Friday 2nd - Saturday 10th September
I got a glimpse of normality on Thursday night at my work reunion. Just spending a few hours with people who aren’t doctors, nurses or children was a welcome change. It’s a small world though, as I ended up talking to my Ex-Chairman’s PA and discovered that her brother sculpted the Peter Pan statue outside Great Ormond Street Hospital. This is more poignant than it sounds, as that statue has a special meaning for us. When Alex died, we asked people to donate money to GOSH rather than send flowers – partly because of Alex’s love of all things Peter Pan, but also because Claire’s nephews spent so many years here. When we handed the cheque over they presented us with a framed sketch of the statue signed by the sculptor. The picture has a plaque dedicated to Alex’s memory and still hangs on the wall in Peter Pan ward as far as I know. No hangover on Friday thankfully as I have to be up early and at the hospital for 8.30am. Josh had a good night with Claire, although his TPN couldn’t have been attached properly and flooded his bed again. Not a happy bunny. He would have been an even less happy bunny if I’d woken him at 10am for a requested ultrasound. We manage to defer the scan until next week as he has tummy pains and the scan itself is a bit of a red herring. A volunteer appears around midday so I manage to get out for lunch. Josh is awake when I return and we go on a Walkabout in the Australian Outback. Well, almost. The sun is shining and there’s an Aussie garden outside the British museum that we wande, round swotting up on the various plants and rocks on display and avoiding kangaroo droppings. We watch England v Bulgaria in the evening. Sadly it’s starting to get dark early again, even though the sky’s clear. Yet another summer in hospital is drawing to a close and Autumn looms. Let’s hope we’re home before the leaves start to fall.
Josh sleeps through most of Saturday. It’s supposedly the last day of sunshine and I escape for an hour and sit in the park. With the local newsagent shut I can’t buy a Magnum anywhere but find a box of 3 x Cadbury’s ice creams for £1.50 at Waitrose instead. I eat them all before I return, but only because they would have melted otherwise... honest. I was also forced to buy a couple of t-shirts as I’m now here until Wednesday afternoon rather than Sunday due to diary complications and it would be unfair to drive all the nurses wild with my manly odour. In the afternoon Josh and I swing by Covent Garden via McDonalds. We now have so many Happy Meal Smurfs hanging from his equipment stand that it looks like a medieval gallows. No wonder they all have blue faces. Sleep continues to dominate Josh’s life and once back he conks out until Red or Black and is fast asleep again before X Factor. Claire and Joseph are at his cousin’s birthday party and he wakes briefly to chat to them at 9.30pm. Hearing the music pounding away in the background inspires him to bop along in bed to his iPad for 20 minutes then it’s back to the land of nod. He’s up at midnight, 1am and 2am for the toilet then calls out to me at 3am as he wants his dressing changed. I mange to patch it up but can’t get back to sleep and lie in bed playing snooker on the iPad to try and avoid thinking too hard about this crazy life, before finally drifting off just as the sun comes up.
Josh is up early on Sunday but soon goes back to sleep. If it’s a sign of his encephalopathy, then the new cells aren’t working and he’s regressing. If it’s because his lymphocytes are dropping, the question is why. There are still no answers to any of the questions surrounding his condition. Claire and Joseph are in town for the Sky Ride and when they call at 10am he’s already spotted Scooby Doo riding a bike. On any other day I’d think he’d back on the Bacardi Breezers. X Factor is repeated twice in the afternoon - Josh misses the first and only just wakes for the second. He’s a little more active in the evening but has another busy night as far as toileting is concerned and I don’t even bother trying to sleep. He’s starting to think about going home more and more. Even though he knows he’ll be back at GOSH and various other hospitals from time, he’s got his heart set on it now and we can only hope the TPN situation is resolved quickly and we’re home before the end of the month.
It’s Monday and we’re all on a low at the moment. It feels like we’ve done our time here and we’re just waiting for our sentence to end. Not that it will for Josh. He will remain a prisoner inside his own frail body for some time. Claire’s been looking into some of the ‘perks’ that come from him now being on the higher disability rate and one of them involves low-cost car leasing, which sounds like a great idea as we’ll probably need something a little bigger to transport him and all his equipment on days out and trips to various hospitals – especially if we’re off to Rotherham for two days every week. There’s no news on whether that’s happening or not yet, nor on the skin biopsy that was done several months ago, but his elemental feed will go up to full strength today. The rest of the day, much like the last 3 years, brings little new – although Josh is on particularly good form. He wakes up the right side of midday for the first time in a while and is still going strong at 10pm without a break. Gym was a success with him scoring more baskets than ever and walking up and down a flight of steps again. After a quick trip round town, we settle down to watch Super 8 on the laptop which somebody managed to get for him before it hit the cinemas. Gastro paid us a visit earlier in the day. They don’t believe he has a gut problem at the moment and I think they’re right. The only symptoms are the blood and frequency of his stools ( I use the term loosely as they’re almost pure water). If there’s no sign of an infection, they’ll look to slow his gut down with drugs and change his feed to a less rich one that could also help.
Tuesday starts innocently enough with Joseph back at school and in good spirits despite the gloomy weather. Claire and I catch up on the phone while Josh sleeps. She’s been off test-driving cars and even gone as far as seeing if they’ll squeeze into our garage. She drove an automatic yesterday which is far braver than I’ve ever been since it took me 15 minutes to kangaroo 30 metres across a New Zealand car park back in 1985. Josh wakes at 2pm and does a few pages of one of his English work books with me. He’s happy, doing well and doesn’t want to stop for physio - which is in our room today as the lift to the gym has broken down. He complains of a headache, so they only do a few gentle exercises on the bed while he’s lying down. He says his feet feel spongy, then his legs, then his tummy. His nose is next and then suddenly he’s screaming and screaming like a banshee. I ask him what’s wrong but when he tries to speak his words are slurred and confused and I can’t understand him. He puts his arms out for a hug then attacks me when I cuddle him. He grabs my face and twists his fingers into my eyes. When I don’t resist he stops and hugs me then attacks me again. By this time our nurse has entered the room and is trying to help. She’s calm and collected but there’s little she can do. One of the senior nurses comes in and stands there like a lump of wood for 5 minutes before asking if Josh is itchy and needs Piriton. He clearly isn’t and doesn’t and I tell him to suggest something useful or get out. He does the latter. In between battering me and embracing me, Josh tries to speak again between screams but it’s impossible to decipher. It sounds like he’s saying he can’t hear or, even worse, can’t see. Then he says he can’t breathe. A doctor appears, looks horrified and suggests a sedative, but until Josh exhausts himself and calms down, I don’t want to give him anything. Surely if he’s gone blind or can’t breathe, the last thing we should do is sedate him ? Robert, who knows him well, comes to see him and is also shocked. Josh has pulled his own clothes off and is clawing at his skin and pulling his wires. It’s impossible to hear over the screams of pain, anger and frustration, but I manage to explain to Robert what happened as best I can. After 50 minutes, Josh calms down enough for me to settle him in bed and check his sight and hearing before we give him medazalam to send him to sleep. Robert is quick to organise a CT scan. I understand the need, but instinct tells me we’ll find nothing and Josh will be fine when he wakes up – just as he was in February when something similar happened. By the time Robert’s badgered radiology into doing one, Josh has somehow shrugged off the sedative and appears happy and coherent – albeit a little drowsy. Robert cancels the scan as Josh’s apparent recovery rules out most of the things it might reveal. Josh sleeps for an hour and wakes up completely coherent and calm, although his voice is slurred and slow, as if he’s suffered a mini stroke. Hopefully this is down to sedation. He asks to play Playstation, which was what we’d planned to do after physio. I try to say no, as I’m scared he’ll struggle and become frustrated, but relent after a conversation with Claire and we decide to use it as a neurological test. He passes with flying colours and doesn’t struggle at all with what is a very complex game. After that he wants cold water and Wotsits and lies in bed watching the first half of England v Wales. What happened today is anybody’s guess and I suspect no amount of tests will give us any answers. We just have to be grateful he’s still here and fighting it somehow. The most likely explanation is that it was the JC virus, but it’s impossible to be sure. I’m shattered and retire early but sleep, not surprisingly, eludes me until the early hours of the morning.
The night was an easier than usual one with Josh only up three times. He was coherent and back to his normal self and even his speech appeared to be fine.He remembers some of what happened yesterday, but doesn’t remember attacking me or why he was naked when he woke up. Interestingly, he never actually hurt me that much. Even when he went to bite me, he didn’t bite hard which suggests he never totally lost control. I think that’s a good sign, but who knows. He mentions again that his nose felt funny just before the episode, but can’t explain why he screamed or how he felt. Robert is in early to check on him and astounded by his recovery. He’s talking about migraines or panic attacks as it’s hard to explain how anything neurological passed so quickly, but neither of us are really convinced by either explanation. Claire’s here around 11.30am by which time Josh is up and about. I’m home in time for the gym before cycling to pick Joseph up. I stand outside the wrong classroom door having forgotten he was in year 2. Back at GOSH, Claire managed to keep Josh awake for his teacher at 1.30pm, as school starts again today. She doesn’t show up though and it’s only when Claire phones at 2pm that she’s told she’s absent. Josh is disappointed, but they promise to send up a replacement straight away. He gets excited again but nobody surfaces. All the other children on the ward have teachers today, even though they’ve only been here a couple of weeks. It’s shameful he’s been neglected. By 3.30pm Josh finally gives up and goes back to bed. To make matters worse, Claire missed out on a volunteer sitting in with him earlier and doesn’t get out at all today.
The rest of the week passes quickly as I enjoy my longest period at home for some time. I get a fair bit done around the house – all those annoying little jobs you never normally have time for. I also manage to give Josh’s bedroom a much needed sort out, even though he’s unlikely to be using it when he comes home. Joseph’s only been back at school a few days, but he’s already had one of his customary ‘X marks the spot’ head bump forms.
Saturday morning sees Joseph’s football training clash with an open day at Bromley Youth Music Trust. Fortunately they’re at the same venue and Joseph manages to do both, although not at the same time obviously. Having said that, he has been known to blow his own trumpet after scoring a goal. He does well on the violin, deafens everyone in the hall by playing the drums but sucks on the tuba which, as we all know, you’re meant to blow. Josh doesn’t wake until 6.30pm, which is a new record for him. He’s watching X factor as I write.
Claire’s time at GOSH has been difficult over the last few days. Josh had another funny turn on Thursday, albeit a much diluted version of what he went through with me. There’s still no real explanation for his behaviour. An EEG and an MRI are planned for next week but it’s unlikely they’ll tell us anything. He’s very tearful and clingy at the moment and a little scared by what’s happening. Claire’s been kept busy up there and sat in on the Home Care meeting with Gastro and BMT on Thursday. By all accounts she ended up leading the entire meeting as nobody else stepped up to take centre stage. There are no real surprises. We’re planning to reduce his TPN over the next couple of weeks and have him home on feed in 3 weeks if all goes well. They’ll scope him during that time to see if anything’s going on in his gut that we should know about. A neurologist came to see Josh on Friday, but could find nothing fundamentally wrong. Josh has started to hallucinate again, seeing Man Utd and Disney tattoos on his arms just as he has before. We suspect this is fallout from whatever happened to his brain on Tuesday – a bit like the aftershocks that follow a serious earthquake I guess. His hearing has deteriorated according to audiology, although they can’t say why or by how much as they were unable to do an audiogram. He has an infection in his right ear which could be down to them removing wax a few weeks ago. There’s a lot of gunk and inflammation in there and they’re concerned that his eardrum may have burst. His left ear is in an even worse state and he’s lost nearly all his high frequencies. He is definitely a candidate for a cochlear implant as they don’t think he’ll be able to cope in the outside world, even with hearing aids. It’s not what we want to hear, but it’s what we suspected. The operation is a complex one that takes 3 hours and he would have to learn to hear again. It’s a very invasive procedure and would leave him prone to infection, so it’s difficult to say when he’d be well enough for it to go ahead. I think we’d want to hold off anyway, just in case his hearing problems are partly neurological, in which case they could improve a little over time. Claire also had a meeting with a family support worker about a number of issues. The key issue is that we get the support we need at home for the first few months. If we can keep the momentum going with physiotherapy, there’s a good chance Josh will improve and be able to manage far more physically than he can now. Claire made a heartfelt plea for this, but also a very logical one. We’re not asking for the world, we’re simply asking for the level of support Josh needs. We’ve been on public display for the last 14 months and had no private life whatsoever. The last thing we want is hoards of people traipsing in and out of our house or, God forbid, actually living with us. But if that’s what he needs to get him through the first few months of being home, that’s what we want. And no committee of cost-cutting, stuck up pen-pushers is going to stand in our way...
