Friday 18th February
And so half term looms. It’s Joseph’s last day at school and while other parents heads are filled with fun-packed days out or even holidays abroad, I’m afraid Claire and I are a little less excited. Half term means problems on just about every level. The biggest of these is that we still have no idea where we’ll be spending it. There’s been nobody looking after the sick children’s trust house this week, so it’s only today that we found out we can’t stay at the flat. Even though we’d been ear-marked for it, there’s a family from France living there until at least Wednesday. Half term at home with Joseph only brings home even more how different our lives are with two brothers and both parents spending it apart. Half term in London means spending evenings and, in all likelihood, most of the day apart too - even though we’d all be just around the corner from each other. If Josh isn’t well it means entertaining Joseph all day without the aid of friends, his own toys or books or even nice warm weather. This generally means having to spend money and, London being London, it generally means rather a lot of it. Josh is re-reading ‘Diary of a Wimpy Kid’ when I arrive and after asking ‘When’s Dad coming ?’ for two days, he’s so engrossed he hardly looks up. There’s no teacher this afternoon and, as it’s half term, there’s no school next week which means no real respite for whoever’s looking after Josh. If I’d known I’d have eaten on the way in, as it is I make do with a sandwich. Claire’s biggest news is that whilst we’re pencilled in for Tadworth on 1st March, if Josh still has norovirus he would have to remain in his room all the time – which completely defeats the object of being there. It’s a surprise as there was no mention made of this a month or so ago when he was about to be transferred even though they knew he had norovirus then. The norovirus issue is a strange one anyway as he needs 3 clear stool samples before they will confirm he’s free of it. By my count we’ve already had those, but by the hospital’s count we haven’t. Claire’s been under strict instructions to get another clear sample, but it’s not as easy as it sounds as they’re generally mixed at the moment. Matters are further confused during ward round when we’re told that he doesn’t have norovirus and that he now has 3 clear samples. When I check this with a nurse conscientious enough to go back through all his tests, we find he’s actually had 5 clear samples in a row, so he’s fine. Josh and I have a good afternoon, although he complains of tummy pains again just before and during physio. After a hot bath we watch the week’s Champions League games and The Brits. He’s asleep around 8.30pm but it’s an unsettled night with him having another platelet transfusion and severe abdominal pains around 5am.
Saturday 19th February
Up and down for much of the night. Josh had a big vomit around the same time as his tummy ache. We enjoy a good morning though and it’s buoyed for me by the Chelsea vs Everton score in the FA cup, which we win on penalties. Josh ploughs through another wimpy kid diary after a music session on his iPad, then we sit down to watch Man Utd take on the mighty Crawley Town. The most exciting thing about the first half is the two power cuts we have, which plunge the entire hospital into darkness for a few seconds. Josh is struggling almost as much as his team and doesn’t make the second half. His last words before he nods off are ‘I can’t believe it’s nearly the end of February,’ and who can blame him ? He hasn't left this room for more than a few hours since he arrived early in July 2010 and for two months he didn’t know who we were, let alone what day it was. Joseph, on the other hand, had a mighty fine day today at the park, shopping in Bromley and wallowing in mud, mud glorious mud while playing football in a friend’s back garden. I should never have let him watch that ‘Hippo in my house’ documentary on Channel 4...
Sunday 20th February
After thinking Josh’s lights were out for the whole night, he woke two hours later to watch Push the Button and Take me Out. It was another very unsettled night, culminating in yet another 5am vomit, after which we both slept like proverbial logs until nearly 9am. He was over on his fluids yesterday, mainly due to a raging thirst which often heralds the return of pancreatitis. If it does come back, the plan is to bypass his stomach completely with his elemental feed. This would involve a new gastro tube that extends to his duodenum, the part of the small intestine that connects to the stomach. Quite what the repercussions on his eating would be I have no idea, as the procedure was mentioned in a very offhand way as usual, as if it’s as routine as boiling an egg. I’m equally unsure what effect it would have on his oral medicines. Can they be absorbed through the duodenum or would they need to be switched back to IVs ? Where would all this leave us regarding Tadworth ? Like the Johnny Nash song, there are more questions than answers at this point, and the more I find out the less I know. Claire and Joseph arrive around midday and the boys swash buckles together playing Pirates of the Caribbean until Josh starts to feel unwell and needs a lie-down. While he sleeps, Joseph tucks into his brother’s roast chicken lunch and Claire orders us a take away from a Japanese restaurant in the Brunswick centre which I pick up. While we feast, Josh rallies briefly and gets to spend a few more precious moments with his brother before going back to sleep. A constant source of amusement today is my Superman insignia t-shirt which invites several rude comments from the nurses. Even Claire gets dragged into the joke and called Lois Lane when she arrives. Truth is she’s far more like Supe’s first girlfriend, Lana Lang, who was always far hotter – even in the comic books. With no phone boxes in London anymore I can’t change to fly home, so Joseph and I drive back. I could have done with super strength to move the two cars that have blocked us in since Claire parked. The road’s so narrow that every time I start to swing out and reverse back and a car comes along, I have to swing back and park again. It takes almost as long to get out as it does to get home. Joseph tells me the longest story of all time on the way back and just when I think he’s finished, he calmly says ‘Chapter two’ and carries on in the same vein. He thinks it’s hilarious and it is, although by the time we turn into our driveway and he’s on Chapter 32, the joke’s wearing a little thin. An action packed afternoon follows, mostly revolving around football as Joseph is now addicted to playing. Josh vomited again after we left and they stopped his feed. The plan to bypass his stomach and pancreas will be put into effect as soon as possible. Claire’s web search on the subject proves far more fruitful than mine and heralds a few answers to our many questions. Quite when and if he’ll be allowed to eat again remains a mystery. With just one night at home before I’m back at GOSH, I only do essential washing and recording for Josh. The friends who kindly let us borrow Mad Men Season 3, have since lent us a DVD player that plays NTSC discs so we can view it. I watch 3 episodes before bed and find myself missing the weird and wacky world of advertising far too much...
Monday 21st February
It’s Monday, right ? I know this the moment I wake up, which is why I run downstairs to put the recycling out. They collect plastics and cans every 2 weeks and have started coming so early we missed the last collection and both our bins are heaving. By the time Joseph and I have had breakfast and played a couple of football matches, I’m convinced it’s a Sunday and can’t understand why there’s so much traffic heading into London. We stop off at Toys R Us on the Old Kent Road for a wander and I treat Joseph to a huge 3D poster of a Tiger on the prowl. He’s very excited but I have to talk him out of showing Josh because he won’t see the 3D might get upset. As it turns out, Josh is oblivious to everything when we arrive and back on IV pain relief. He had shocking night and was screaming in pain until the early hours once again. Well, not that early even, as it had gone 5am before the nurse on duty took him seriously enough to write off the oral morphine and paracetamol and let the pain team get involved. Josh is back on fentanyl and drifting in and out of sleep between pulses of medication. It’s our old pal pancreatitis again and Lord knows why it’s come back again so swiftly. Claire had about an hour’s sleep last night and is tired and hungry. Not wanting to eat in the room for fear of Josh smelling the food and becoming upset, we manage to find a nurse to sit with him and nip out to Nando’s. It’s a rare treat to be in a restaurant with Claire and Joseph but all our thoughts are with Josh, so it’s not our happiest meal. Joseph’s behaviour is impeccable, although his face betrays his disappointment when dessert turns out to be an ice lolly rather than anything chocolatey. We take pity on him and he orders a chocolate fudge cake so deliciously decadent it defies description. There’s slightly too much for him, so Claire and I get to fight over the last few mouthfuls. I’m convinced Claire comes off best, but she’ll probably tell you it was me. They head home soon after that, with Josh stirring long enough to say goodbye. At 3.30pm he gets a visit from his physiotherapist, who knows he’s not able to do anything but just wanted to say hello and see how we were. A doctor pops her head round to say that his planned bone marrow aspirate and lumbar puncture will still go ahead tomorrow, which is a surprise given his current condition and level of sedation. Day turns to night. It’s hard to explain how sad it is to see Josh looking so washed out and lethargic again. He’s lying almost motionless in bed with his hands resting on his chest, tightly clasping his pain relief button for comfort like a metallic teddy bear. His eyes are bulging like a bullfrog, although his pupils are like pinpoints which Claire tells me is down to fentanyl being an opiate which means it’s made from opium. It also makes it difficult for him to wee, even though he still keeps getting the sensation which only adds to his frustration. His hands and feet are cold and clammy, even though he feels hot and won’t let me cover him up. I suspect it’s going to be a long night for both of us...
Tuesday 22nd February
Well, it was a long night for me as I didn’t sleep until 4am for some strange reason, but Josh was pretty settled. There was an ear piercing screech around 2am when his pain relief machine alarm went off, but that was down to a nurse forgetting to unclamp it rather than him pushing it so often it locked out, which is what happened yesterday. I read last night that in most cases it’s impossible to find out what’s causing pancreatitis unless it’s alcohol related, which it obviously isn’t unless Josh is sneaking out to Oddbins every time my back’s turned. Everyone remains very casual here regarding Josh’s current situation and you can’t help but worry they might miss anything new that could be causing the same symptoms. Today sees the return of one of the best and most communicative consultants here, so hopefully ward round will be more than just the monologue it’s been for the last few weeks. Josh’s weeing is coming a little easier now and he wakes at 10am for quite a large one and to enjoy his last sip of water allowed before surgery. I text Claire to let her know it’s scheduled for 1.30pm and can’t help but think about how routine it’s become for us to see Josh go under anaesthetic. He’s not keen this time as he knows the lumbar puncture can leave him in pain for several days, but once I’ve explained it should hurt less this time as he’s already on heavy doses of pain relief ( Fentanyl is far more potent than morphine ) he shrugs off any concerns and goes straight back to sleep. No sooner have I done that, than I hear he won’t have the lumbar puncture today, just the aspirate as his platelets are low again and he’ll need another transfusion. Ward round is fine, but involves lots of head shaking as the mystery continues. The enzyme levels that herald pancreatitis shouldn’t rise above 100, but have leapt up to 5,000 in the last 24 hours which is unheard of and makes no medical sense. At least the doctors are honest enough to tell us they’re baffled,rather than pretend everything’s okay and palm us off with some feeble plan with big enough holes in it to drive a herd of elephants through. They will talk to another team at King’s about Josh to see if they can shed any light on the case and involve gastro again as it’s more their territory. They tell us we’re going to be here for a fair bit longer as there’s no point in him going to a rehabilitation centre if he’s still unwell, which is music to my deaf ears. We had felt things were being brushed under the carpet over the last two months in an effort to get him out of here and we’re in no hurry to go and then come straight back. We hit 3pm and we’re still not in surgery, but a radiologist arrives to do an ultrasound of Josh’s pancreas. I’ve not met him before, but he’s scanned Josh twice when Claire’s been here and firmly believes he caught norovirus from us. He doesn’t believe me when I tell him Josh is clear, as it’s still on the system because nobody knows how to delete it. The scan starts innocuously enough, but he’s pressing very hard on Josh’s abdomen and he starts screaming in pain. I’m then told he can’t see the pancreas because there’s food in the way, even though Josh hasn’t eaten for several days. He then says it’s gas. Then he says there’s something else blocking it, but can’t say what. By this time I’m fast losing patience with his inability to articulate and am worried about what he’s seen. He then tells me it’s medicines from his gastrostomy that are blocking his view, which seems a little strange as they were given 6 hours ago and we weren’t told not to give them. To make matters worse, he then keeps drawing attention to the mass of bruises all over Josh’s body, saying he’s never seen him with bruises before and I found myself feeling really uncomfortable and having to defend them before social services are called in. Truth is he bruises at the slightest touch and will no doubt have a few more tomorrow as a result of his ultrasound. There are still large patches of discolouration under his chin, at the top of his right leg and on his arm from his lumbar puncture back in August as well as a brand new collection of beige, mauve, yellow and deep purple patches of colour that wouldn’t look out of place on a Vivienne Westwood swatch board. By this time Josh has had enough and wants the gel wiped off his body and the whole sorry business to end. He’s very distressed and only settles down after I’ve changed his bed sheet and he’s had a couple of pushes and lost himself in an opium haze again. For the record, it wasn’t just me that had a problem with him as the nurses and doctors have complained about him too. Josh is desperate for some water by now, but I sadly can’t oblige. It’s gone 4.30pm before we go down to the operating theatre and it’s the usual last minute panic, even though we’ve known we’d be going all day. We’ve just unplugged all his machines and are wheeling his bed out of the ward, when I hear he’s in theatre in the old building. Both the nurse and I question whether the bed will fit in the lift over there. It’s not exactly a question as I know it won’t, so we head back to his room and a porter rushes off to find a smaller bed. He’s back 5 minutes later, but experience tells me the bed still won’t fit unless he’s off his IVs, so we disconnect him from those. It was the right call as we struggle to get two people and a bed into the lift as it is. Josh goes under with little trouble, although the bed that was commandeered doesn’t move up or down, so it’s a struggle to transfer him onto the trolley. He’s only in theatre 10 minutes, so I nip down the stairs for a Kit-Kat which I munch my way through before running up 18 flights of stairs to burn the calories back off and avoid a 15 minute wait for the next lift. Josh is fine but sore. We wheel him back in the trolley only to find his bed has disappeared from his room. By this time he’s crying out in pain again and desperate to lie down and start on pain relief. It takes 15 minutes to discover that Robin Ward stole his bed as they have an older patient on their ward who needs a big bed. Given that Josh’s bed was specifically chosen for him by the physiotherapy department, I don’t give it up lightly. Not only did nobody ask, but they didn’t even leave him one in return. While we’re waiting, I swap hospital horror stories with the porter, who’s been at GOSH for 14 years and whose wife has been there 24 years. He’s seen pretty much everything that could go wrong go wrong in that time and isn’t surprised by anything. Neither am I, to be honest. Finally Josh is settled and cradling his beloved green button again to ease his pain. It’s been a long day and still only 6pm. Time to feed Josh’s fish, animals and zombies...
Wednesday 23rd February
Josh just couldn’t settle last night. Weeing for England and struggling to find a comfortable position. As a result, we both had very little sleep, although his pain remains under control. The morning leaves me feeling tired and jaded, so when a volunteer offers to sit with Josh I jump at the chance. The dilemma, as always, is whether to stretch my legs or eat. It’s only 11am, but as I haven’t eaten properly for a few days, I opt for brunch at a cafe round the corner. Tadworth have called Claire to see if we’re happy with the admission date which is next Tuesday, She’s updated them on Josh’s situation and that it’s highly unlikely we’ll be moving. One of my favourite nurses pops in with DVDs galore to get me through the rest of the week, if not the rest of the year. First out of the box is Spaced, a series I started watching on TV but never had enough time to carry on. No such problem here and I rattle through 10 episodes, hoping to drift off to sleep but never quite managing it. The day is painfully slow with Josh needing me here to help him answer calls of nature and to get him comfy, but little else. I reluctantly put his eye drops in around 2pm for his weekly check up. He’s not happy about it but is very brave and does his best for the ophthalmologist, who has a really good relationship with him now and obviously really cares. Josh is neither up for a bath or watching Man Utd and sleeps all day and night, Hopefully this will mean he’ll wake up refreshed and raring to go tomorrow, but I wouldn’t put money on it...
Thursday 24th February
It was 5am once again before Josh settled into a deep, undisturbed sleep. He’s becoming confused at the moment, thinking night is day and struggling to find the right words to describe basic objects. Hopefully this can all be put down to the side effects of fentanyl and lack of sleep as I’ve been pretty incoherent myself over the last few days too. Josh is also becoming obsessive over his desire for ‘normal’ water which is how he refers to drinking water that doesn’t go straight through him and leak out into a bag. At the moment nothing except a few medicines are allowed to stay in his stomach as they will irritate his pancreas even more. Claire and Joseph are down today as we’re swapping over. There’s also a possibility of a visit from his best friend, although it’s difficult to schedule as Josh’s health is so unpredictable at the moment and it would be unfair for them to travel to London only to find him in pain or fast asleep. As it turns out I manage to wake him around 11am and keep him up long enough to play with Joseph for a short time. The TPN expert from the gastro ward pays us a visit while they share the bed and a game of Pictureka on Josh’s iPad. She’s as baffled by his recurring pancreatitis as everyone else, but has a few things she’s like to try. One of these is to put him on a different kind of TPN that elderly patients often have to reduce their cholesterol. Another is to change his peg and bypass his stomach as previously discussed. There’s a third idea that escapes me at the moment, but it’s another one that’s easy to put into practice and can’t do any harm. None of these are treatments she believes will work, but it would be a shame not to at least try. The next step would be to take a closer look at his pancreas by putting a camera down there and a dye. The drawback to this is that it could well lead to another attack of pancreatitis, although both she and we feel it’s worth the risk. It’s like a Summer’s day outside and Joseph and I wander over to the park once Josh is asleep. He’s desperate to play football and we don’t have a ball, so we head home and eat on the train. I’m feeling shattered, but as he’s spent the whole day dressed in his full football kit, complete with shin pads, we spend a good 90 minutes in the garden working on his skills and playing matches. Once his victory celebrations are over, we nip out for a Chinese takeaway so he can show off his chopstick skills, before swapping his football strip for a bat suit and ending the day kicking seven bells out of each other. Josh woke for a few hours in the afternoon but remains confused and vacant at times. Rather than swap over again on Sunday, Joseph and I are driving up tomorrow as Claire’s managed to secure the BMT flat for a few days. Packing as well as washing needs to be done before we set off, but it can wait until the morning as I’m finding it hard to stay awake and can’t find any match sticks in the house to prop my eyelids open with...
