Monday 30th November 2009
A day of knuckling down to some good old fashioned advertising work, interspersed with digging all our advent calendars out of hibernation in the loft. Joseph is already eyeing up the ones he knows I’m going to put chocolates in along with his new Ben 10 Alien Force one that already does. Tomorrow we all start counting the days one way or another. Whether it’s a little window being opened to reveal a nativity scene or a chocolate behind it, or trying to remember how long we’ve been separated as a family, makes no real difference. The 24th of December is the date that’s in all our minds and whether we’ll be re-united by then or not. The signs don’t tell us anything. Josh is bordering on a temperature at the moment which isn’t good, but he’s opening his bowels regularly and in a bed-pan rather than pull-ups which is. The main gastro consultant says we can start on elemental feed today which gets our hopes up, but it will be introduced so slowly it’ll be a good few weeks before food of any sort is added to his diet. Our chances of staying on Fox ward have increased because it’s become blindingly obvious that nobody had thought the consequences us of moving to Rainforest through, and yet there’s been no suggestion as to what will happen instead when the other patients arrive. We’ve decided to wait until February before we start putting Josh’s foot in plaster, but there’s no guarantee it will mean he won’t face surgery. To every answer there’s another question, to every yin a yang. Joseph’s big question for the day is whether he can take a jumbo sized Pepperami into school tomorrow for his snack. I can’t see why not as it’s not quite large enough to be deemed an offensive weapon although his breath could probably be classed as such after he’s eaten it. He flashes me a big grin as I take one out of the fridge and pop it into his bag. Once he’s in nodland it’s straight back to work and trying to work out just where I’m going to find the hours this week to get everything done. As the clock strikes one I find myself eyeing Joseph’s advent calendar with the same desperate look he had on his face earlier. Only fear for my life stops me nicking one of his chocolates.
Tuesday 1st December 2009
Just writing the date down is a shock. Where did the last 3 months go ? Joseph doesn’t care as he tears open his first window on the calendar and devours a Father Christmas shaped chocolate without even noticing what it was. An hour later he’s sitting at his school desk and I’m on a train to London with last night’s work safely deposited on a memory stick . Whether it makes any sense whatsoever in the cold light of day remains to be seen. Coincidentally the two offices I’ve worked out of most this year are only a gallstone’s throw away from Great Ormond Street, which is rather handy. Today I’m working with the same planner I met on an earlier job and we make a breakthrough pretty quickly. Given that the project involves chocolate bars, this is hardly surprising. When he has to leave for another meeting, I relieve Claire at GOSH. It’s been a struggle for her this weekend and for once I think she’s relieved to be heading home. Josh looks pale but is bright enough. The doctors look shocked to see us both together in the same room when they do their rounds. They were probably under the impression we were one and the same person in drag – a bit like Michael and Latoya Jackson. There is still no resolution on the ward front but we’re standing firm. The plan is to slowly reduce all Josh’s immunosupressants to allow his new immune system to get into its stride and become stronger. A few minutes after Claire leaves the phone rings by Josh’s bed. This only ever happens when it’s a wrong number or he’s needed for tests of some kind. It’s my wife. With Josh’s teacher on the way up and Joseph booked in to play with a friend after school, she suggests we have lunch together. I leave as fast as BMT protocol allows and we head for a Thai restaurant nearby. Unsure how she’s feel about me reading The Sun at the table out of habit, we talk instead which is far more entertaining. Back on the ward, I discover Claire volunteered me to draw a Santa and his sleigh for the frieze in the playroom. With work mounting up, I only spend 5 minutes on this but the nurses all appear happy with the result – it’s amazing what a bit of glitter can do. Josh isn’t quite himself today and can’t settle. When I start to work in the playroom, he goes back to the room. As soon as I set up camp in the room, he’s off down the corridor again. It’s a huge relief when his physiotherapist arrives to take him to the gym at 4pm as I can finally get something done. Ten minutes later he’s back in the room desperate for a poo. By the time he’s finished, his session has ended. I manage to start work again after his bath while he watches a movie. The only problem is hisTPN which keeps occluding downstream and starts beeping. It appears to be something to do with the pressure his Lipids are running through at, but nobody can work out why. This means that for the next 3 hours I have to reset the machine every 5 minutes. As you can imagine, not much work gets done in between. The nurses try everything from changing pumps to lowering the pressure. Eventually the problem seems to rectify itself only to reappear through his Vamin, the more essential part of his TPN. At around 2am, the decision is made to take him off his TPN completely. It’s the second night in a row this has happened which means he is getting nothing like the nutrition his body needs. Josh’s weight has really dipped in the last few weeks as it is, so we will have to get to the bottom of this soon. Chances are that the fault lies in the giving sets which attach to his line but these can’t be replaced once TPN has started as it would become contaminated. It’s gone 3am before I finish work. Just as I settle down to sleep his Elemental feed pump starts to bleep and show an occlusion…
Wednesday 2nd December 2009
Am up early to check everything I wrote last night. It all looks fine. After a quick bath I leave Josh asleep and start the five minute walk into work wondering why on earth people make such a fuss about commuting. The project goes well finish and I finish early. Hurrying back in the hope that Josh is still asleep, I’m shocked to find him not only wide awake but sitting up working in bed with his new teacher. She isn’t in bed with him, obviously, although if it was Joseph, I wouldn’t put it past him. As she’s just arrived, it means I can nip out to lunch. It’s only when I arrive at one of my regular restaurants that I realise it’s still only 11.15am and doesn’t open until noon. Decide to try somewhere new which proves a terrible mistake as I shovel down the world’s most tasteless chilli con carne and soggy rice. On the way back I pop into the Thai restaurant to pick up a scarf Claire left behind yesterday. The waitress looks disappointed that I’m not a paying customer, as nobody is eating in there yet again today, but hands over the scarf begrudgingly. After a music session in the playroom which is slightly more tuneful than the last, Josh and I spend the afternoon on the laptop ploughing through some CD Roms a friend lent us. First up is a Disney Trivial Pursuit style quiz which we really enjoy apart from the questions. Even on easy, my first question is ‘How many spots does each Dalmatian in 101 Dalmatians have ?’ Seriously, not even the animators could answer that. I choose a Song question knowing it’s my strength only to be asked, ‘How many dolls are singing on the Disney ride ‘ It’s a small world ?’ We abandon the game after 40 minutes with Josh narrowly ahead having answered a couple of questions correctly and try the educational games instead which are far more rewarding. By the time Josh settles down after his bath to watch ‘Space Buddies’ about dogs in space, I’m starving. A trip to the kitchen brings no joy and I end up munching my way through dry crackers while Josh guffaws at the dog’s antics. I manage about five before I have to give up. Not sure what the world record is, but I think it’s safe. Josh is put on IV fluids tonight as well as his TPN which is thankfully occlusion free. Unfortunately the valve for his feed springs a leak just as we're both nodding off and I have to change his bed linen and pyjamas again before crawling back into bed.
Thursday 3rd December 2009
There’s a movie out at the moment called Paranormal Activity. I haven’t seen it, as I’m couped up in here most of the time, but it’s meant to be one of the scariest films of all time. It’s all about things that go bump in the night and I can vouch for how frightening that is after last night. No beeps, but plenty of strange noises. It appears that we ran out of Blue Tac over the weekend and Claire resorted to loops of surgical tape to attach Josh’s pictures, cards and puppets to the walls. Last night they began falling off the walls. The first two or three really made me jump as I was in a deep sleep and had no idea what the sound was. It was only when a get-well-soon card attacked my face that I realized what was happening, by which time I may well have been hyperventilating. Since my two ear operations my hearing has vastly improved. Last year I had to sleep with one hearing aid in all the time and swap it from one ear to the other every time I turned over. This year I always hear Josh in the night when he calls out which means he doesn’t have to resort to throwing things at me to get my attention. It was normally pillows, but if I still didn’t respond, heavier objects would soon follow. I seem to remember a pack of Top Trumps bouncing off my head at 4am one morning and they didn’t even have the decency to wish me ‘a speedy recovery’ unlike the card that nearly took my eye out last night. Josh’s HB levels have been dropping steadily again and he may need another transfusion today. In case you’re confused, HB refers to Haemoglobin - a protein that enables red blood cells to carry oxygen from the lungs to the rest of the body - and has nothing whatsoever to do with how much brown sauce Josh has on a bacon sandwich. His temperature is hovering around 37.8 and he asks not to do school today as he wants to go back to sleep which he promptly does. This allows me to work but is not good in any other respect. It’s a long, slow day. Even the nurses find time dragging without Josh stalking them. He wakes again just as his occupational therapist arrives to assess his fine motor skills. I explain it’s not the best time. He perks up for a few minutes when we start a game of pool in the playroom, but slopes off down the corridor dragging his tail behind him halfway through. We bump into the chaplain on the way back to the room. I only know it’s her because she keeps touching my arm reassuringly as she talks. They must teach you how to do this at chaplain school because it’s a common clergy trait. We both read for a short time and he snuggles up on my bed next to me. His shiny head feels hot but his temperature has dropped a little. It’s only later after his bath,when one of the nurses is in the room, that he tells me he’s experiencing pain when he wees. She overhears and tells us it could be a BK virus which is common on the ward. Not sure if it can be treated but we send samples off for analysis anyway. We both go to bed relatively early hoping for a better day tomorrow. Shame I haven’t got a crash helmet with me as there are another 24 get-well-soon cards poised above my head just waiting to pounce…
Friday 4th December 2009
It’s been 44 days since Josh’s transplant. I’ve lost count of how many days have passed since we first arrived, but it was pretty much summer back then and today feels like the middle of winter. The little man has been fantastic. We don’t tell him this every day, just in case it goes to his shiny little domed head, but hopefully he hears it often enough to know how proud we are. He seems to have renewed energy this morning, even though he didn’t have a transfusion last night. His HB levels have picked up again, but this often happens just before they plummet so I think he will definitely be having one in the next 24 hours. The hospital is starting to look very Christmassy now, with decorations being added on a daily basis. How refreshing that they’ve waited until December before decking the wards with boughs of holly. I swear some high street shops put their Christmas displays up long before we came in here. Walking back to the ward after a bite to eat, I bump into one of the BMT doctors in the corridor. He asks if he can speak to me alone, leads me into an empty room and motions for me to sit down. My heart skips a beat as the last time something like this happened was in Faro hospital in Portugal when I was told my son was dying and to call my wife as he didn’t have long left. It’s something of a relief then, when he tells me that a collective decision has been made and Josh will be relocated to Rainforest ward next week. I immediately feel my anger start to rise, but take a deep breath and calmly tell him that we won’t leave our room unless we are offered something comparable that does not compromise our son’s health. As he goes into more detail, it appears that Gastro had always planned for their BMT patients to return to Rainforest after 6 weeks. This is fair enough, except Josh is the first and nobody’s thought it through. With no private bathrooms in any of the rooms, he will have to share with everyone else on the ward. As this includes patients, relatives and friends of all ages, sizes, shapes and personal habits, we are naturally concerned as it directly contradicts the BMT manual they gave us when we arrived. It clearly states, your honour, that ‘the period of highest risk for a patient is the first six months after BMT’. It states that ‘during isolation and until discharge visitors should be limited to the 3 carers, grandparents and siblings to minimise risk’. It also states that ‘your child should bath or shower daily’ even when you’re home and that it is ‘only 2-3 months after you’ve been discharged that you should consider asking about relaxing precautions’. So why on earth would we compromise Josh’s health after just 44 days ? What is the point of staying away from shops, cafes and cinemas for the next 3 months if we’re going to let him bathe in the same room as a public toilet now ? I say all this without raising my voice. I ask the doctor if he would let his child move, he hesitates but infers not. It is obviously not a decision he agrees with. There is no point in taking this conversation any further and I ask to speak to whoever it is that thinks differently. He tells me someone will be along to discuss the matter later, but it’s gone 3pm on a Friday afternoon and if anyone senior is still around, I’ll eat my surgical mask. Josh is up and down again today, literally. Cavorting down the corridor one minute chasing nurses, too tired for physio the next. His temperature is still hovering just under 38. He will definitely have a blood transfusion tonight. An early bath this afternoon, as Josh insists we watch the World Cup draw live, which isn’t exactly riveting viewing I have to say. Basically it’s a 90 minute TV show about pulling 32 balls out of 4 pots. If the national lottery was this long and drawn out, we’d still be waiting for the first ever jackpot winner.
Saturday 5th December 2009
Today revolves completely around one event. Joseph is coming to the ward. Josh has been telling the nurses for the last few days and he’s so excited. Everyone’s desperate to meet him, but quite how they’ll cope with two children smacking their bums is anybody’s guess. No blood arrives overnight, so the nurses chase it up in the morning. The plan is for the transfusion to finish before Joseph arrives. It’s gone noon before Josh is awake and asking what we’re doing. I show him how to do PowerPoint on my laptop and he constructs a series of graphs and pie charts illustrating how many goals for and against every Premier League team has, and who’s lost, won or drawn the most games. This is called disguised learning. After his transfusion is over he’s roaming the corridors again and ends up playing spider solitaire on a nurse’s computer while I change the beds and pack my bags up. It’s nearly 5pm before Claire and Joseph arrive. They set off two hours ago, straight after the school fete, but an organised march in London brought buses to a standstill and they had to traipse through the wet, crowded streets of London. Fortunately the journey has done nothing to dampen Joseph’s enthusiasm. It’s the first time he’s seen his big brother since he lost his hair and he’s desperate to stroke his bald head, which is still covered with a few strands of light fluff. Once he’s done that, it’s business as usual and no nurses are safe. The playroom is empty, so once they’ve exhausted the entire nursing staff, we retire to there while Claire nips down to the canteen to eat. The boys play Lego together, yabbering away like they’ve never been apart. It’s the same but different. They’ve both had to do a fair bit of growing up in the last three months and the way they interact has changed. When Joseph gives an impromptu rendition of the Christmas songs from his nativity, Josh applauds heartily but we’re all close to tears. When I leave with Joseph, Josh wants to see us to the ward door which he’s allowed to do, and then to the lift which he’s not. We part feeling sad but happy as we leave him on the ward and wave frantically from the other side of the door. Outside it’s still pouring and we head for Charing Cross station on foot. Dragging a large suitcase and a small child across London isn’t easy at the best of times, when it’s Saturday night and it’s raining it’s near impossible. We duck into Pizza Express for half an hour, both knowing how ecstatic Josh would be if he could eat here too. We make our train with enough time to spare to buy sweets for the journey. A lady sitting opposite us smiles at Joseph and he offers her a Haribo elf. She declines and he offers it to me. I snap it up before he can change his mind. A disheveled man reeking of cigarettes and carrying a large Boxer dog gets on at London Bridge and plants himself down next to us. Joseph is fascinated and after checking out both owner and dog for a few stops, we strike up a conversation and Joseph gets to stroke him – the dog, that is. When we get off the train, the heavens open like never before. The main road through Petts Wood is like a river as we sprint for the car which is parked across a friend’s drive. We are soaked to the skin in the few minutes it takes to get there. I fear the worst for the porch, but whatever Dyno Rod did as a temporary measure yesterday appears to have worked and there isn’t a moat around our front door for a change. By the time we’re dry and changed and Joseph’s in bed it’s 9pm. By the time the washing’s in and I’ve unpacked everything it’s gone midnight.
Sunday 6th December 2009
A text from Claire tells me Josh definitely has BK virus and his wee is now quite bloody rather than just traces. It infects most people but generally causes no symptoms. However, ‘it can be reactivated when a patient receives immunosuppressive therapy following an organ transplant’. Yep, the online medical dictionary explains all yet again. Josh also has a bacterial urine infection so has started on IV antibiotics too. Even with new blood, he was too tired to watch X Factor last night. Joseph and I are up and about quite late after our waterlogged evening, but it’s a bright sunny day and he cycles to the local newsagents while I quickstep alongside him to buy the Sunday Papers and milk for cereal. Every newspaper had a free World Cup chart inside but they’re all on newsprint so I can’t take them in for Josh – even though I know he’s desperate. Normal family life is still a long, long way away. Claire’s left a note out about taking Joseph to the O2 to see Peter Pan. As with most things, we’ll have to make a call on which one of us goes with him. Even if Josh is home he won’t be able to go to such a public place. Cinemas, restaurants and even other people’s houses will all be no go areas for many months to come. Later on, while playing Harry Potter with Joseph, we pretend dementors are attacking us and he yells ‘ Expelliarmus’ as he points his wand at our imaginary foes. I try to build the excitement by telling him his spell isn’t working and he comes out with ‘ Expecto Patronum’ which sounds vaguely familiar. When I look it up on the internet, I discover that it’s a spell specifically to combat dementors and stop them draining your powers. How he’s remembered this when he’s only ever seen the films once is beyond me. Am careful not to upset him for the rest of the day, just in case he turns me into a chocolate frog and devours me. Tomorrow, his Auntie is picking him up from school and he’s spending the night at her house as I’m filming in London until late evening. The day after that is the first showing of his nativity. Joseph will be playing the part of an angel. Typecast already at the age of four.
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