Monday 26th October
And so, after another weekend at home playing single parent, it’s back to the day job – working 24 hour days, 5 days a week without pay. Tempted ? Postal applications accepted once the latest strike’s over or contact your local job centre. Of course, the reality is the perks far outweigh the negatives with the biggest bonus of all being spending so much time with our boys. Guess there really are some things in life that Mastercard can’t buy.
Manage another lie-in as I persuade Joseph to watch TV in bed on our new 32 inch HD Ready Toshiba Plasma TV. I say ours, but it’s actually stolen property - left outside our back gate last week presumably by a thief worried about being caught in the act. Claire’s reported it and if nobody claims it in 30 days it’s officially ours. Drop Joseph at his grandparents and make train with seconds to spare again. Avoid the weekend football results so I can watch and enjoy Match of the Day with Josh. He’s in good spirits again – even though United lose. The biggest talking point at the hospital is that for the second day running there is no heating and, more importantly, no hot water. It’s a joke. Everyone is becoming very irate as it makes a mockery of all the precautionary measures being taken on the ward and puts all the children here at risk. Josh will more than likely develop rashes or far worse as a result of not having the daily bath that is a strict part of the BMT protocol. The nurses are up in arms too, but the only feedback we receive when we make an official complaint is that it’s been noted. Josh is cold in bed and insists on wearing his slipper socks and a long sleeve t-shirt. Surely there’s a plumber in the house ? I have no idea what the problem is but the threat of inserting a wrench where the sun don’t shine just might hurry things along a little…
Tuesday 27th October
Day 42 in the Big Brother house and still no hot water. The housemates are close to mutiny. Joking aside, that reminds me that during our stay last year around half a dozen Big Brother housemates descended on our ward at 11pm one night, presumably just before hitting a nightclub given the amount of flesh and Lycra on display. Nobody knew who they were or why they were there. Fortunately it didn’t make the tabloids the next day, although I’m sure that was the intention. Given the ward was full of babies and toddlers, you wonder who on earth thought that one up – probably the same person now in charge of the plumbing. Josh was early to bed and late to rise this morning so we both had a reasonable night although he’s struggling with tummy pains and sleeps most of the day. No teachers as it’s half term so don’t manage to venture out to eat all day. Just as well I topped up my layers of fat at the weekend. My Vodaphone dongle is proving completely useless since we moved to Fox ward and struggles to find a GPRS signal let alone a 3G. May have to switch to 02 as unable to catch up on work without leaving the room which is nigh on impossible when Josh is unwell. Bit of a downer all round today really, although the euphoria that greets the news that the boiler has been fixed brings a welcome smile to our faces. After a good old hot soak and a full body DiproBase massage, Josh is up for watching Agent Cody Banks 2. He only lasts 30 minutes before asking to go to sleep. Unsure whether this is a result of feeling below par or a reflection of how bad the movie is.
Wednesday 28th October
Wake up regretting asking a student nurse to put the room monitor on last night as she must’ve pressed the wrong button by mistake. This means that instead of them hearing the alarms when they go off, I can hear everything they’re saying out in the corridor. Trust me, it wasn’t fascinating enough to warrant listening to at 3am. Josh is not himself again today and as I’m about to leave for a meeting, he asks me not to go. I rearrange and read The Demon Headmaster to him instead. By the time I’ve started the second book, he’s ready to go to sleep again. Like to think it’s down to the fact the room hit 40 degrees today rather than my soporific voice. Nobody knows how to turn the heating off on the ward now that it’s finally working again, but they do manage to find a brand new fan which does its job and cools him down. It has to be new otherwise the breeze would blow dust from the fan blade straight at him which could set his recovery back a few weeks. Having written about the BB crew last night, I read in the paper that the X Factor finalists visited the hospital yesterday. Unfortunately they weren’t allowed onto our ward – presumably Jamie’s afro was considered a fire hazard or they couldn’t find a translator for Stacey. Either way, it’s a real shame as Josh would have been deliriously happy as he’s a huge fan - although he later tells me he might have mooned at the twins. Tidy up a few loose ends for work while Josh sleeps most of the day. It’s so sad to see him so unwell. There’s no pain, just nausea. When he says he wants to cry he feels so ill, I tell him to let it all out but he’s worried that once he starts he may never stop. Manage to talk him into getting out of bed and bath him but even the promise of watching The Simpsons has no effect and when he climbs back into his freshly made bed he’s asleep within minutes.
Thursday 29th October
‘6 wee bottles standing on the floor, 6 wee bottles standing on the floor, and if one wee bottle should accidentally fall…’ there would be a right old mess - which is exactly how the day begins. Josh was number one-ing for England last night when we had the student nurse who thinks carrying urine is beneath her on duty. This leads to a backlog that she then knocks over checking his pump. She pats at the resulting mess with a couple of paper towels but doesn’t think to follow up with the disinfectant wipes, so I do it once she’s left. ‘Mama Mia !’ as Joseph and Meryl Streep would say. Generally we take the bottles and bed pans out ourselves with his name written on them. We’re not alone in doing this and the utilities room is often packed with similar receptacles with various names scrawled across them. We often administer his oral drugs through his gastrostomy peg too as we’ve had years of practice and are glad to help out. This was once taken too far when a nurse woke Claire up at 5.30 in the morning and shoved them rudely into her hands.
Josh is in better spirits today when he wakes up although he is physically sick soon after a sip of water. He manages to keep it off the sheets so I only have to worry about the floor. Vomiting is pretty much second nature to him now so he always manages to control it. At home he always held his nasal tube when throwing up so it didn’t shoot out across the room ! When the doctor comes in she tells Josh he is officially the cheeriest patient on the ward and he shines with pride on hearing this. A few minutes later we have a visit from the ward’s resident gay Afro-Caribbean maintenance officer who is checking everything is working. I tell him the dodgy TV ariel needs fixing before X Factor on Saturday. He tells he overheard me reading to Josh and thinks I have such a lovely voice I should be on the radio. I’m flattered but make it abundantly clear I’m only available for family bookings, just in case he’s after a bedtime story. The rest of the day drags as Josh drifts in and out of sleep – one minute a bundle of energy, the next virtually comatose. The senior play therapist pops in to see him but again he doesn’t want me to leave – a sure sign he’s not 100%. After telling me I can go out when he’s asleep, I dash to freedom and shove a mushroom and cheese omelette down my throat the moment his eyes close. Later I enjoy a rare uninterrupted bath as Josh plays on his DS for half an hour lying on my bed. Generally he calls out as soon as I climb into the basin. It’s often because he’s having bowel trouble, which is fair enough, but last week I came rushing out with a towel round my waist when he yelled ‘ Dad, come quickly’, only to find him with a nurse watching a particularly funny moment in The Simpsons he wanted me to see. D’oh. Never falling for that one again.
Friday 30th October
More mistakes on the shop floor. Luckily I spot that the sterile bottle of water a health assistant brought in for Josh was actually Diorylite meant for another patient but in an identical bottle apart from the label. It’s basically a strong laxative and wouldn’t have harmed him, but given that he was going all night anyway, it certainly wouldn’t have done him any good. To be fair, the standard of care has been pretty darned good this time around compared to some of our previous experiences on Rainforest ward and the private ward – Kingfisher. It was there that the play specialists handed Easter eggs to all the children who were nil by mouth, and when told of the problem covered themselves by saying they could save them for when they were feeling a bit better. A bad night for Josh with a lot messy pull-ups in the early hours. Nothing to rival the 26 bouts of bloody diarrhea he managed in a day when he was in his prime at Kings Hospital, but I still needed to change my own pyjamas twice just from changing him. He’s asleep when Claire comes for changeover but stirs when he hears the rustle of his weekly football magazine as it exits her bag. One of the hardest swaps we’ve had as he is so down and just seeing Claire so briefly only serves to remind me how much I miss her. Then it’s off to the station with Claire’s sister dropping Joseph off at home as soon as I’m back which saves me a trip and is greatly appreciated. Joseph is the only one in the family with a social life these days and I take him to a magic party in Bromley and then drop him off at a school friend’s house for a sleepover. Then I’m home and it’s a big old empty house. Bung the weeks washing in the machine then make myself something to eat and read the paper. It appears that the security manager at GOSH has swine flu and may have passed it on to the X Factor finalists. Nobody seems too worried about the children he may have come into contact with but he was with the twins the most and Rachel gave him a hug. Good work fella ! Hope it’s nothing serious but with a bit of luck they’ll be too ill to sing tomorrow…
Saturday 31st October
Happy Halloween ! Strange waking up without one of our boys in the room. Takes me a few seconds to remember Joseph isn’t even in the same house. Pick him up at 10am and it sounds like he had a great time. Spend the day playing while we wait for Argos to collect a faulty footstool. By 5.15pm it’s dark enough to call on one of Joseph’s girlfriends who is meant to be Trick or Treating with us. Olivia at-the-bottom-of-the-garden, as she is affectionately known to distinguish her from another Olivia, is unfortunately too scared to join us. Don’t think Joseph’s skeleton pirate outfit did much to alleviate her fear. Undaunted, Joseph rings the bell of every house with a pumpkin in the window and manages to amass a fair collection of candy and chocolate. Along the way we bump into 9 witches, 4 skeletons, 3 ghosts, 2 devils and a 4 year old girl who appears to be dressed as Amy Winehouse. When we call the hospital Josh is asleep and the news is that he may have caught a norovirus which would explain the vomiting. After a couple of spooky bedtime stories Joseph is also fast asleep and dreaming of ghosts and ghouls. Hear a rum and coke calling me downstairs but have a terrible feeling we’re out of rum. Now that would be really scary…
Sunday 1st November
Josh graciously says he’s happy for us to see ‘Up’ at the cinema without him so we head for Bluewater and just make the 11.15am showing in 3D. Despite having to move seats just as the movie starts because a family of 8 are sitting in the wrong seats on the wrong row, we both really enjoy it. Joseph doesn’t even grumble about wearing the glasses as he thinks he looks like Harry Potter. Halfway through he climbs on my knee and I sniff his hair for the rest of the movie – if you don’t have children this will sound weird but if you do you’ll understand. We used to do the same with Josh and Alex. When Alex died we kept a lock of his hair, it was the hospital’s suggestion and I’m so glad we did it. It wasn’t to sniff, it was to treasure. We haven’t looked at it for years but it’s there and it’s real and it’s proof he lived and was loved for nearly 3 wonderful years. He had such beautiful blonde locks, just like Joseph… Speaking of hair, Josh’s is starting to fall out now from what Claire tells me. Sounds like plucking it has replaced bogey munching as his number one pastime. Claire has a roll of sticky tape to remove the strands from his pillow before they start to irritate his skin. He is feeling a little brighter today but still suffering. I’ll be returning tomorrow for the rest of the week. Cousin Lucie, Josh’s third carer, had volunteered to stay with him tomorrow evening so Claire and I could have a night at home together but it’s simply not possible given the vomiting and diarrhea. Guess I’d better get the trusty blue suitcase packed.
