Monday 13th June
Knowing I have an extra day at home makes a real difference to what I do and when I do it. The weather’s not great but doesn’t stop me spending as much time outside in the garden as inside doing paperwork. We cycled to school this morning despite the showers as Joseph was desperate to show off his new bike. I had a couple of hours in Bromley and finally took my hearing aid in for repair. In the evening at swimming Joseph managed a whole length of the big pool without stopping once and was beaming with pride. Claire has little to report from the hospital. Josh is no better or worse and his high ferritin levels could be down to his GVHD or any one of half a dozen other problems he has. It’s difficult to say whether it’s contributing to his general fatigue or not and there’s nothing to compare his level to as the last reading was taken nearly two years ago. I fell asleep next to Joseph last night after reading him a story and am determined not to let it happen again. I fail miserably and it’s gone 11pm before I wake up to get myself ready to go back to sleep.
Tuesday 14th June
After dodging showers all day yesterday, it’s hot and sunny today and I can’t resist getting down and dirty in the garden. Claire and I catch up late afternoon while Joseph’s at Taekwondo as we’re both exhausted and will probably be asleep before it’s dark again tonight. Josh is still pretty much in a holding pattern and has slept for most of the day. He managed school though and had a good gym session that included quite a bit of walking. The headaches are continuing and he had one particularly bad one today which left him unable to speak for several minutes as the pain was so excruciating. He just sat there staring blankly and screaming at the top of his voice until it became more of a dull ache. He had another huge vomit this afternoon too, although his feed is slowly creeping up and he is keeping some if it down which is good news. The plan is for him to only have TPN on alternate days and then stop it completely by the end of the week. Apparently Josh has e-coli at the moment, but Claire’s later told that all the children on the ward have it and it’s not a problem. This has been mentioned to us once before, but we still don’t quite understand what they’re talking about. The most annoying news of the day is that Madame Tussauds appear to have charged me twice for our recent visit. As they don’t have a customer service number to call, I’ll probably have to turn up there with my receipt and bank statement in hand. My fun-packed evenings of rum and cokes and watching TV at home are but a dim and distant memory as I fall asleep next to Joseph for the third night in a row. I wake up around 10pm to put the last of Josh’s programmes onto DVD and tidy up downstairs as it looks like it’s been hit by Hurricane Hanna, but I’m on complete autopilot and ambling around slowly like an extra in a zombie movie. My brain’s long dead, my legs just don’t know it yet...
Wednesday 15th June
Josh has a friend in with him when I arrive back at the hospital around noon and conks out soon after he leaves. This is unfortunate timing as ophthalmology need to see him almost as soon as he falls asleep and I can’t rouse him. They decide to come back in an hour which buggers up a perfectly planned afternoon that would have given me time to eat properly. As it is I only manage to get out for 15 minutes, just long enough to wolf an omelette down at the cafe on the corner before rushing back for his eyesight test and to put his drops in for an examination a little later. He stays awake after the test and we watch a few programmes I’ve recorded. The ophthalmologist gets very excited when she comes back to examine his blind eye as she can clearly see his retina attached to the optic nerve. Before I join in her euphoria, I ask what that means and unfortunately it means nothing. It’s only attached by scar tissue and she was only pleased because she could see it so clearly. Josh lasts another 90 minutes or so before a headache creeps up on him and he begs for morphine as I help him back into bed. His skin isn’t looking great and I apply his cream while he sleeps. The rheumatoid team examined him this morning as one of the BMT doctors is concerned about his chubby fingers, which we’d put down to fluid rather than inflammation. The rheumatologist supports our theory, although they detect a little inflammation in his left knee and want to do an ultrasound in the next few days or so. Josh is suffering from terrible stomach cramps today and tries to sleep them off in the afternoon. He sits up in bed just as I’m climbing into mine at 10pm and asks if he can play Playstation. Before I’ve even had a chance to answer, he informs me that mum let’s him play even if it’s late. Hard to argue as he’s had very little chance to enjoy himself today and we explore the Caribbean together for the next 90 minutes or so before he begins to flag and we both retire to our respective beds.
Thursday 16th June
Having got through yesterday without a single vomit, Josh erupts like Mount Vesuvius at around 7am this morning, drenching both himself and his sheets. He’s pretty calm as usual, and I’m able to clean him up and get him back into a freshly made bed within 5 minutes. He sleeps through after that while I catch up on work and income tax. The hospital chaplain walks in unannounced around midday and tries unsuccessfully to be my best friend. I’m sure he’s very nice, but he does nothing to endear himself and by the time he’s asking how I feel about Josh’s upcoming trip and treatment I’ve lost all patience. Whilst some members of the cloth are no doubt chosen by the Big Fella himself because of their inner strength and ability to charismatically spread His word, others just come across as failed social workers. At the end of the day, we don’t need counselling. Our life here is weird and difficult, but we’re a happy family in unhappy circumstances and I’d take that over being an unhappy family any day of the week. Against all odds and with some excellent coaxing from his teacher, Josh wakes up around 1.30pm for school and I nip out to eat. I’m back briefly an hour later to check there’s someone sitting in with him, then I’m off to a meeting at a trendy creative hub called The Hospital Club, which sounds like a real home from home but appears to be somewhat lacking in both nurses and medical equipment. As I walk back onto Fox ward an hour later, a passing doctor tells me Josh is in the gym and I set off to find him. He’s not in his normal hangout so I try the big gym next to the hydrotherapy pool in the basement. He’s not there either. Returning to the ward, I discover he was in his room all the time. He did manage gym, and did very well by all accounts, but was back in the room by 4pm and actually saw me at the door on the CCTV monitor 40 minutes ago before I set off on my wild goose chase around the hospital. Josh has his second large vomit of the day soon after I’m back – whether he’s physically sick of the sight of me or was just saving it up specially for my return isn’t clear. We spend a good couple of hours together but he loses momentum when one of the doctors pops in to rabbit on about nothing of any particular importance and asks to go back to bed. True to form, he sleeps until 9pm then wakes up refreshed and raring to go for another hour or so before his energy saps again and he goes beddy-bye-byes.
Friday 17th June
Ultrasound want Josh for a 10am scan of his knee but they can’t have him. He’s fast asleep and I’m not waking him for a procedure that’s unnecessary at best. We eventually negotiate a midday appearance which sounds far more realistic. In between time, I’m off chasing geese again. This time it’s postage stamps as the shop downstairs has sold out and that means a walkabout. I leave Josh’s intercom on and set off on what should be a simple quest but isn’t. I visit The People’s Supermarket, a card shop and two newsagents without any success. It’s too early to pop into ‘The Queen’s Head’ so it’s off to the next newsagents where I’m rewarded with a book large enough to cover me up to Christmas and beyond. Let’s hope we’re not still here. Luckily Josh hasn’t stirred and remains asleep until he has a large vomit just before I take him down to x-ray for his ultrasound. It’s a strange one that looks like a ham omelette only he hasn’t eaten in days so it’s a little worrying. Several nurses and a doctor take a look but nobody’s sure what it is. I check my mobile to make sure Josh hasn’t been using it to order take-aways in the middle of the night. Ultrasound is a relatively pleasant experience as it’s his knees rather than his abdomen they’re examining. They find nothing to support rheumatology’s concerns. We get the first ward round slot today, mainly because I’m the only parent on the ward. It can hardly be the weather that’s caused such a mass exodus as it’s pouring with rain again. We discuss a number of issues but nothing worth reporting here other than that the city of Pavia does have a public swimming pool according to our Italian doctor. Claire and I have Googled away for weeks without success, but he simply typed in ‘Piscina Comunale’ or something like that and hey presto ! Now why didn’t I think of that ? He tells me Italian men love to swim when it’s hot and sunny, but my experience is that they prefer to stay dry and parade around in tiny Speedos. I get little argument back, just a wry smile. Josh has a busy afternoon that kicks off with a series of food experiments with his teacher and is followed by another successful gym session. At 5pm he has to endure his dreaded pentamadine nebulizer in an airtight room on Robin ward which leaves us both with a headache but doesn’t dampen his enthusiasm for Playstation. We play for an hour or so before he’s tired and wants to go to bed. Miraculously he gets a second wind less than 30 minutes later and eats a little bread and butter and grated cheese while watching PhIneas and Ferb. Just as he settles down to sleep around 10pm his legs start to itch but we manage to nip it in the bud with IV Piriton and he has a good settled night.
Saturday 18th June
The hospital switched over to new feed pumps last night although not everyone’s been properly trained on them. They look like Britta water filters and Josh’s has been attached so high up his stand the nurses can’t reach it without going on tippytoe. To make matters worse the connecting tube is so stretched it makes Josh looks like a Doberman on a tight leash. I take the old pump down and reshuffle the rest of the machines before somebody injures themselves. Josh’s feeding remains a problem in that he’s bringing up at least half the 1500ml of elemental milk he gets a day. The world and his six wives have theories on how to prevent this, but they’re all fatally flawed because he was vomiting before he ever started on feed. The latest plan is that we turn his feed off at 2am to give him a rest for 4 hours, but when I think this through it simply means he won’t get a rest later on. Nobody’s written the plan down anyway, so when I wake at 5am I notice he’s still being fed. With no doctors notes to refer to, I hastily come up with a new plan which makes sense logically if not medically. We switch it off for two hours now and then aim to give him a further 2 hour rest at 6pm. This means his tummy has two opportunities to rest and absorb the milk rather than one. I suspect it won’t make any difference as they’ve previously put his vomiting down to encephalitis but appear to have forgotten that since he started feeding. The rest of the morning is spent Googling various combinations of ‘Piscina’ and ‘Pavia’ with other Italian words I find in an online dictionary . I eventually stumble across not only an indoor public pool, but a fantastic family outdoor water palace with two huge pools, a pizzeria, sunbeds and changing rooms. Whoopee ! My internet search also directs me to the landing page for a bi and gay pool in the area. The page opens up just as a nurse walks in and my iPad screen is filled with a large hi-definition picture of a man’s naked buttocks. I don’t think she saw anything, but I explain just in case. Around midday I nip out just as the heaven’s open and come back soaked clutching a couple of crusty rolls for Josh and Brazilian goulash for me. Josh is awake when I get back and perched on the commode. He starts to scream soon after I get him back into bed as his itchiness returns with a vengeance and needs more Piriton to settle him down. He sleeps until 5.30pm but only manages a couple of hours awake and develops a headache during Dr Who, which could be down to the baffling storyline but probably isn’t. Oral morph sees him safely back to sleep although he’s probably up more than usual during the night. Having had my hopes raised with a vomit -free day, they end up as pebble-dashed as the floor when Mount Josh unexpectedly erupts again at 2am.
Sunday 19th June
And so another week draws to a close. Not a bad one by our standards with no real dips either physically or neurologically, but no real improvement on any front either. Josh will have his gallbladder removed tomorrow morning, all being well, and it will take him at least a few days to recover from the operation. Whether it will do any good whatsoever is difficult to say. Claire had a girl’s night out on Saturday and drives up earlier than usual after skipping church. It’s Father’s Day and there are more than enough chocolates from the boys to make me borderline obese by the end of the week. Josh and Joseph giggle and natter non-stop for two hours as they chase each other round the Caribbean in Lego ships and stage an impromptu high-diving competition off a cliff top. Claire and I catch up on the week gone and the week to come as best we can over their raucous laughter and tuck into a roast chicken dinner from the cafe downstairs. Josh has a second huge vomit but shrugs it off to play a couple of board games with us before he fades and needs a sleep. Claire’s parked on a double yellow line for 2 hours longer than our blue badge allows, but the traffic wardens are either feeling benevolent today or on strike like the rest of the country. The sun shines briefly and Joseph and I make up for lost football time in the garden. His silky skills are really coming on, even though he missed training on Saturday to see King Fu Panda 2. Josh is scared about his operation – mostly because he doesn’t know what to expect. We’ve kept it pretty low-key although he knows exactly what’s to expect. The biggest watch out is if they can’t do the operation with keyhole surgery for any reason and have open him up properly.
