It hardly feels like I’ve been home at all this time. A busy day, another late night working and suddenly I’m heading back to GOSH. I managed to squeeze 15 minutes in at the gym during Joseph’s swimming lesson yesterday, otherwise all work and no play made Jon an exceedingly dull boy. Walking into Josh’s room makes up for all that instantly. He’s sitting up colouring and looking like a million dollars - depending on what the exchange rate is at the moment. It’s a miraculous recovery, although his hearing has taken another hit and even shouting into his ear only brings a repeated answer of ‘ Pardon ?’ I put one of his hearing aids in when his teacher arrives and he appears to be comfortable with that, although it’s out again when I return from lunch. I went back to the Chinese that I sat down in when it was closed a few weeks ago, but this time I’m early enough to get a prime seat by the window and a two course meal for £4.90. I say prime seat, but the front door won’t shut properly and I’m freezing. This must be the fourth or fifth restaurant I’ve discovered on my travels round Holborn where this is the case. The draft from this one is particularly strong and explains why the staff are wearing coats. Chicken and sweetcorn soup soon warms me up. It’s makes a pleasant change not to have to rush lunch today as a volunteer offered to sit in with Josh after his school teacher. I roll up at 2.45pm only to find she never turned up and Josh has been kicking his heels for the last 30 minutes. Luckily he’s still lively and we play Everton Monopoly which he begged me to bring up. He picks the World Cup as his playing piece, I settle for an old boot which feels like a fair reflection of my team’s footballing achievements. Ward round doesn’t happen until late afternoon, by which time we’ve managed a long overdue bath and hair wash. It’s a bit trickier than usual as Josh is still attached to three machines and has several dressings on his body, but he’s such an expert at stepping over or under his wires it proves no real problem. His skin is a little more active than it was but nothing like as bad as it has been. We watch the weekend’s footie after I’ve creamed him up until the doctors finally come round. It’s an emotional ward round for all concerned as, if things go to plan, he’ll be leaving here on Monday to start a new phase of his life at Tadworth. The doctor asks how we feel about that and it’s a mixed response. He wants to be sure we’re happy with the timing but it’s a difficult one to answer as we haven’t heard back from them on a number of issues yet regarding what they can and can’t cover there. Doctor Robert presided over Josh during his darkest times and has never been less than magnificent, so I think he’s feeling an emotional wrench at the thought of Josh going too. He’s very pleased with Josh’s speedy recovery but is still none the wiser as to why he’s had Pancreatitis three times in 6 months. There will be a discussion with Gastro in the next few days which may shed some light on it. In the meantime Josh is still not allowed to eat which is beginning to get to him and making him rather tearful. Hopefully he’ll get some good news on that front in the next few days. We settle down for the evening after that and watch the remake of The Karate Kid with Jackie Chan. It’s a good movie although at 2 hours 14 minutes it overstays its welcome in places. Man Utd come back from 2 goals down against Blackpool to win 3-2 and Josh ends the night singing along to his iPad at the top of his voice. It’s been another rollercoaster of a week, but as I sit down to write this I can’t help but smile at the way things have turned out...
Wednesday 26th January
After several hours of tossing and turning, Josh finally got comfy and slept which meant I did too. The morning is kick started with a visit from Gastro who want to know why he’s having so many fluids and why he’s been given them separately rather than included in his TPN. It’s a good question and I can only answer the first part. They’re also wondering what will happen at Tadworth regarding his TPN and whether we need to be trained how to do it in case he comes home on it. They suggest we come back to stay on Rainforest Ward for 4 weeks before he goes home which is a terrible idea. Not only is the ward an under-funded dump, but it would be soul destroying for Josh to come back here for any reason other than health problems. He’s reluctant to rise and shine for physio this morning but gets a reprieve as they’re running around 40 minutes late. I nip to Tuttis for a hot chocolate when they arrive and download today’s paper onto Josh’s iPad which not only saves me 25p but stops my thumbs getting dirty. It’s a day when just about everything falls into place. I watch Josh finish his workout and join in on the last two challenges - the first of which involves passing a football which he does extremely well. The second involves sliding down a wall and holding a squat position for 10 seconds which he seems to manage more easily than me. Ophthalmology are up next followed by a music session. Josh has two new haemorrhages in his good eye but that’s almost to be expected as his blood pressure’s been high, his platelets low and he’s been vomiting. His music teacher is putting together a short video of Josh’s best performances before he leaves which will make interesting viewing. She’d like to use the film for training and funding purposes which, as usual, involves the signing of far more consent forms than a bone marrow transplant or a general anaesthetic. There’s a volunteer lined up after school, so I have long enough to find somewhere new and exciting to eat. I don’t choose wisely but escape food poisoning and am back before 3pm to find Josh surrounded by adoring women. The volunteer has been joined by two nurses from Tadworth who are here to meet us and discuss various aspects of the move. This will not be happening next week now, as the main consultant he’s under is away. It’s probably for the best and will hopefully mean he’s more stable and more of his medical conundrums will have been sorted. One of the nurses is called Delia as in Smith but she says she doesn’t cook - or get drunk at Norwich football matches and incite the crowd presumably. Josh is playing cards when she introduces herself and says’ I’ll Delia in’ which just goes to show that bad jokes are hereditary – apologies for the genes, Josh. His busy social life means it’s gone 5pm before there’s a slot in his diary for the morning ward round to be squeezed in. Almost all his drugs are now oral and his TPN has been adjusted for fluids and contains different lipids which won’t clog up his pancreas. No word yet on when Josh can eat, but he keeps complaining his tummy is grumbling and he dreams of salmon every night. After an hour or so and a good old giggle playing FIFA 11, Josh starts yawning. When I tell him he should have an early night he tells me it’s not a sign of being tired, it’s because he’s starved of oxygen being in the same room all day. The boy has far too much medical knowledge. We watch ‘Goldeneye’ once I’ve put his various creams on and changed his sheets. I try explaining the plot, but in truth it makes no sense whatsoever. Working out who the double and triple agents are is difficult enough, but when he asks why the baddies have tied James Bond up in a helicopter that then fires missiles at itself to kill him when they could have just shoot him, I have no answer other than the scriptwriters should be shot too. Josh can’t get to sleep again tonight, no matter how hard he tries. He tries singing to himself, counting sheep, you name it. I finally drifted off around 3am, by which time he’d stopped rabbiting so hopefully he was asleep too.
Thursday 27th January
No chance of waking Josh for physio today given how little sleep he managed last night, but I give it a shot nevertheless. He opens his eyes briefly for a few minutes when I turn on his iPad and suggest we feed his fish and collect money from his zoo, but we can’t get a good enough internet connection and he goes back to sleep. Quite why the signal varies so much day-to- day, minute-by-minute, I have no idea but it’s internet highway robbery because we’re paying for a service we often don’t get. It’s the same with mobile phones but we’re expected to just like it or lump it because we’re tied into contracts. It’s ridiculous. You wouldn’t pay the council to take your rubbish away every week if they didn’t collect it would you ? Oh, right...bad example. Anyway, in the end we let him off today’s session on condition that he does more walking tomorrow. He’s due his Pentamadine today. This is generally given IV and is very important because it helps protect his lungs from a particular type of pneumonia that develops in patients with compromised immune systems. In an effort to reduce his IVs it’s been switched to a nebulizer which means he has to inhale it over 30 minutes which is not pleasant. Like everything else, there are severe risks to taking it that have to be weighed up against the good it will do. In Josh’s case there’s no real contest. We’re due to have it done at 11am on Robin ward, just round the corner, but lose the room 10 minutes prior so we have to have a rethink. In the meantime, another nice nurse arrives from Tadworth – this one bearing gifts and photographs of the centre including the door to Joshuas’s room which already has his name on it. He’s grateful and excited and on cracking form today, although he’s understandably upset when he has to have a tube shoved down his nasal passage to collect a mucus specimen. Claire arrives just as I whisk him away to a room on Safari ward for his Pentamadine so we don’t get much of a chance to talk. It takes much longer than usual and after his initial salt water inhalation to open up his lungs, I realise I’m going to miss my train if I’m not careful. I hang on as long as possible because I don’t want Claire up here as it was where she was accused of stealing a mobile phone by some odd, demented woman back in July on the day Josh was re-admitted here and it has some very unpleasant memories, but as time ticks away I realise there’s no choice. The nurse phones the ward and Claire takes my place, leaving me free to dash across London to get back just in time to pick Joseph up and take him to tennis. He comes out with a gold award sticker for doing an 8 volley rally and I get a few minutes to phone my sister and check up on what’s been happening at home while I watch him. Against all expectation Dad is getting stronger everyday which is great news and a Claire and I are both too tired to have a proper conversation after Joseph’s gone to bed. The blog is beginning to like a chore at the moment as I rarely write it before midnight. Tonight is no exception.
Saturday 28th January
There was an outside chance that Joseph would spend today with friends, but those hopes were dashed yesterday leaving me to try and balance work and play with Everton’s FA cup match against Chelski. I fail miserably on all three counts. We have a fun day but at what cost it’s hard to say. Having fallen asleep on the bed next to Joseph for the umpteenth time tonight, I have to try and rally myself to tie up the week’s loose ends before heading back to GOSH tomorrow. I crawled into bed at 12.30am after a hot bath and am currently sitting up with a notebook and pen in my hand and the ‘Rocky’ theme tune echoing in my head, hoping to drag myself up off the ropes and make some progress before dawn. Who’s Dawn ?
