. While I’m there I pick up a Christmas Hamper that Claire’s ma and pa won in the raffle. It’s twice the size and weight I expected and I carry it slowly to the car as the pavements are still icy and I’d hate to drop it. At home it’s the usual mad scramble packing for the hospital, although I do find time for a quick visit to the gym – mostly because I didn’t have a bath last night. The trains are all running and on time, but they can’t sell me a ticket at the office because their machines have gone down. I pay at the other end and don’t get fined. Last time Claire did the same she met a jobsworth and nearly was. Josh is asleep in the room when I walk in and Claire is in a meeting. She’s only gone half an hour and the outcome is that Josh will be recommended for funding for Tadworth, although it’s certainly not a foregone conclusion that we will get it. Ward round saw the doctor’s convinced Josh still has the norovirus as they’ve found no evidence of any other virus and they warn us it could go on for weeks if not months. Both Claire and I are quite happy with that as it’s the lesser of many evils. I’d noticed that Josh was becoming slightly confused again over the weekend and Claire feels the same. It could well be a side effect of one of the drugs he’s been put on recently and they swap it for another, just in case. The house on Grey’s Inn Road is now booked for Christmas week, although it’s still possible that Joseph won’t be allowed to see Josh until the New Year. His nibs is downstairs for an MRI today and they come to collect him around 4pm, just after Claire heads off home. He goes under anesthetic without so much as a peep but is much more vocal and upset when he comes round about an hour later. He sleeps again until 8pm when he suddenly sits up and wants to listen to music. He spends the next couple of hours with his headphones on singing at the top of his voice and scares the life out of our male nurse by pointing at him and singing ‘ Shut your lips and talk with your hips’ as he walks through the door. He gets a flying visit from his favourite nurse just before 10pm and natters to her and then to me for an hour after that. It’s great to have him back.
Wednesday 8th December
Up and down, up and down. It’s another unsettled night, not helped by us losing another pillow when he had his MRI. I wake him for physio but he doesn’t feel well and struggles through it. After that it’s straight down to x-ray for the appointment we had to cancel yesterday. I lift Josh up onto the bed and they photograph his spine and neck. We’d been told it was purely routine but the doctor on duty this morning said something about a vertebrae that looked broken on the CT scan of his chest. She tells me this could be due to high doses of steroids but not to worry as broken might be the wrong word as her English isn’t so good sometimes. I am worried. Every time we’ve been told not to worry about something it’s ended up being something to worry about. While we’re in x-ray, I spot a spare pillow lying around and smuggle it up to our room squashed into a pillow case that we use for his feet. He wants to go straight back to sleep but his eyedrops are due at noon, like a showdown in an old Western, and I try to keep him awake. Luckily his music teacher hasn’t been banned from the ward because of the norovirus ( which makes you wonder why his school teacher has…) and she manages a quick session until they arrive. Josh is on bongos and I accompany him on the tambourine. We’re in negotiations with Simon Cowell to release it as a download on iTunes and expect it to be this year’s Christmas number one. Once his drops are in he has a snooze, although it’s interrupted when the senior staff nurse arrives to try and unblock the red lumin of his Hickman line. Déjà vu. It doesn’t work and we don’t know why it’s not working. After his eye examination, which is fine, I’m told that the latest lab tests confirm he still has norovirus. The results of his MRI show no changes in his white matter which is good news, The x-ray on his back and neck still have to be looked at but I throw a few possible words at the doctor to get a better insight into the problem and the one she responds to is ‘compressed’. Whatever it is, it can potentially be treated but we won’t cross that bridge until we know exactly what the problem is. Josh is awake for a couple of hours but too tired to even watch Street Striker or The Simpsons and is asleep by 7pm. It’s becoming the norm now, but given he’s still fighting a virus and the room remains akin to living on the equator, it’s not surprising he’s so lacking in energy. An hour later he’s awake and we watch a couple of things together before he becomes tired again. Claire calls to tell me that Joseph had felt sick at a party and threw up in the car on the home. It makes him sound like a drunken teenager, but it’s probably the norovirus that’s going around the school. I read yesterday that NHS Direct is getting 4,000 calls a week from people who have the symptoms. If both Josh and Joseph have it does it mean they can spend Christmas together ?
Thursday 9th December
Last night was even more active than the one before. I’m on a run of 6 nights at GOSH in the last 7 days and it’s taking its toll. Josh has me up around 20 times an hour on average but sometimes it’s closer to 50. Bodily functions are easier to handle than his obsessive demands to make him feel ‘ more comfy.’ We try fan on, fan off, vest on, vest off, pants on, no pants, one sheet, two sheets, a sheet and a blanket and a blanket under the sheet all to no avail. Plaster on thumb to stop him sucking it, plaster off so he can, one pillow under his feet, two pillows under his feet, no pillows, head up the bed, head down the bed, pillow under shoulders, head rest up, head rest down then he wants we to patch his Hickman line dressing as it’s flapping and annoying him. Once that’s done it’s back to fan on, fan off and the whole process starts again. It’s horrible when you can’t get to sleep and I do sympathize with him but it’s not easy at 3am. On the rare occasions he does sleep he’s woken up for infusions as he now has twice as many because one of his lines is blocked and they can’t do two simultaneously. I give up on even trying to sleep and just watch movies with one earpiece in and the other hanging loose so I can still here Josh when he calls out. Josh sleeps until his physio session again and I ask the physiotherapist if she’s aware of any possible spinal problems, but she’s not as there’s nothing in his notes. This feels like a fundamental oversight and we both step outside to speak to the doctor about it. She tells us that his neck is fine but 3 vertebrae are damaged and she still doesn’t know the word to describe what the problem is or what it means to his health or mobility. I go bananas. It’s not her fault but it’s shameful we found this out by accident and nobody has discussed any of it with us. This is what happened with his JC virus and with the loss of his eyesight and I’ve had enough. Claire was saying it was time we had another sit down meeting with the whole team and we schedule one for tomorrow. Josh is itching again when I return to the room and I take him off to give him a bath. As I start to empty the bath, the bathroom floods again. I quickly pop the plug back in and call a nurse to witness the water seeping out, as last time I reported it the maintenance team didn’t believe me and did nothing. It doesn’t happen every time, but given our bathroom is above the PICU unit you’d have thought I’d have been taken seriously. I report it, along with a leak under the sink in the sluice room that has flooded the floor to such a degree I almost go flying when I pop in to stock up on wee bottles. This time someone comes up pretty promptly - not surprisingly as PICU has water dripping through their ceiling. We start off on the wrong foot and I’m more aggressive than I should be when he asks me what happened and then talks over my reply. Once I’ve shut him up and explained how his department ignored me last time he’s fine and we male bond ( Who says ‘bromance’ is dead ?). I leave him to it and 20 minutes later he knocks to tell me it’s sorted. Basically, the company that fitted it hadn’t tightened any of the pipework. The refit that closed Fox ward down earlier in the year has been a disaster from start to finish. And it hasn’t finished yet, as one of the nurses asks if we can leave the room while another maintenance team comes in to switch our light switches from outside to inside the room – another basic planning error. Quite where we’re meant to go is anyone’s guess, so I move the furniture around in the playroom and wheel Josh’s bed down there where he remains asleep until his bone density scan. We’ve never had one before and it’s deep in the bowels of the building. The technician is lovely and possibly the warmest, funniest person we’ve met here. She and Josh get on like a house on fire and after the scan, when Josh asks to go outside for some fresh air, she not only comes with us but gives Josh two extra blankets and a hat to keep his head warm that he can keep. After a couple of photos she offers to take, Josh is ready to retreat back into the warmth and into our room which the workman have vacated and now has his bed back in it. The new light switch looks very smart and neat over his bed, but when I press the buttons nothing happens. They will be back tomorrow to fix it, allegedly. Josh raises his eyes to heaven and then goes straight to sleep. It’s only 4pm but I feel like joining him.
Friday 10th December
Claire had some new thoughts on what happens to Josh when he leaves GOSH and we discussed them last night. It’s too early to talk about them here but it’s good to have options as we still have no idea when we’ll leave here or what Josh’s needs will be. Our planned talk with the BMT team is up in the air as the only time they can manage is 3pm, by which time I need to be home. Claire arrives at the hospital just after midday having had to stay behind for Josh’s new wheelchair to be delivered. Josh is awake having survived physio and finally caught up with last Sunday’s X Factor. The red lumin on his line was blitzed overnight and they are just about drawing blood back from it today, so hopefully it’s working again. Ward round covers off the issue of Josh’s vertebrae which are ‘wedged’. It’s common in patients on long term steroids and we are again reassured it’s nothing to worry about. Not that we find that particularly reassuring. I leave soon afterwards to pick Joseph up, who is now sporting a new haircut. We drive to Bluewater, under orders from Claire, to buy a particular Christmas present. It’s not a bad time to go and almost sane shopping there, although the car still smells of sick and it takes us 50 minutes instead of twenty. There’s a Winter Wonderland outside with a fair, grotto and a Narnia ice rink. Joseph wants me to take him skating, but with a very expensive, breakable present in my over the shoulder bag it’s too great a risk. I’m not good on skates at the best of times and am worried about being chased round a rink by a giant lion or crushed by a falling wardrobe. We settle on the dodgems instead, where the first thing Joseph does is drive straight into a wall at full speed. Luckily my leg takes most of the impact and both Joseph and present survive the collision intact. We book a free visit to Santa’s Grotto but it leaves us with 90 minutes to kill, so we eat and stroll round the shops before joining the relatively small queue at our allotted time. Joseph rattles off a short but very specific list of presents before Santa shakes his hand and gives him a small gift. It’s a Looney Tunes sticker book and far better than the obligatory plastic car with the wheels drop off or an electronic game from Taiwan that doesn’t work , so he’s well chuffed. Santa’s farewell phrase of ‘ Rock on, Dude’ is slightly inappropriate but doesn’t seem to faze Joseph who falls fast asleep in the car on the way home. I carry him upstairs and manage to slip him out of his coat, shoes and entire school uniform without him waking then call Claire to catch up on her day. We’re both too tired to talk, but soon after hanging up DHL ring the doorbell to deliver a parcel which wakes Joseph up. By the time he’s settled again, I’ve got a second wind and am up until 2am doing washing and Christmassy stuff.
Saturday 11th December
After a nice lie-in, Joseph and I drive to my brother’s in Sevenoaks where we have a spot of lunch and visit his daughter’s school’s Christmas Fayre. It’s just like any other and we spend a small fortune at a variety of stalls and win a ball, a couple of unwanted gifts we donate back to the school, and a bottle of hand cream. Not the best haul of the day. The children get to see Santa and Joseph is so awestruck he doesn’t seem to care that he’s 20 years older than he was yesterday and no longer needs glasses. I leave him there and return home to find out how Claire’s meeting went yesterday. There are few things worth telling you. The results of his bone density tests aren’t in, so we have no idea how weak they are at the moment. Calcium and Vitamin D can be used to try and strengthen them, but if his bones are thinning he’ll need infusions every 3 months for the next year or so. As far as his eyes are concerned, there is little we can do other than continue to monitor them and pray. Low platelets mean his good eye keeps haemorrhaging which is okay if it remains on the periphery of his retina, but will be a major problem if they start to appear closer to the centre. Claire voiced her concern about what will happen over the Christmas period and requested a plan is put in place before people start disappearing for two weeks. Josh has GVHD back, although it’s not being referred to as chronic yet as there’s a chance it will burn itself out rather than plague Josh for the rest of his life. Most worryingly, he has both the JC and BK viruses back in his blood and the levels are rising. They are currently at the same level they were back in September just after he came out of his coma. The team were particularly concerned about this when it happened 2 weeks ago, but deemed it fit not to tell us. They are slightly less worried now that Josh has perked up a little but we are still walking a tightrope and it’s a hell of a long way down. With Joseph on a sleepover, I join a few of the St James’ dads for a couple of pints in Petts Wood at 8pm. It’s a nice diversion, although it’s been so long since I’ve been in a pub I feel a little lost. When did they sweep up the sawdust and stop selling pints of Mead for 7 shillings and sixpence ?
Sunday 12th December
Without Joseph in bed to act as a hot water bottle, it took a long hot bath to warm me up before bed. The house feels very empty today without him but it does mean I can get a few things done – including most of the ironing. Claire had a long, disrupted night at hospital with Josh and they both sleep through until almost midday. He managed to watch X Factor last night, so it’s one less thing for me to put on DVD before driving in tomorrow. A mum from school rings the doorbell around lunchtime with a huge portion of home made pilau rice with chorizo, carrot pickle and bhajis. There’s enough for at least two days, so in theory there’ll be some for Claire, although I’m going through it at such a rate I’m not so sure. Joseph is dropped off around 4pm which gives us more than enough time for fun and games before bed. We catch up with Josh briefly on the phone as Claire desperately tries to keep him awake for the X Factor final. She calls me again just as Joseph is nodding off to tell me to vote for One Direction as she’s promised Josh and doesn’t want to do it from her mobile and find out exactly how much ‘ considerably more’ than a landline it is. I manage to get through first time but she’s texted me the wrong number and I’m told it is NOT an X Factor voting line and that I won’t be charged. I turn on the TV to get the right number and still get through first time which is probably not a good sign. One Direction thank me for their vote which is very nice of them considering how busy they must be tonight, but it’s not enough to save them unfortunately. Hopefully Josh won’t be too disappointed.
