Monday 21st December
Fast food isn’t good for you. Jamie’s been lecturing us for years and the message has obviously got through to the staff at McDonalds opposite Holborn station. Can’t think of any other reason why service could possibly be so slow. It’s happened before in there but that was a Sunday night so they could be forgiven. Today it’s a Monday lunchtime when Joseph and I pop in before turning up at the hospital and we’re told French fries will be 20 minutes. It would be quicker to get them from France – unless you went by Eurostar obviously. The inclement weather meant that there were no trains in or out of Farringdon this morning so Joseph and I plumped for Victoria instead and tubed it. Joseph was in fine form and yabbering throughout the journey and asking questions about everything he saw. Best moment was when we passed a sub-standard busker on the underground and he piped up in a loud voice ‘That’s giving me headache. She’s just screeching, Dad.’ Out of the mouths of babes. We arrive on the ward just as Josh is phoning to see where we are. The boys sit and play Playstation together while Claire debriefs me. All the gastro doctors came round this morning but stayed outside the room as only a couple can fit at any one given time. There are three watchouts. How Joshua tolerates his feed as we push it up again before going home. His cyclosporin levels which are low, even though he has developed severe shakes as a result of the drug. And last, but certainly not least, his Urea levels which are high and a worry as far as his kidney functions are concerned. This is further complicated as his volume output isn’t as high as it should be given his volume input. This becomes less of a concern when Claire points out that nobody has taken out or weighed the two full wee bottles that have been under his bed since early morning. Problem solved. One of the nurses books a car for Josh and I on Thursday at 10am to take us home – realising transport will be difficult to get ad hoc on Christmas Eve. We now have a date and time to aim for in terms of discharge papers, admin and collating and checking Josh’s drugs. Am not filled with hope just yet, but at least know the plan and can remind people to stick to it. Josh’s bath passes without incident as we enter the room two minutes after the cleaner departs. Today’s nurse is willing enough but not necessarily able. She’s just come down from Scotland where they obviously have a completely different health service as she neither knows how the blood pressure machine works or how the bed pan washing machine washes bedpans – not that it does anyway. Claire had to talk her through both things this morning. Out of the blue, a work colleague appears at the window bearing gifts just after we return to the room. Lovely to see her and Josh now has a mini-Christmas kit to celebrate the 25th with whether it’s here or at home. Communication has broken down again on the ward as this morning Claire was told they would push Josh’s feed up to 120ml an hour but it’s not written in the notes and the nurses are planning to leave it on 100ml. I tell them we’ll take responsibility and to go up to 110. Josh fades fast as the day goes on and wants to go to sleep at 7.30pm. I stay up to check the feed goes up the required amount and then retire behind the curtain with the DVD player, headphones and an almost inedible cheese and tomato toastie from downstairs.
Tuesday 22nd December
My early night proved earlier than expected as I fell asleep before watching anything and woke only at 10pm, 1am, 3am and 5am - which is as good a night’s sleep as you can ever manage in here. The bedpan situation is beyond a joke and I have to scrub two in the early hours of the morning to make up for the inefficiencies of the machine. The nurse on duty is old school and tells me that they used to have to scrub them all by hand ( not literally, hopefully) before they were allowed home. When I wake at 7am she has cleaned all the remaining bedpans properly and lined them up like rotund blue soldiers on parade for me to inspect. They pass with flying colours. With Josh still asleep I slip out to the kitchen for a drink as it’s still so hot on the ward I’m in danger of dehydrating. For some reason on Rainforest the supply cupboards in the kitchen are kept locked at all times. This means that if anything runs out – like the orange squash did yesterday – you have to rely on the elusive housekeeper to spot it and replace it. This rarely happens. Why they can’t let parents help themselves like on other wards I have no idea unless they’re worried we’ll clear everything out and set up a market stall on Leather Lane to make a few bob. Now, there’s a thought. Make my way back to Fox ward to speak to Nikki, who organises discharge, or check-out as I like to refer to it, here at Hotel Hospital. She is back from a 3 week holiday and nobody has left the ward since she went because nobody can cover her job and do their own without being so overstretched it would be dangerous. I hand over a gift for her, not as a bribe but as a thank you. She scares the life out of me by declaring that Josh is not scheduled to leave until the New Year and that there is not enough time to get everything organised before Christmas. Trying not to go off on one, I collect myself and point out that we have feed, pumps, bottles, syringes and Hickman emergency kits at home on our own personal ward, formerly known as Josh’s bedroom, and that we are already trained in drawing and administering the majority of his drugs. Nikki tells me this will help and that she’ll come back to me. I prepare Josh and Claire for the worst. It’s difficult to say who takes it the most badly. True to her word, Nikki returns an hour or two later to tell me we should be fine for a 2pm departure time on Christmas Eve. I breathe a sigh of relief but don’t get overexcited as there are 500,000 Eurostar passengers who thought their departure time was last Friday that still haven’t gone anywhere. She will contact our local hospital and the local community nurses. Josh and I will need swine flu jabs at our local GP asap. We will need to return next Wednesday for an outpatients appointment. I fill her in on the issues facing BMT patients going onto Rainforest and how they should best address them to avoid getting sued or physically attacked by irate parents in future. Josh is looking well when he wakes up and his blood results are good. A meal arrives for Josh today which I send away as Claire was told he should not have any food until after his endoscopy in the New Year. When the play specialist arrives to make and paint plaster of paris letters with Josh, I leg it down to Chancery Lane to WH Smiths. I’m taking a book back for a refund, buying a new series of football cards for Josh and cashing in a £2.99 voucher from McDonalds for an Alvin and the Chipmunks 2 book for Joseph. For once there’s someone behind the counter who listens, understands and then does everything asked of her without a hitch. Promote her to manager immediately, I say ! After that I pop into Superdrug to buy wipes for Josh. Every time I have done this anywhere in Central London it’s the same. The baby section is either non-existent or tiny and tucked away where not even the great Sherlock Holmes could uncover it. Does nobody living in central London have children ? Are they all so upwardly mobile that they have Chihuahuas instead ? It’s a complete mystery to me. After that it’s on to Sainsbury’s for chocolates for the Rainforest nurses which leaves me with no time to find anything Claire might like for Christmas, to go with the two presents she already knows she’s getting because she asked for them. The only place near enough to sneak out to tomorrow is a Romanian charity shop opposite the private wing of the hospital and I’m pretty sure Claire wouldn’t want a second hand woollen shawl or a boxed video set of Jean Claude Van Damme movies. The bathroom has been cleaned while I was out and Josh and I march straight in the moment I’m back. The boiler has been fixed, but the water is still only lukewarm. Briefly see the dietician afterwards who sent the food up today because nobody told her the plan had changed. Surprise, surprise eh, Cilla. We discuss what the feed should run at tonight and she’s happy that we increased the rate last night to 110 ml an hour. Nip to the kitchen while Josh reads to discover a full orange squash bottle has suddenly appeared. This isn’t as exciting as it sounds as there is no drinking water on the ward whatsoever now due to a broken tap and I’m told to sneak over to Fox ward to top up my flask. This is the equivalent of driving from London to Edinburgh to buy a book of stamps but I go anyway as there’s no alternative. Then it’s off to the gym for Physiotheraphy. Josh will have his final assessment tomorrow at 1.30pm. This later changes to 11.30am as, contrary to what we’d heard, he now has endoscope and colonoscopy procedures booked in for early afternoon. This in turn means bowel prep today to clean his bowels out which means no feed tonight whatsoever. It also means sneaking back to Fox again once Josh is asleep to pick up a supply of clean, recyclable poo-stain free bedpans as I prepare for the storm before the calm.
Wednesday 22nd December
No real movement overnight as far as clearing Josh out for his colonoscopy is concerned. This is often the case and has led us to believe that there may be a bowel functioning problem outside of his disease. The doctors tend to ignore us on this – maybe they’re right. Place your bets now. He’s awake before 8am and starts reading a Harry Potter book about a prisoner – very apt given our current incarceration. While he’s doing this, I have my discharge green talk which is straight forward but very thorough and helpful. No real surprises. Community nurses on a Tuesday at home. BMT outpatients once a week on Wednesday. Local hospital in case of emergency. The list of drugs is even longer than I thought but we’re familiar with most of them and know enough to ask for a month’s supply of sodium bicarbonate to dissolve one of them in as it’s almost impossible to get hold of in the outside world. We need to continue with Josh’s daily bath but can drop the Corsodyl mouthwash unless he particularly wants to continue with it. Let’s safely assume that’s a no. Friends can come if they’re well but he shouldn’t go to their homes. Please note this is BMT protocol and not that we think our friends don’t dust properly. We can go to the cinema in a month or so as long as it’s a matinee outside of the school holidays but school, restaurants and public transport are out for at least 6 months. Once I’m back in the room things start to happen pretty quickly. His physio assessment can’t go ahead as it clashes with his colonoscopy and they can’t switch it to the morning. A nurse stands outside the door with a Magic set that was a present for a child that’s too young for it and a cleaner though Josh should have it. A few minutes later someone arrives with a cuddly compare the meerkat.com toy that Harrods have donated to the hospital. It’s very cute but would appear to be substandard stock as it should say ‘ Simples’ but instead emits a cry like a castrated dolphin. Yes, I do know you can’t castrate dolphins but you know what I mean. Finally the mother of a young child who used to be on Rainforest and is rude, demanding, self-centered and cannot speak understandable English has been referred to me to answer her questions about bone marrow transplants as none of the nurses know enough. Once I say I’ll try and oblige she paces up and down outside my room like a Gestapo interrogator, flashing a chilling smile one minute then gesturing for me to get a move on the next. I’m taking a work call at the time by the way, so I’m not impressed by her attitude and pretend to be talking long after Gary has hung up in the hope she’ll give up – which she does. With little or no bowel movement on Josh’s part I broach the subject of an enema but am met with blank stares. When I ask if there’s any way of knowing how much still needs to come out through the weight of what he’s passed compared to his input I’m met with blanker stares. In the end he doesn’t have one. At 1.20pm we leave the ward for his 1.30pm scope. The lifts on Rainforest always take forever and today is worse than usual. We arrive 7 minutes late to be told that someone else has taken Josh’s slot, as they thought he wasn’t coming. I am so not happy about this. It’s not like he’s an outpatient marooned in the snow on a train outside Watford Junction or on a bus stuck in traffic because of another broken water pipe in the Blackwall tunnel area, he’s on his way from one ward to another in the same hospital. Did they think we’d done a runner and fled the country ? Wearing a hospital gown that flaps open at the back and wheeling a pump stand – how far did they think he’d get in the middle of December in sub-zero temperatures ? Dear Lord, give me strength. When I ask if he should be waiting with the other patients given his condition they tell me they don’t know but don’t think it’s a problem. I ask for a better answer than that. Eventually one of our favourite nurses, who used to be on Rainforest but moved just before we left last year, pops her head round to tell us it’s fine and standard procedure for BMT patients. Question answered, crisis over. At this point Josh is tiring having walked all the way over there and is slapping his own face to stay awake so he can be put to sleep. The next thing is a discussion about his enema and when he should have had it. Just before I lose it on this subject it becomes irrelevant as his latest bloods are just in and his platelets have dropped. This means that when they do a biopsy, the blood might not clot and they can’t go ahead with the procedure without a transfusion. We return to the room where Josh does his football cards, disappointed not to be feeling drowsy. I worry he’s becoming addicted to anesthetic. For the next hour, it’s a waiting game as there’s no match for his platelets at the hospital so it has to come from outside. If they don’t arrive in an hour, he won’t have a scope – despite being taken off his feed for 24 hours and having laxatives by the truckload. This shouldn’t affect us going home as the colonoscopy shouldn’t have happened until January, they just sprung it on us today on a whim, as far as I can make out. Josh carries on reading on the bed, still in his gown and still without either his feed or his medicines which have also been stopped for the scope. The consultant who was due to due to the procedure comes to see us to reiterate why they didn’t go ahead which makes perfect sense. We will go home tomorrow. Hoorah ! I thank him for everything the Gastro team have done for Josh, it’s easy to forget how groundbreaking his treatment has been and how many more patients can benefit from his case in years to come. BMT is just one of several fronts where the gastro department is looking to expand their work and hopefully see the fruition of many years of study and theory. He is quite rightfully proud of their achievements and accepts that protocol isn’t perfect yet but they will rely on patient and parent feedback to iron out any creases. As he leaves, I suddenly remember Claire telling me that platelet transfusions only happen when levels are below 10 and Josh is 45. I catch him in the corridor and we agree that he should not have a transfusion now they aren’t operating. With Josh back in more dignified apparel and happily re-enacting the Champions League on Playstation, I toddle off down the road for one last mealtime alone with a newspaper. There’s a chill in the air and it feels exciting to be coming home and saying goodbye to all this. After a celebratory omelette, I make my way back to Rainforest via the basement as they’ve shut off the main walkway for renovation – not before time. On the ward our drugs have arrived and I check them carefully before going through each one that’s due, drawing it up and administering it. This is something Claire and I can virtually do with our eyes shut, although that would just be stupid if we ever tried it, so we don’t. There are a couple missing but for good reason as the dosage will be set after we get today’s results back in the morning. Josh and I sit back and with a contented sigh watch the last of the weekend’s football with me safe in the knowledge that everything is in place for tomorrow’s departure short of a sudden relapse from Josh. Finish the day feeling so optimistic that I find myself expecting Everton to beat Birmingham even though I watched the match on Sunday and know it was a draw.
Thursday 24th December
Twas the night before the night before Christmas and all through the ward, not a creature was stirring…except for me packing our now legendary blue suitcase. Having finally mastered sleep here in the last few days, I had to keep myself awake somehow until 11.30pm last night to give Josh his last lot of meds. My handy pocket size chart tells me that he is now on 28 a day plus umpteen flushes of sterilised water. Staying up is good practice for when we’re home and have to change feed bottles over around midnight. Ah yes, the fond memories come flooding back. Having hardly slept, as I’ve suddenly developed tooth ache for the first time since I used to leave the ones that fell out under my pillow, I have no problem getting up just before 7am to prepare, draw and give Josh his first lot of morning meds too. Josh is awake around the same time and excited about going home. I left out enough entertainment to last us through the day and Josh chooses to finish his Harry Potter book before going back to sleep until 10pm. The only thing that can stop us leaving today, bar a snowstorm or lack of transport, is Josh developing a temperature. He’s often threatened to do this in the last few weeks but always stopped short of 38 degrees. I’m tempted to chuck a few ice-cubes under his covers just to make sure it doesn’t creep up again. There’s so much to do before we leave that I can’t help wishing Claire was here as she’s so much better at remembering things. I check all the medicines use by dates and put the ones I’ve opened in a separate bag to the ones I haven’t. I’m still missing two and will need sterilised water so I can give his next lot of meds as soon as we’re through the door at home. The Playstation needs to be returned to Fox along with the bedpan and bathroom basket. There are DVD’s to go back to the play specialist, the deposit on the key card to collect, the TV remote control to return, appointments to make for next week, the occupational therapist to track down and the dietician to interrogate. Oh, and we need a fork lift truck to carry all our stuff down to the car. Everything falls into place fortuantely. Everyone who’s meant to visit us turns up when they’re meant to. The occupational therapist hasn’t had a chance to write her assessment but has compiled a set of exercises Josh can do. The dietician has written down the recipe for his feed and packs us off with two further supplements that will reduce his protein but not at the expense of anything else. The play specialist turns up with presents from Santa for both Josh and Joseph. Only the Gastro doctors can’t be found. One eventually turns up 3 hours late and a little bewildered. She is led around the ward by a nurse meeting and greeting patients she’s doesn’t recognize and coming out with inanities, like the Queen on a state visit. She pops her head round our door and asks if we have any questions. Short of how many sweet sherries she had at lunchtime I can’t think of any. Josh ventures out a little while later as there’s nobody around and gives the nurses their thank you present. Leaving is strangely happy and sad at the same time but more happy than sad. When we’re told the driver’s arrived at 2pm, Josh whoops and hollers and sets off for the lift immediately with me and two nurses in tow like trained pack horses. They see us to the ambulance car and hug us goodbye. As we set off Josh tells me it’s the happiest day of his life. Like a pale, slightly less-wrinkled version of ET he phones home to let Claire and Joseph know he’s on the way home. The journey is relatively painless with just one snarl up near Lewisham and we’re outside the house in less than 90 minutes. Joseph runs to the door beaming and we throw ourselves into a huge team hug. The boys go bananas running around and smacking each other’s bottoms for a good half hour before we settle them down. They sit and play Playstation together whilst Claire and I unpack the last 4 months of our lives and store it away. After I’ve done Josh’s meds we take him upstairs for a bath. A nice, warm deep one. Joseph watches him undress, staring at the various tubes and lines protruding from his body. ‘ Wow, you look like a robot, Joshie !’ he exclaims in wonder. Josh snuggles down in bed as I connect his feed pump up and pats me on the head with his free hand. His other thumb is glued inside his mouth. Within seconds he’s fast asleep with a big smile on his face. Claire and I pour ourselves a glass of wine and sort out presents to put under the tree. No doubt Santa will add some more once we’re all in bed. It’s been a magical day but somehow it doesn’t feel Christmassy at all, despite the house heaving with gorgeous decorations and looking sensational as always. Coming home was our Christmas present and tomorrow, by comparison, will be just another day - albeit with presents and festive music blaring from the radio.
Friday 25th December
Merry Christmas to all ! Hopefully yours didn’t start at 3am like ours. To be fair, I was fast asleep, but Josh was awake with tummy trouble and Claire was up with him. He’d have gone straight back to sleep but the basketball shaped High School Musical clock by his bed was 3 hours fast so he was convinced it was time to go downstairs and see if Santa had been. Claire persuaded him to go back to bed where he read rather than slept until his next bout of diarrhea at 6am. Joseph woke around the same time and I was up soon after. We knew Father Christmas had been because of a big snowy footprint on our hearth. It appears we share the same shoe size although his prints were much heavier than mine as he’s so overweight. Hardly surprising as he ate all the biscuits and drank the milk we left by the fireplace. The reindeer scoffed the carrot too. Present unwrapping was a tale of two brothers. Joseph ripping and tearing everything open straight away then moving onto the next parcel, Joshua much slower and more considered. We have a good day. None of the arguments the papers tell us mar the average Christmas day celebrations but a few wobbles like everyone else. Joseph had a little tantrum after he returned from church but managed to snap out of it. Josh was a bit low key, possibly expecting something Santa didn’t bring because it was almost identical to what he already has. We didn’t go to Alex’s garden. Claire and Joseph went yesterday but we decide it’s best to stay at home given Joseph still isn’t feeling well and Josh’s condition. Claire’s pile of presents can hardly be called a pile as it’s just the one, although she knows what her second present is and it’s a biggie. In truth, nothing that happened today could hope to live up to the excitement of coming home on Christmas Eve. Lunch is wonderful, although far from a family affair with Josh opting not to watch us eat and staying in the other room sorting his football cards. A starter of salmon and prawns served on a real seashell is delicious but nearly cracks my teeth as I thought it was a fancy cracker and was seconds away from biting down on it. Roast duck is a welcome change from turkey and as good as anything I’ve ever tasted. Things settle down in the afternoon and by the time Claire’s mum and dad arrive, the boys are both pretty chilled and enjoying the day. After a few games and a bite to eat it’s suddenly got late. Joseph is the first to ask for bed. Josh follows soon after. Both are asleep as soon as their heads hit the pillow. Claire and I flop down and watch the Royle Family – our one concession to Christmas TV apart from Top of the Pops in the afternoon that saw both boys showing off their best dance routines. Speaking of routines, preparing meds and feeds is more time consuming and draining than ever but will no doubt get easier over the next few days as it becomes second nature again. It already feels so long ago that we were in hospital that it’s like a dream. We all sleep soundly and peacefully.
Saturday 26th December
And so it’s time to say goodbye, dear reader. After 4 months of sharing every facet of our lives with you, it’s time to close the laptop on our relationship - for what is a hospital dad without a hospital ? Today was a day of playing games, group hugs, laughter and togetherness. Josh is still very tired and slept for several hours in the afternoon. It’s wonderful to see the boys playing together again but Josh is strangely muted and withdrawn and it will still be some time before normality returns, although who’s to say what normality is anyway ? Josh and I will have our swine flu jabs next week. His various drugs will continue for 6 months to a year. His hair should start growing back over the same period. Our trips to Great Ormond Street will continue for 6 months but if all goes well will soon switch from weekly to fortnightly. Our community nurse visits will go on indefinitely. Occupational therapy and physiotherapy will be ongoing. Work on rectifying his talipes will begin in February. Realistically, anything but home schooling is out until May 2010 at the earliest. After a year Josh’s immune system should have built up to the degree that he can have and will need all his childhood jabs again. By that time we should have more of an idea of whether the transplant has helped his condition or not. You never really think of the long term effects of living in hospital but they're immense. Josh has forgotten what a normal life is. Virtually nil by mouth for 18 months, Central lines to his heart, permanent nasal tubes, pegs protruding from his stomach, solitary confinement, 20 hour infusions and enough blood taken to fill a Transylvanian castle. School is a dim and distant memory too. After being in hospital for 8 months last year, he’d forgotten where and what home was and didn’t even recognise our road or front door. This year wasn’t quite so bad, but he’s still found coming home confusing and disorientating. Joseph, our youngest has forgotten what it’s like to have a brother to inflict Chinese burns on him, stick his tongue out at or share toys, games, baths and holidays with. He’s having trouble accepting that Josh isn’t always well enough to play and it’ll be a while before he’s used to finding two people in our bed when he comes running in at 3am after a nightmare. Claire has forgotten what being a wife means in the same way I can't quite remember what a husband does any more. Having got used to us both being at home this year, we’ve spent the last 4 months only seeing each other for 30 minutes twice a week and sharing rushed conversations that end with written notes on chores to be done at home or what Josh's blood pressure and inflammatory markers are doing. What 2010 has in store for us all is anybody’s guess, but that’s true for everyone. How many people will begin the year thinking how lucky they are only to experience shattering news that will change it forever ? How many will find deep despair replaced by hope and happiness they never thought possible ? We count our blessings that Josh is home and safe for now and that we’re all together again. Alex is never far from our thoughts and we hope and pray that Joseph will remain untouched by the immune disorders that have plagued our family over the last few years. Time will tell but we’ll remain optimistic because being anything else will get us nowhere. So it’s goodnight from me, Claire, Joseph and, of course, Josh and GOSH. Thanks for sticking with us and for all your support . I hope you enjoyed reading about our somewhat bizarre life more than we did living it, although it hasn’t all been bad by any means. Once the boys were in bed last night Claire and I sat down with a glass of wine and started watching ‘Flash Forward’ a TV series where everyone in the world experiences a blackout and sees a 29 second glimpse of their own futures. We saw the first episode when it was first shown in September and if we’d had seen where we’ve ended up now we’d have quite happily settled for that. Yep, quite happily indeed...
