Friday 6th August
I’m sorry to have to tell you that things aren’t good at the moment and that Josh is currently in the Paediatric Intensive Care Unit ( PICU) here at GOSH on a ventilator. I’m sitting up in bed, alone in his room on the ward, trying to make sense of the day’s events. I guess I’d better just tell it how it happened and try and put as positive a spin on it as I can, which isn’t easy. Joseph and I started the day with another 9 am adventure at Virgin Active. I could only get a 30 minute slot for him this time and when I went to pick him up after a quick workout, he was so engrossed in the X-Box game they were all playing that he didn’t want to leave. Luckily I managed to bribe him with the promise of a visit to see ‘Olivia at the bottom of the garden’ his pet name for our neighbour’s daughter. This is because he knows two Olivias - one of which lives in Hayes, and another that, surprise, surprise, lives in the house which backs onto our back garden. Anyway, he’s very excited and rushes off to play without so much as a bye or leave as soon as they open their front door. Arriving early and starving at GOSH, I sit down outside a pub called the Lord John Russell and order lunch. The pub brings back poignant memories of when I used to work nearby with my advertising partner of 13 years, Russell Waldron, who was tragically killed some 14 years ago cycling home from work when he was mown down by a psychotic London bus driver with road rage. We only ever went to the pub once but, given that it had both our names on the door, we never forgot it. The whole area has many memories of ‘back in the day’ as they say it West Baltimore - according to The Wire. The pub where I first spoke to Claire 22 years ago is just around the corner, as is another pub where we had our first date and the park where we had our first kiss on our lunch break. It beat queuing for sandwiches, I can tell you. Just as I’m about to tuck into my ham, egg and chips, Claire calls to tell me Josh is going down for his MRI and not to come for another hour. Ten minutes later, with just three chips and half a lager and lime left to demolish, she calls again telling me that it was cancelled at the last minute due to an emergency case. I’m there in 5 minutes and enter the room to find Josh in mid-bed bath. Claire’s even managed to wash his hair and a few minutes later he’s settled and snoring away while Claire and I catch up on news. She’s had a horrible bitter taste in her mouth for days now and had no idea what it was until she Googled it. Pine Kernels. Apparently you don’t taste them at the time, but 24 hours later they completely overwhelm your tastebuds. Let that be a lesson to you all ! Josh’s breathing becomes louder and a little more labored over the next 30 minutes. We try changing his position but it doesn’t seem to make any difference. If anything it sounds worse and we roll him back into his original position. It’s only when Claire’s gone that I start to get concerned. The student nurse on duty is keen to call a doctor and within a few minutes, Guiseppe is listening to his chest. His lungs sound fine but the airway isn’t working properly. He returns with two CSP’s ( Clinical Site Practitioners) who are the hospital equivalent of an SAS crack team. I know one of them from several previous visits and they set about looking at Josh with a calm urgency that manages to be frightening and hugely reassuring at the same time. They always communicate well while they’re doing whatever it is they’re doing, so you get the gist of what’s going on without having to ask questions every 30 seconds. With no obvious constriction of the windpipe and no new drugs other than ketamine which was added to his morphine, they suspect it’s down to over sedation and that his body’s too relaxed to breath properly. They tilt his head right back and pull his chin taut to open the airway and his breathing improves. By this time there are also three of Josh’s doctors in the room, two nurses and two anesthetists have been called to bring their breathing expertise to the problem. There must be other people there too, because at one point I count 15 in the room – not including myself or Josh. It’s possibly a world record but with nobody there from Guinness to witness it, we’ll never know. To help his breathing they insert a ¼ inch wide tube up his nose. It seems to work and they roll Josh onto his side afterwards to see how he settles. The wheezing has stopped and his oxygen saturation goes up again. Everyone leaves but for a couple of nurses. Ten minutes later, everyone’s back as he appears to be finding it difficult to breathe again. The diagnosis now is that the encephalitis has spread to a different part of his brain that has affected the co-ordination of his breathing, in the same way I still believe it affected his understanding and ability to communicate last week. It’s not good news as it means he’s unlikely to recover until his body has conquered the viruses in his brain. There’s a bed free in the PICU downstairs and the plan is to intubate him and put him on a ventilator down there. Intubation is the insertion of a tube down his throat, through his larynx, to protect his airway and allow oxygen in. The ventilator essentially moves air in and out of his lungs for him. They ask where mum is and if I want to call her. I ask if they think it’s come to that point yet, and they say hopefully not. I decide not to call her as she’d never get here in time if something went wrong and the whole idea of him going on a ventilator will be abhorrent to her given that it’s what happened to Alex shortly before he died. I keep telling myself that this is a very different scenario and that Josh’s breathing problems are purely mechanical. Once the air is in his lungs he appears fine, so provided he doesn’t react to the tube being inserted he should be stable enough once it’s done. I follow the bed out of the ward. There are so many people around him it’s like some bizarre parade. Once we’re in PICU, they have to insert the breathing tube down his throat and into his lungs. To do this he has to be heavily sedated and they ask me to leave while it’s done. I start to walk away and one of the CSP’s tells me I can give him a hug or a kiss first. To be honest, I was deliberately avoiding it as I didn’t want it to feel like a goodbye, but walk over to the bed and do it anyway. I kiss him on the forehead and try not to lose it. I remember kissing Alex on the lips after he’d died and holding his lifeless body in my arms as blood trickled down his leg from where one of his lines had been removed. I take a deep breath and pull myself together long enough for Robert to take me to one side and we discuss what happens next. There are no surprises. They plan to reduce his steroids to give his body as much chance as possible to fight the viruses. His GVHD ceases to be a concern for the moment as, even if it returns, he will be too sedated to be distressed by it. He’s now in the hands of the PICU doctors and nurses, who will give him all his old drugs and infusions plus maintain his airways on every level. It is full-on one-to-one nursing down there. As soon as they can, he will be moved to a cubicle to reduce the chances of infection as his immune system remains low. From a practical point of view I need to sort out where I’m sleeping as you can visit a PICU patient at any time, but you can’t sleep on the ward. It appears that I’m okay to stay in Josh’s room on Fox ward for the moment - presumably until Josh loses the room. I’m granted permission for Claire to sleep there tonight too, if she decides to come down. I call her and try and explain as best I can the situation. We decide it’s best to stay as we are as Josh wouldn’t appear to be in any immediate danger once he’s on the ventilator. There’s a terrible feeling of dread hanging over the conversation. We both feel we’ve been here before and are terrified of the same outcome, however, there are reasons to be more hopeful. As far as we know everything still remains reversible and Josh is probably better armed to fight the viruses now he doesn’t have to worry about breathing for himself. I’m called down to the ward and Josh is lying on the bed with a tube down his throat. He isn’t moving other than his chest which is far less frantic than before. He looks settled and peaceful. I catch up with his nurse who explains everything I need to know about how they will care for him and the mechanics of how the ward works such as ward round times, parent’s room, lockers etc etc. I kiss his forehead and leave him to make more phone calls and grab some fresh air. It’s raining as I walk round the block but it’s cleansing and calming, By 10am I return to PICU and introduce myself to the night nurses and doctor. After that there’s nothing more I can do. Josh won’t be stirring due to the sedation. He won’t know if I’m there or not and I feel like a spare part already. I kiss him goodnight and make my way up to Fox ward. Everyone looks sad and one of his favourite nurses is devastated. She’s on her way down to see him when we pass in the corridor. He won’t know she’s there but would appreciate the fact she came. Back inside his room, there’s a huge space where his bed was and without Josh beside me I feel lost. I make my bed, climb in and start to write. I’m drained emotionally and physically but don’t let it stop me writing. Once I’m finished, I suspect I will have a good night’s sleep as there’s nothing else I can do to help him anymore.
Saturday 7th August
Sleep came easily and I wake up feeling optimistic and refreshed. As the morning wears on, however, the effect starts to wear off like a cheap deodorant. Josh had a comfortable night by all reports and remains stable. He is on a ventilator and he’s intubated. The ventilation isn’t essential as his lungs are working but he’s so heavily sedated that he needs help. The same nurse is on duty as yesterday and is very helpful and communicative. Josh has a catheter now – a tube that’s inserted where men would least like a tube inserted that leads to the bladder and allows urine to drain freely and be measured accurately. He needed to lose fluid overnight and he would appear to have emptied his bowels too – so glad I missed that one. It’s going to take a while to re-adjust to life on a different ward and it won’t be easy. Aside from the medical and emotional worries, we’re faced with a purely practical one. There is nothing to do on the ward. Mobiles aren’t allowed. Everything that needs to be done for Josh is done by his nurse and the combination of encephalitis and sedation means there is no interaction with him whatsoever. It’s as if we’ve gone from one extreme to another. You just sit in the middle of the ward in a chair and read, or write maybe, which is what I’m doing now. The feeling of helplessness is immense and weighs heavily on your heart. When I do go near the bed to stroke Josh’s head or speak to him inanely about football, I just start to lose it and have to sit down again. I disappear before ward round as it’s the only time you can’t stay for confidentiality reasons, and take a stroll to the British Museum. After visiting Ancient Rome, Greece and Egypt I’m busy reading about nomads when I realise that’s exactly what I am at the moment. It feels like I don’t belong anywhere. Not in PICU because I’m redundant. Not upstairs on Fox where I sit in the empty room I used to share with Josh and where everyone looks at you with such love and sympathy when you venture out, it just makes you want to break down and cry. I move some of our things down from Fox into the lockers they have on PICU. They tried to give Claire and I two together, 18 and 19, but one’s at the end of one row and the other at the start of the next, so they couldn’t actually be further apart. It’s like booking airplane seats that are adjoining numbers and finding there’s an aisle between you. It doesn’t matter of course, but being kept apart even in our lockers is far more ironic than Alanis Morrissette singing about finding black flies in Chardonnay or rain on your wedding day. There’s a pillow famine in PICU so I smuggle a couple off Fox ward - although strictly speaking they came from Princess Royal, so they’re more ours than theirs. I sit and try to read the paper but don’t manage it. It’s all about football and all I can think about is what I can’t tell Josh. Football is everything to him and right now he has no idea that Man Utd won a friendly 7-1, that their new Mexican signing scored with his first touch or that they play Chelsea tomorrow at Wembley. He missed most of the World Cup knockout stages. I told him Spain won when he had some comprehension of what was going on, but I doubt he will remember that. It’s heartbreaking in a way you can’t describe. It’s as if there’s just a shell of Josh lying on the bed with nothing of him left inside. For now though, at least, we’re in a position where we could still get him back so we’re not about to give up hope. I go for another wander, this time to my favourite all-you-can-eat Chinese and lose myself in salt and pepper chicken wings, crispy pork, hot and sour soup and seaweed for an hour, but everywhere I go just reminds me of Josh and all I can think about is him lying there at the hospital. Life without my Football and Playstation buddy doesn’t even bear thinking about. I’m back by 3pm but I’m not sure why. There’s still nothing to do other than get upset. I talk to the nurse looking after him to change the mood, She’s always worked in ICU’s including an adult burns section. I can see the attraction of one-to-one care but can’t help feeling that it must be hard seeing the patients leave her care before they fully recover and she says yes, it is - although they have reunion parties once a year for patients who’ve been on the ward. She sees many head injury kids that she thought would never recover running around at full pelt, laughing and playing. I can see how that would make a difference. While we’re talking Josh’s feet start to twitch and when she checks his eyes his pupils look dilated. They’re worried he’s having a fit. The first doctor called brings over another doctor. I explain that it’s happened many times before and I’m less concerned. The pupil dilation is a sign of his encephalitis as is his foot tremor. On closer examination they agree that it isn’t a fit as it doesn’t stop when an anti-seizure drug is administered and we eventually manage to stop it by re-adjusting his feet. They chat with me for some time, asking about Alex which is in our family history. They explain a few things that nobody previously has about Josh’s condition and they believe it’s highly unlikely recovery will be quick. The senior doctor tells me that they’ll keep him comfortable here and now would be a good time to go home and enjoy some family time with Claire and Joseph, but the reality is it’s not a family without Josh. Even though we’re only an hour or so away, we’d hate it for him to be alone if anything happens. Maybe we’ll reassess after the MRI results on Monday, but for now they’re stuck with us I’m proud to say. I know some people have been finding this blog increasingly difficult to read over the last few weeks and I make no apologies for that. It’s coming up to a year since I started it and back then it was all about hope and finding humour in the face of adversity – something I’ve always found can get you through anything. Things have changed. It’s all about survival now. It’s not that I’ve suddenly become an old misery guts, I was always one of those, it’s just that there’s very little to make light of at the moment. We still smile and laugh, but the general outlook is far bleaker and that’s bound to come through – and so it should. Josh is fighting for his life right now and all we can really do is hope that all the love and support he’s been getting from friends and family, doctors and nurses and even complete strangers counts for something and we get our Joshie back one day soon. I’m planning to record every single bloody Match of the Day between now and the end of the season if necessary and we’ll watch them all back to back when he recovers. The rest of the day follows a similar pattern of popping down to see Josh and wandering around aimlessly. I bring Claire up-to-date as I walk around London as dusk falls and the clubbers and theatre goers descend on the city. It makes me feel more alienated than ever. Even walking back onto Fox ward feels different. Seeing the other patients sitting up in bed or playing on the floor with their parents, full of hope for the future feels a million miles away from Josh lying downstairs on all those machines. Hopefully sleep will come easily again tonight and tomorrow will be brighter in every way.
Sunday 8th August
Slept well, but woke around 6am. Managed to soak myself for a few minutes in our sink sized bath then popped downstairs to see Josh before going out to get the Sunday papers. In truth, I didn’t even know it was Sunday until I walked into the newsagents. Josh looks comfortable and had a settled night. I return an hour or so later to introduce myself to the day nurse who took over at 8am. He opened his eyes for a couple of seconds just before I arrived but wouldn’t have been conscious of doing it as he’s too heavily sedated. I spend most of the morning avoiding going back to see him. Walking through the automatic doors onto the ward is tough, to say the least. There’s a small Japanese garden on the roof terrace of the fourth floor next to the intensive care units. It’s in desperate need of renovation, in fact work appears to have started but been stopped in mid-flow. Sitting out there, I can just make out his bed through a window about 40ft away. It’s comforting without feeling uncomfortable and I spend a good hour out there reading before I open the door and step back into the hospital. A young couple immediately come rushing over and ask if I’m a doctor. Given that I’m wearing a t-shirt, shorts and crocs and carrying a copy of the News of the World, I’d have thought the answer was obvious. Thankfully they don’t want me to perform a life-saving operation, but just wanted to know if parents were allowed onto the roof garden as well as staff. My guess is yes, given that the door wasn’t locked and there was no sign. Let’s hope they don’t get banned from the hospital for following my example – or worse still locked out. Two of the BMT doctors are with Josh when I return and we chat about the plan again. His steroids have been reduced further and it’s possible they’ll try and wake him up once they’ve got the results of the MRI. One of them will be back at 3pm should Claire want to discuss anything with them. I sunbathe and read in Russell Square until Claire arrives at 1.30pm. We sit down at the cafe in the park and have lunch. It’s very good and reasonably priced and we enjoy feeling the sun on our faces and each other’s company for the first time in over a month. Back at the hospital, we dump Claire’s bag on Fox ward and walk into PICU. Claire is understandably apprehensive and sobs when she first sees Josh. After a few minutes, she’s composed herself and is happy to stroke his head and say hello. The BMT doctor turns up, but there was nothing said that I need to add at this point. It’s a case of waiting to see what happens. I’d looked into accommodation for us earlier, just as a precaution, as I wasn’t sure how Claire would feel about sleeping back on the ward without Josh. She seems to be okay with the idea, although we can get an emergency room off site if she changes her mind. We’ll make a call on what we do long term after the MRI results. Getting a family room, so we can bring Joseph up and all live here together, is an option and something we’ve done before – but it’s probably not in Joseph’s best interests. My bags are laden with stuff we no longer need up at the hospital anymore and slow me down as i walk briskly across London to catch a tube to Victoria. I pick Joseph up from Claire’s mum and dad’s and he’s on great form after having an afternoon of hide and seek, football, colouring and drawing. Claire calls to say she’s finding everything just as weird as I was. She’s managed to get some fresh air from time to time, but spent more time with Josh than I dared to and gave him a little moisturising massage before going up to bed. Like me, she sees him lying there looking all peaceful and rested and keeps thinking he’s not really ill at all - certainly not seriously enough to warrant being in PICU. The truth is that he’s every bit as ill as any of the children on the ward and just as, if not more, vulnerable.
