Sunday 6th February
It’s a day for doing very little. After a nice long lie-in, Joseph’s sitting at the kitchen table doing what he likes to do best. Okay, that would have meant shovelling chocolate in his mouth. I mean second best, which is drawing. He’s a temperamental artist and gets frustrated when the images in his head aren’t quite the way they turn out on paper, but more often than not they’re fantastic. You’ll find a tiger he drew on the left. After our arty morning, we call in on Claire’s parents to see if I can help fix their video recorder. We stay for lunch, which is Hungarian Goulash, and we both leave satisfyingly empty plates. The glass of wine goes down rather well too, although not for Joseph obviously, as he’s more of a whisky man. It makes a nice change to not just have Joseph for company – loveable that he is. A quick romp round Bromley and we’re home in plenty of time for me to dry and iron the second lot of washing and to re-enact the best of Bruce Lee in several slow-motion martial arts fights with Joseph, who strips to the waist for added authenticity. He’s tucked up in bed by 8pm, exhausted from all his Kung Fu fighting, but finds the energy to tell me how much he wishes we could go back in time to when Josh wasn’t ill. It’s becoming increasingly hard to remember what it was like, but seeing his room empty every time I’m home tears me up deep inside. It’s nothing compared to looking at photos of him taken just 18 months though, when life was so different and so was he. Josh had a reasonable enough day at GOSH, although he’s still being sick and is complaining of terrible headaches. While I’m catching up with Claire on the phone, she breaks off to bring the night staff up-to-date.‘ He’s had one poo, two wees and 3 vomits,’ she explains. I love it when she talks dirty.
Monday 7th February
Once I’ve taken Joseph and a friend to school, I have to decide whether to spend my last hour at home relaxing in a long hot bath or at the gym. Home wins out as Virgin won’t let me take soap and shampoo in their Jacuzzi. Josh has had fluctuating blood pressure since I left and daily headaches. He’s still vomiting and has started getting tummy pains too. He has a particularly bad one today while his teacher’s with him and I’m at lunch. Ophthalmology want to see Josh today as a precaution following his vomiting and turn up during his visit from Ray Hall, the head of the Everton’s football academy. Josh’s eyes are fine, which is a relief as the pink Everton shirt he’s presented with is bright enough to cause a haemorrhage. The shirt’s been signed by the whole of the first team squad and Josh is delighted to hear they remembered him and send their best wishes. Everton’s manager remembers him as the boy who helped pick the team that knocked Man United out of the FA cup – oh, the irony ! Ray has a good old chat and Josh asks him to sign his Rooney book as we found he got a mention in there. He’s never read it and flicking through the pages finds a photo of himself with Wayne, which he promptly autographs. Josh was also given a signed pennant from the Academy and money to buy something nice with, provided he emails Ray to let him know what he spent it on. Hopefully nothing to do with Man United. Once he’s gone we’d planned a bath, but Josh is in pain again and just wants to sleep. As the evening wears on it becomes far worse in spite of his pain relief. When it does eventually settle down, he starts feeling itchy and asks for Piriton. He then has a strange moment when he tells me his bed has moved and is in the wrong place. He sounds tired and a little confused but the itching continues. He’s given a different drug to help calm it down, which seems to do the trick but rather than make him tired it appears to have the opposite effect and he can’t sleep. At around 1pm, he starts talking loudly to his cuddly lemur and looking towards the door. When I climb out of bed he tells me he keeps hearing voices that repeat the movements he makes with his lemur. He’s convinced they’re real and I try all kinds of ways of making them disappear, but with little success. When I take his lemur away they stop, only to return but echoing his own movements this time. It all feels pretty scary and I tell the nurse, who calls the emergency CSP’s but they can’t come. A doctor eventually arrives but doesn’t really do anything. To be fair, I’m sure these hallucinations are a reaction to the last drug and he had, so there’s not much anyone can do other than let him sleep it off. This proves difficult as excruciating tummy pain means he’s screaming all night. I climb into bed with him at one point and he snuggles up while I rub his tummy, but it only brings temporary respite. At around 5am after IV Paracetemol, he seems to settle again and we decide to stop his oral medicines, just in case it’s pancreatitis again. Just so you know, the scan on Thursday which we hoped would shed some light on his pancreatitis told us nothing new which is a shame – especially in light of this. I don’t sleep. To be honest, when he first started mentioning the voices I felt giddy and eventually had to lie down for a few minutes before I keeled over. No matter how bad things have been, nothing’s ever affected me in that way, although I have no idea why this did – maybe it was just how normal he appeared to be talking about it. The voices did eventually stop, but the nurse found his pupils very dilated and unresponsive which could still be put down to the eyedrops he had in at lunchtime. Then again, it might be something else entirely…
Tuesday 8th February
They leave us alone to sleep in. I wake around 8am which means I must’ve been asleep at some point, it just doesn’t feel like it. Josh’s bloods have come back and the levels suggest pancreatitis again which is a real concern as nobody would appear to have any idea what’s causing it – or his vomiting, come to think of it. When Josh does wake up he’s howling in pain. IV Paracetamol works for an hour but it’s another three before he’s allowed any more and he sounds like he’s being murdered, the pain is so excruciating. We stopped his lipids last night and halted his orals. His blood pressure’s 146, so we give him something to try and bring it down, even though it has to go down his peg and into his stomach. Ward round is a strange affair with me lying on Josh’s bed rubbing his tummy and trying to hear what the doctors say over his screaming. It’s most likely pancreatitis again and they will ease off TPN and onto elemental feed slowly once he’s well again. I’m not sure anyone buys into the theory that it’s the TPN causing it now we’ve changed his lipids, but that’s what’s offered up by means of an explanation. When I question one of the doctors again later, she confirms that it isn’t logical. We both think the lead consultant just wants to sound like he’s got everything under control. They prescribe oral morphine until the pain team can sort something out, but it isn’t needed as the pain team surprise everyone by having Fentinel up and running and on demand at the touch of a button in little over an hour, instead of the usual four. I guess it must be down to Josh being a regular customer – it’s like walking into your local pub and having your usual drink waiting for you on the bar before you’ve even ordered it. He settles down quickly after that and for the rest of the afternoon he sleeps – waking briefly only to press the button every now and again for more pain relief. At a loss and unable to leave the room for longer than a couple of minutes, I gorge myself on the only food available from the BMT kitchen which is Jacobs crackers and Dairylea spread – oh, the nostalgia of being a Dairylea kid again. By 4pm Josh’s pain is building up again as he used his quota up in the first two hours and I’m told he can’t have anymore. This later proves to be completely incorrect, which is just as well as it makes no sense. We give him IV paracetamol again to tide him over, but it doesn’t really help this time. As the pain becomes worse, he vomits up his hyper tension drugs, which means his blood pressure remains alarmingly high. Our regular cleaner looks shocked to hear him screaming and retching as she empties the bins and leaves the room as quickly as possible, obviously distraught. There was a bizarre moment involving her last week, when she was mopping the floor and accidentally backed against a talking birthday card for Josh that we’d blue-tacked to his wardrobe. Her generously ample, West African backside somehow managed to open it up which resulted in Homer Simpson shouting out ‘ This has to be the greatest day of my life. Yippee !’. I suspect it’s been a few years since she’d had a reaction like that. Hopefully she didn’t think it was from me. After spending the whole day in a darkened room, it’s suddenly dark outside too. Josh drifts in and out of a drug induced snooze while I don’t really do anything useful at all – not even catch up on sleep. I’m seriously hungry though and discover Josh’s dinner in the kitchen, seconds before it’s taken away on the trolley. It’s sweet and sour something or other with rice noodles and is surprisingly edible, although I still couldn’t tell you what the something or other was. One of the nurses has lent us Burn After Reading on DVD which more than passes the time until Josh’s pain relief runs out and the machine emits such a loud, high-pitched screech that it must’ve sent every dog in London crazy. Thank the Lord Josh and I are deaf.
Wednesday 9th February
It’s a settled night by comparison and we both get some sleep. Josh gets a little trigger happy on the old pain relief button at times but also goes long periods without pressing. I’m up and down a fair bit but sleep until 9am to make up for it and wake up feeling reasonable refreshed. The pain team appear soon after to check on his night but we agree not to turn up his background dose as I don’t think it will make him press the button any less. He’d been put on regular Piriton yesterday which i wasn’t sure about and today’s nurse and I agree to stop it which we do. There are so many unanswered questions regarding his pancreatitis that I don’t know where to start. We just have to make sure they’re still looking for answers and that we’re quick to pounce on any flawed thinking, which is what we’re being given at the moment. Another example of that is I’ve been told his high blood pressure’s probably down to pain at the moment as his renal function is good, but when I ask another doctor about this, she says the opposite. Whilst pain killers don’t stop pain (they simply raise your threshold ) they should stop your body’s reaction to it which is what blood pressure and heart rate measure . The doctor explained this to me when we were trying to fathom what the hell is going on with him. Claire’s theory that it’s all down to random inflammation makes the most sense at the moment. His Crohns was essentially inflammation of the gut and could never even be medically defined as Crohns because it didn’t fit the normal pattern. Since then he’s has inflammation of his joints, brain, lungs and inflammatory fluid around his heart – none of which can be explained. Pancreatitis is basically inflammation of the pancreas, so maybe there is no explanation other than his immune system is still flawed. The doctors often say how unpredictable Josh is, but in truth he’s actually predictable in his unpredictability. The day creeps along until a volunteer knocks on the door and offers to sit in with Josh for as long as I want. I’d just eaten Josh’s lunch so, whilst I hastily agreed, I didn’t actually do much more than stretch my legs in the sunshine, but a sandwich for tonight and make a few phone calls. Josh in fluffyland, thanks to the pain relief, but alert and coherent when he gets up for the toilet. He drifts for most of the day but wakes for an hour around 5pm for a chat, a cuddle and a game of Pictureka. At 10pm he sits up to check how his Tap zoo and Tap fish are doing and I get top marks for looking after them properly. His latest free download is Zombie Farm which involves growing crops and selling them to buy and grow enough zombies to attack Old McDonald’s farm. He’s soon asleep again leaving me to grow tomatoes, pick them before they wither, crop rotate and spawn enough of the living dead for an attack tomorrow at approximately ten hundred hours. It wasn’t looking for full time employment right now, but it’s probably the most demanding job and rewarding job I’ve ever had. Shame the pay sucks...
Thursday 10th February
With zombies, fish and zoo animals well tended, I started watching ‘Glee’ last night. Claire and Josh are slowly working their way through it, so I thought I’d take a quick look and found it far more addictive than I probably should. The DVD has a jukebox mode which shows all the song sequences, so Josh can just watch those when there’s a slightly more adult episode on. My own glee is short lived this morning when one of the doctors tells me Claire’s on the phone. I’d forgotten to turn my mobile on and she’d been trying to get hold of me for an hour. Basically, Joseph has diarrhoea and she’s feeling a bit iffy too and isn’t sure what to do. We were originally swapping over today as I’ve done three nights rather than two, but I’d planned on four originally -the only thing stopping me was having to return a DVD recorder to John Lewis before Sunday when the guarantee runs out. I’m happy to do another night once I find out the technical department is open until late on Friday. The day plods along until Josh’s teacher arrives just after I’ve woken him up. He seems happy enough, but so would I if I was linked up to a machine that drugs me every time I push a button. A rum and coke or a bar of chocolate in the other hand would complete the fantasy. I didn’t think his teacher would come today, but Joshua’s happy to let her read the Guiness Book of Records to him, so I decide to take full advantage and run out of the door. Unfortunately it’s pouring with rain, so I don’t get far and end up coming back to GOSH and having a sandwich in the canteen. He has an ultrasound in our room when I’m back. The operator is very gentle with him and Josh is delighted that the gel’s even been warmed in an all-new gel warmer they have downstairs. When I tell him I’ll canvas parliament to make sure the warmer doesn’t go in the cut-backs, the operator tells me he’s more likely to go than that is, which would be a shame as he was very nice , but if push came to shove... Anyway, the pancreas is inflamed but there’s nothing particularly untoward going on as far as he can tell. Today’s nurse is emotionally all over the place today and we’re running late on everything. She’s lovely but seems to enjoy more breaks than Eddie the Eagle on a black run. She’s also starving and can’t chocolate pastries out of her head. When I find her about to tuck tucking into the Dairylea crackers from the BMT kitchen, so offer her Josh’s poached salmon instead in the vain hope that all the conjecture about oily fish is true and it improves her performance. It doesn’t, but at least it saves me washing up. Given Josh’s continued high blood pressure, I’ve asked ophthalmology to be told and they request I put eye drops in. Josh isn’t best pleased but copes well. I’d hoped to give him a bath today, but suddenly it’s 5am and with no sign of ophthalmology yet it’s looking highly unlikely. They appear around 6am and he’s given an all clear, which is miraculous as his platelets are so low that he has another transfusion planned for tomorrow. He’s awake after his examination for a couple of hours and we watch a bit of TV, but he’s still very tired and starting to become very frustrated that he can’t eat again – just as he was starting to make some progress. At home, Joseph is fine in himself but seldom off the toilet. Claire and I will probably swap over tomorrow and then I’ll come back on Sunday - with Joseph if he’s recovered. The night team have just arrived. It’s certainly not the team you’d pick to look after him tonight given a choice, but hopefully I’ll be pleasantly surprised. It does happen sometimes, honestly.
Friday 11th February
In the end the nurses weren’t too bad, although the new one did turn all the lights on by accident and nearly blinded us at 2am. Josh hardly used his pain relief button during the night, so when the pain team turn up we decide to take him off his background dose. He’s up around 10am and much more himself than yesterday. Joseph is still not 100% and not at school in case he’s infectious, so Claire drops him at her parent’s house and makes her way into London. Josh and I are reading when she walks in and after our quickest ever catch up, I’m off home like a shot as I have a plan. Rather than go to John Lewis tomorrow when the world and his wife, partner, mistress *(*delete as applicable) will be there, I’m going to go this afternoon and take Joseph to see Yogi Bear too. There’s just enough time for me to pick him up and drive to Bluewater. We make the 2.50pm showing with minutes to spare – it’s only on in 2D but, quite frankly, that comes as some relief. It’s far from great, but Joseph laughs out loud several times and doesn’t need the toilet once. The technical department of John Lewis is empty and we’re seen straight away. They send our DVD recorder off to be repaired and give me a replacement until it’s returned, exactly as promised. The guarantee expired tomorrow, so I only just made it. We even miss rush hour driving home. Perfect ! Josh is still pain free and during ward round they decided to start him on elemental feed. Claire reluctantly agreed, but then when nothing was sent up they changed their minds and delayed it until Wednesday. Josh was feeling hungry by then so, after talking to one of the doctors, Claire decided to let him eat. Only time will tell whether that’s a good call or not, but ultimately at least it was a decision and whatever happens we should learn something from it.
