Monday 14th December
Make my way to Great Ormond Street via Argos, working on the theory that nobody ever shops in the City of London outside of their lunch break. My hunch proves correct and I’m in and out in 5 minutes laden with Xmas presents from the boys’ Christmas lists. Claire tells me Josh had a bit of a blow out last night as far as his bowels are concerned and is in far less pain and much brighter today. Our Gastro consultant pays us a visit whilst Claire and I are still together. The plan is to take him off TPN and keep his feed at a lower level until Thursday and see how he copes. This makes sense, although there are no theories offered up as to why he has hit this blip. Just before lunch, one of the BMT doctors asks me to leave the room for a chat. This feels like déjà vu and I’m pretty sure I know what’s coming next as we sit down in a small meeting room off the main corridor. The plan is to move Joshua to a different ward as another patient needs his bed. This is fine, although the suggestion is Rainforest ward once again, which we have already established isn’t up to scratch and potentially puts Josh’s health at risk. When I voice our reservations again, I’m told that if we don’t agree, a child’s transplant will have to be delayed. I go ballistic at this as I’ve already agreed we’ll move but have simply asked for reassurances on a number of issues on which nobody can reassure me. Neither the doctor of the nurse in the room can even confirm why patients need daily baths as documented in their own handout, let alone tell me how they propose we do this on a ward that has no bathroom. The whole conversation is rendered irrelevant when I’m told that there no beds on Rainforest anyway. Still reeling from the conversation, I set off for Old Street which is much further than I’d thought on a quest to find a particular present for Joseph that wasn’t in stock at the Chancery Lane Argos. My 40 minute mini-London marathon is rewarded by finding exactly what I was looking for and I jog back, bag in hand, to find Josh’s teacher has only just left. Result. Within minutes of returning, one of the nurses asks if I’m willing to help them with ‘an experiment’. This is usually the line in a movie that proceeds something terrible happening and the patient waking up with x-ray vision or tentacles for arms. Turns out, all it means is that we have a machine set up on our shelf that monitors the effectiveness of the air filtration in our room. I point out that we may be changing wards to the nurse which starts a long discussion that is both reassuring and scary at the same time. The nurses on both Fox and Robin have been fantastic on the whole and we will really miss them when we move. Being restricted to the room will mean Josh interacting with them less and will no doubt have an effect on his mood. Hopefully it will only be a week or so before we’re home. Josh is still not quite himself and after a couple of FIFA 10 matches asks to go to sleep. After catching up on work, it suddenly dawns on me that I haven’t eaten since yesterday afternoon. I dig out the last 4 crackers from the bottom of a drawer and devour them behind the curtain that masks my bed, like a 12 year old enjoying their first midnight feast.
Tuesday 15th December
We both sleep well. I’m not up until 8.30am which is a first for some time. Josh, remarkably, wakes 30 minutes later asking what to do and plumps for the X Factor double bill he missed at the weekend. One of the top Gastro consultants arrives early to examine Josh’s knee. He’s always been straight-talking and when he asks how I feel about coming back to Rainforest I tell him. He says everything I want to hear, admitting that the lack of facilities on the ward is an oversight and offering reassurances as to how we get around this. I ask for a meeting with ward sisters from both wards before rubber-stamping any move as we still have so many unanswered questions. Claire was so worried about the proposed move last night that she couldn’t sleep. When I call to tell her the plan, we put together a list of demands that need to be met before we’ll leave - like a couple of cornered bank robbers in a hostage negotiation. Josh wants to go back to sleep once X Factor has finished. As I need to walk into town to look at an edit, I let him. He’s awake when I return and managed to stir when his teacher arrived for his daily lesson. It suddenly occurs to me that he’s probably tired as he’s not getting enough calories through his feed. Since it was lowered his TPN had stopped, which by my rough calculations means that he’s on just over half what he should be on. No wonder he said he felt hungry earlier. I brIng this to the attention of the BMT doctors who will make sure he’s on fluids tonight to avoid dehydration, but it still doesn’t address the calorie issue which they need to discuss with Gastro. In the middle of all this, Josh looks lost. He sits in the corridor sucking his thumb, not quite active enough to cavort around the ward even though it’s his last chance before solitary confinement begins on Rainforest. When he eventually comes in for his bath he asks for a cuddle and sinks into my arms. Just as we resume our World Cup tournament, I’m told that Mary, the ward sister would like to talk to me. She is a little shocked to hear that we have had no answers to any of our questions about the move, which is now scheduled for tomorrow morning, and sets about dealing with them one by one. Our biggest issues are the cleaning of the room, the lack of air filtration and the bathroom. By the time we walk over to Rainforest ward, on the other wing, only the bathroom remains a sticking point. Several of the nurses recognize me from last year and are very excited about the prospect of having Joshie back. Things have changed on the ward form what I have heard and what I see. During our stay last year, I regularly had nurses coming up to me in tears because of the way things were run and it appears it is now common knowledge how bad things were back then. There is still only one bathroom for around 15 patients and an infinite number of visitors. When I take Mary to show her the bathroom it’s engaged. Just as I’m explaining that, even though there are several toilets just a few yards away, everyone uses the patient one, a tattooed, overweight Neanderthal emerges doing up his flies. Point made. Inside, the bathroom is much improved and far less of a concern although there is indisputable evidence that the Neanderthal doesn’t know how to lift a toilet seat. We agree this is a real issue and tomorrow I will talk to the Rainforest ward sister about Joshua having a solo spot in there every afternoon just after the cleaners have been in. I also need to ensure that the staff nurse who nearly killed Josh last year by attempting to put his elemental feed down the wrong tube isn’t allowed within a hundred yards of our cubicle. Back on Fox, I phone Claire to reassure her then it’s back to work to tidy up a few last jobs once Josh is asleep. Tomorrow will be a big day for him and a difficult one. As for me, I need a relatively early night as just taking down his get-well cards and packing up his works of art is going to take several hours.
Wednesday 16th December
Am somewhat bizarrely beginning to write today’s blog at 3.25am having taken my current inability to fall asleep to new levels. I’m used to lying awake for a couple of hours every night with my mind racing, but tonight it’s going so fast it’s left Jenson Button trailing in its dust. I give up, climb out of bed and start peeling Josh’s pictures and cards off the walls and doors. By the time I’ve finished there’s a ball of Blue Tac the size of a tangerine resting on the table - how seasonal. Josh woke for a wee about 5 minutes ago and called out to me as he generally does. He’s somewhat shocked to see I’m up and about and as I go down on one knee in front of him, like a prospective groom, to hold the bottle out for him he leans forward and kisses my forehead. Life can feel so magnificent sometimes and his action makes my heart soar. A few minutes later I return to bed convinced I’ll fall asleep as soon as I finish this sentence. It doesn’t pan out that way and I’m up at 6 am having had little more than an hour’s kip. The laboratory data chart that Claire insists we update daily with all Josh’s blood, kidney and liver results, tells me today is 55 days since the transplant and a whopping 100 days since we arrived - but in some ways it’s day zero all over again. Taking down the Christmas decorations from the windows and packing up our clothes, books and games feels sad and empty. If we knew we were going home next week it might be different but we can’t be sure of anything at the moment. It may sound odd, but we’ve been very happy here for the last few months. This has been Josh’s home for 4 months and he’ll really miss the nurses, who have become great friends. His play specialist will change, along with his environment, and he will lose his newly found freedom again as he won’t be able to leave his cubicle or mix with any of the other children. His daily bath will be his one escape from his new cell and even that will be at a specified time now, like a lifer’s time in the prison exercise yard. It doesn’t help that we are downsizing. Think of moving from a mansion in Highgate to a high-rise bed sit in Kilburn and you’ll have some idea of what awaits us. Josh is up early again, sad but also excited about the move. It takes me a further 2 hours to pack everything up in a way that makes some kind of sense at the other end and allow me to find things in a hurry if necessary. The ward sister had an excellent idea last night when I told her how much stuff we have and I pile it onto Joshua’s bed and put the sides up. I wait until he’s out of it, obviously. It fills the entire bed and leaves me to wheel the infamous powder blue suitcase through the hospital. With Josh active I decide to bath him, knowing how unlikely it is that anything will be set up on Rainforest for at least another 24 hours. All clean and shiny, Josh ventures into the corridor on a lap of honour and hands the nurses a collective present to say goodbye and thank you, but it proves somewhat premature. At 11am, when we were due to move, the Gastro doctors arrive. Josh mistakes them for porters and I find it hard not to laugh. The move is imminent. An hour and a half later we are still in our room. Josh is curled up on my bed using my lap as a pillow, as I’ve hidden all ours under his stuff. First rule of staying in hospital: Never, under any circumstance whatsoever surrender a pillow. Finally we’re on our way and after more goodbyes we’re off to Rainforest. When we reach one of the lifts in the other building, however, we hit a snag. The bed is too big for the lift. One of the nurses rushes off and manages to bag a porter who knows a back way – how refreshing that he doesn’t rely on sat-nav. When I arrive on the ward Josh has already re-introduced himself to some familiar, friendly faces and is sitting in his room wondering where on earth we’re going to put everything. So am I. The room is even smaller than I remember. Josh’s bed, which is also too big for the room, is to the right with mine positioned directly behind him. My bed folds out of a cupboard but it’s not a cupboard you can put anything in other than the bed. There is nowhere to put anything. There is normally a small set of drawers but these have probably been scavenged by another parent as soon as the room was emptied. A lot of scavenging goes on in hospital, I prefer to call it pilfering. Having said that, I return to Fox and wheel the Playstation and TV out of the ward into the lift, down to the ground, along two corridors, into another lift and up 5 floors to our room. I did have permission though, so I didn’t feel like a thieving scouser even if I looked like one. On the way over I pass Josh’s teacher and ask if she can come an hour later as the room is a shambles. When she arrives I nip out for something to eat, but am too late to wander into Soho to meet my ex-colleagues for a reunion. This time it’s my turn to apologise. Once I’m back I speak to the ward sister who has been well briefed by Mary and understands this is a learning curve for everyone. The ward has certainly cleaned up its act and one of the senior staff nurses who was hear last year tells me they were voted team of the year which is a fantastic turnaround given how unhappy they all were back then. Josh plays Playstation while I try and find somewhere to put anything. It takes me another two hours and all my cunning to clear away enough stuff for my bed to fold down, by which time I’m just about ready to climb into it. When I put the sheet down I realise it’s a good foot narrower than my previous bed. The room is hot and stuffy, like a sauna, but nobody can advise me on whether I can turn the fan on or not without risking Josh’s health. The window still hasn’t been fixed since April 2008 and won’t close properly. Nobody can tell me if the fresh air poses a threat. The Gastro doctors haven’t briefed the nurses on the change to his feed rate, so I have to call BMT to confirm it’s gone up. None of his medicines have come down from BMT so they are giving what they can, when they can. Some will have to be skipped. Instead of the reformed cardboard wee bottles that come in boxes of a hundred on Fox, here there are only two wee bottles for all the patients. Fortunately they are all either girls or babies so we nab them both and I set up a new system that means I take them out when used and weigh them but rinse and bring them back rather than wait hours while the automatic bedpan washer does a half-hearted job. The two new nurses we have this afternoon and overnight are fantastic and Josh wakes briefly around 11pm to have a long chat with one of them before smiling contentedly and going back to sleep. The room is claustrophobic, poorly lit and under equipped. The curtains are hanging off, the window and door broken and it’s so damn hot my last remaining chunk of Yorkie has melted in my jacket pocket. But somehow, against all odds, it’s familiar and cosy and feels like coming home and I sleep deeper and longer than I have for months. Weird huh ?
Thursday 17th December
Slept even deeper than I realised as neither Josh nor the nurse could rouse me at 3am when his feed leaked for the second time. The first time I changed his sheets, this time his pyjamas took the brunt of it. Once they do wake me I feel jet-lagged and have trouble remembering who or where I am. To find clean pyjamas, I have to pull the suitcase out from its hidey-hole wedged between the bed and the wall. It weighs a ton and I feel a back twinge coming on. Oh, for some cupboard space. Amazingly I go straight back to sleep until 7am. My bed is right next to the window so I can see out without getting up. No snow on the ground after yesterday’s flurry had everyone reacting like overgrown kids and wanting to rush outside. Today will hopefully start to answer a few questions regarding our stay here. Biggest one at the moment is how do I get dressed without a curtain to cover me ? This was always a problem on Rainforest and I was caught out several times by nurses walking in unannounced. I developed several strategies during our stay and decide to opt for plan B. This involves undressing right in front of the door so if anyone opens it they won’t be able to barge in. This morning it works well, on previous occasions I’ve ended up with a bruised hip and a stubbed toe when the door has opened unexpectedly and whacked me for six. The Gastro doctors are round early and we talk in the corridor so Josh doesn’t wake. Feed will continue to increase and be monitored. Real food possibly introduced Monday or Tuesday. I say real food but neither you nor I would call it that as it’s a stricter than strict diet. His cyclosporin levels are high
– this is a toxic drug he has been on for well over a year and they have suspended it pending his next blood result. His kidney functions and readings are suffering too, probably because of all his antibiotics, but they will wait until today’s bloods before calling in the renal team. Josh remains asleep, probably due to the global warming going on in our room. Hard to believe the forecasts of 8 inches of snow. The high temperature mixed with the cool fan, which is now cleared and on permanently, produces a warm tropical breeze which makes us contented and drowsy. Sod my fold away bed, I’m thinking of laying a towel on the floor and buying some Ambre Solaire. Catch up with Claire and brief her on what to bring with her tomorrow, apart from a bikini. Whatever she does turn up with, I have to take at least 4 times as much home otherwise we won’t be able to move. Claire tells me The Black Eyed Peas are in concert at the O2 next year and thinks we should treat ourselves and go out more. We could hardly go out less to be honest, but she’s right as usual and we vow to make it a New Year’s resolution. Personally I’d like to see Tiger Woods in panto before Christmas in an all-new production of the classic fairytale ‘ Woods in the Babes.’ Having slept in shorts and a t-shirt due to the heat, I get some strange looks when I wander down to the GOSH shop to buy a paper and chocolate milk for breakfast. I’m not the first to do this and you often see people dressed completely inappropriately on the streets near the hospital because they packed in Summer never expecting to still be here when the first snow falls. Josh wakes at a reasonable hour and wants to work which we do as I can finally get a decent wi-fi signal on this side of the hospital. When his teacher arrives I skedaddle, determined not to get sidetracked today as I keep forgetting to have lunch. On the way to my favourite Chinese buffet, I pass Borders which is going into Total Liquidation according to the signs and pop in to find hoards of people and offers of up to 70% off. ‘Just a quick look ‘ is the intention but 30 minutes later I’m queuing behind the world and his missus with my arms piled high with bargains for the boys. Who’d have thought Borders would disappear from our High Street. Is nothing sacred ? It’ll be bloody Woolworths next, you mark my words. After the quickest Chinese in history, I’m back on schedule. Josh has an x-ray on his knee at 3pm, although the woman taking it is so used to x-raying his chest and bowel she stands him by the wrong machine until we point out her error. On the ward, everything and everybody is gearing up for Josh’s bath. It’s like a military operation. At sixteen hundred hours precisely, right on schedule, the cleaners go in and napalm the bathroom for germs. A minute later, one of the staff sticks a Ben 10 sign requesting nobody enters the room up on the door. The moment the cleaners exit, Josh and I march in armed with shampoo, Oilatum and several heavy duty towels. I strip Josh and run the bath only to discover there is no hot water. Tepid would be an overstatement. The nurses ring maintenance only to be told the boiler has gone off and it should warm up again in about 2 hours. One of the nurses boils a kettle and we attempt a stand up bed bath that leaves Josh clean but cold and far from relaxed. All credit to the nurses, but the maintenance department should be shot. A dressing change later, I sit down to write a press release for our Railway Children charity stunt tomorrow, and Josh opts for Playstation. We’re both engrossed when out third carer, cousin Lucie, arrives to visit Josh. This means I can brave the cold and make a cameo appearance at a production company Christmas do. By sheer chance I meet an ex-colleague from my last agency who is there with her other half. Great to see a friendly face and for an hour or so it’s a real escape from hospital life. Walking back it begins to snow. Weaving my way along Oxford Street, through hoards of Xmas shoppers laden with carrier bags and streams of party goers wearing reindeer horns, micro skirts and drunken smiles, I can’t help feeling completely out of step with the world. Josh is ready for bed when I get back. Lucie needs to make her train before the snow starts to stick and cause travel chaos. And I have to re-arrange the furniture to clear a path to my bed before clambering in and picking up my laptop to write this nonsense. Just as I’m finishing I hear Josh call out and pull back the curtain to see a rather tall, and to be honest quite possibly transsexual, Eastern European nurse towering over his bed and whipping the sheet off. Yep, it’s either another faulty valve or another faulty nurse. Either way I have to change Josh’s pyjamas for the second night running. This time I forget my key card when I leave the ward to get clean sheets and am left standing in the corridor in my PJ’s for five minutes before anyone hears the buzzer. Still, it could be worse. The last time I was locked out was when we all lived in a charity house round the corner from the hospital last year and I nearly lost my dangly bits trying to climb over a spiked iron fence to get in. Close shave doesn’t even begin to describe it…
Friday 18th December
Wake early feeling like I never slept. By the time I’m up and about, Gary, founder of the agency I’ve worked with since July, has just finished co-ordinating the placing of 9 nativity cribs around London at key locations. The cribs represent the 9 safe beds available for the thousands of UK children living on our streets because they’re afraid to go home. The charity devoted to helping them is called Railway Children and I devised the stunt and wrote an ad campaign for them which we shot last week. Click at the top of the page or visit http://www.youtube.com/watch?v=1SNFMUCrPqg to view it. National and local newspapers, various TV and radio stations were all interested in the story, but last night’s snow is set to dominate the news. Shame. Josh wakes before nine for once and is desperate to play Playstation. His teacher is coming early and he wants to squeeze a game of two in before knuckling down to work. I give in at 10am and he has an hour while I try to make the room more functional for Claire’s arrival. The trains are running despite the weather and I walk down to Farringdon to meet Claire. We catch up on all things Joseph and Josh over a shared Bento box and a warming Miso soup. It’s a rare chance to see each other without interruptions from doctors, bleeping machines or children and it’s priceless. Back at the hospital Claire goes through the same gauntlet of emotions that I did being back on a ward where we spent so much time last year. She can’t believe how stiflingly hot the room is and it starts to draw her cold out within a few minutes. Leave before the doctors appear, not knowing if they’re snowed in at home or deep in discussion about Josh in a meeting room. My train home is only delayed 6 minutes which is perfect as I was 5 minutes late – weighed down by 2 shoulder bags, 2 carriers bags and a grossly obese blue suitcase. On the train, I comb the Evening Standard for articles on the Railway Children, but it’s lost out to 5 pages of snow and Davina McCall having to sleep in her car which is obviously far more important than children as young as 10 sleeping on our freezing cold streets every night. Have to be content with several quotes from politicians on the subject, a couple of spots on the news and radio and a few thousand tweets flying around the country. The front page of Metro says lawyers racked up 700m in the last 5 years from NHS compensation cases, a sum that could have paid the salary of 23,000 nurses. What is wrong with this country ? Unpack at the other end before picking up Joseph from a school friend’s house again. Taekwondo is on, despite the snow, and I’m privileged to see Joseph and his martial arts buddies side kick, chop and block their way through a hastily re-written Taekwondo version of ‘The Twelve Days of Christmas’ sung in true karaoke style by the class instructor. Joseph bangs his knee on the last verse doing the 11 flying kicks required and I have to carry him home, picking my way carefully over the icy patches like a Kung Fu master walking on rice paper. No new news from the hospital and I crawl into bed next to Joseph just before midnight. He’s snoring contentedly. Half an hour later I’m willing to bet I was too.
Saturday 19th December
Not a great night for Claire by all accounts. Trouble is, it’s so hot in Josh’s room but freezing cold in dirty utilities where you wash and weigh his wee bottles at 2am. Not the best way to try and stay healthy. Plus he’s up around 7 or 8 times a night so you never get a great night’s sleep. Josh’s temperature is hovering on the brink yet again too. At home Joseph and I venture out in the snow to Petts Wood for food, football cards and a haircut. Everybody we know is asking the same question at the moment – will Josh be out for Christmas ? We wish we knew. An answer either way would mean we could make plans, but it’s unlikely we’ll know for sure before Christmas Eve. Back home it’s too cold to go anywhere other than the back garden for a snowball fight. Avoid hitting Joseph for 15 minutes whilst he bombards me, but unfortunately he brushes against a snow-covered bush and is buried beneath the resulting avalanche. It ends in tears but I’m happy to retreat to the house to feel my fingers again. A letter arrives from Transport for London to tell us the congestion charge will be 100% free due to our blue badge status. Perfect timing as we’ll probably have to drive into London to pick Josh up. Public transport is a no-no and the thought of a taxi driver coughing and spluttering in the front of his cab as he tells us he once had Les Dennis in the back isn’t exactly reassuring either. Claire calls to let me know she’s responded to a letter about our carer’s allowance being stopped by pointing out that Josh’s treatment requires we stay with him in hospital. The minimum requirement is 35 hours a week. We’re doing 168 between us. Hard to imagine how they can argue against that point, but I’m sure they’ll try. With Joseph in bed and the third load of washing in the machine, it’s time to start wrapping the boy’s Christmas presents just in case we don’t get another chance. It’s exciting to see what Claire’s bought them and hopefully vice-versa. So far there are no duplicate presents but I haven’t opened all her bags yet…
Sunday 20th December
For those of you who haven’t seen them, this year’s Christmas lights on Regent Street are based on the new animated film version of A Christmas Carol. Our ghost of Christmas past is Alex. In our hearts and minds all year round but never more so than now, as everyone’s thoughts turn to families, togetherness and presents. Visiting his memorial on Christmas day before lunch has become as much a part of Christmas as the Queen’s speech, Top of the Pops and The Wizard of Oz and it gives us a few precious moments to step away from the festivities and think about what really matters - and it ain’t the size of your presents or how many you get. The ghost of Christmas present ? The here and now is unclear but wherever we are for Christmas we’ll make the best of it. Let’s just hope we don’t end up staying at GOSH simply because they’re too short staffed to discharge him in time, which is a real possibility. The ghost of Christmas future is the scary one. The one I’d never want to meet. Whatever lies ahead, I’d never want to know. If we’d had a glimpse of what lay in store for Alex it would have been unbearable. Hope is a wonderful gift that you won’t find on the high street and can’t order online. Sorry, not sure where all that suddenly came from but it’s out now, so I’ll move on. Joseph is sitting up in bed next to me while I type this and desperate to go downstairs and open his advent calendar. The morning is quiet and relatively peaceful. We set off for Bromley and park at Claire’s mum and dad’s. Her mum’s in and it’s good to have a chat as it’s been a while. She offers us lunch and Joseph stays and watches TV while I do some last minute shopping on my own. The pavement’s are like skating rinks so it’s just as well. Papa returns at the same time I do and after lunch and a welcome glass of wine, it’s back home to play and then off to church for a special Chistingle service for children. For those of you who don’t know, a ‘Christingle’ ( Christ- light) is an orange with a candle in the centre and cocktails sticks sticking out the sides with sweets or fruit attached. The orange represents the world, a red ribbon around the centre Christ’s blood, the 4 sticks are the seasons, the fruit the food of the world and the candle is Jesus – light of the world. We’re warned they were made last week and the oranges are rancid. Joseph’s is particularly rotten and won’t stand up properly but we manage to get through the service without burning St James’ down once it’s lit which is a relief. At refreshments afterwards Joseph tears around the hall with a few of his school friends and tells random parents about his 4 girlfriends. Respect. Bath and bed for Joseph once home, more present wrapping for me. Joshua is asleep by 6.30pm but has had a good day according to Claire, who’s had a tough, lonely weekend in there. Lots to sort out at that end this week to try and get him home on time. Fingers, toes and eyes crossed that we manage it.
