Saturday 14th August
The first thing to tell you is that we’ve finally been told what we’ve long suspected the future holds and it’s not great. As I arrived at the hospital after dropping Joseph off at yet another friend’s house, Claire told me that the one doctor we’ve always found a little tactless and opinionated is on duty today. That’s not to say we don’t like him, as we’re generally big fans of straight talking, but his bedside manner is non-existent. Seconds after walking into the room he tells us that he doesn’t believe the chicken pox virus is the culprit here and that it’s the virus that we dare not name that’s doing the damage. The reason I’ve never named it, by the way, isn’t that you’ll all recognise it and think OMG. It’s quite the opposite. Like us, you won’t have a clue what it is but if you Googled it you’ll wish you hadn’t. Ever since they found it in his brain we’ve been terrified of it running rampant but at each stage we’ve been told it’s highly unlikely. It’s seemed to fit his pattern of decline far better than the VZV theory from what we’ve read, but everyone at GOSH has either been in denial or protecting us, or both. The doctor goes on to summarise what we’ve also believed from the start - that when he increased Josh’s steroids to battle his GVHD rather than put him back on ciclosporin, it lowered his immune system enough to allow this virus to get a foot hold. There are drugs that can help, but essentially his immune system has to fight it and it can only do that if it stays at a consistently high level for some time. With the steroids coming down slowly this could happen and we have to carry on believing it will. What we’re hearing for the first time though, is that if he does recover it’s likely to be a very long, slow process. We’re talking in months at the very least, possibly years. In the meantime, his lungs are a problem and he’s currently on 15 litres of oxygen to maintain the saturation he needs. When he came back from PICU he only needed 1 litre. He doesn’t appear to be struggling too much though which is good. Physiotherapy is really important in helping him breathe more easily and one of Josh’s favourite physios comes up to bang on his chest and loosen whatever gunk is sitting in there. Josh coughs a little and opens his eyes. He’s been doing this quite a bit of this since the pain started to decrease and his morphine was lowered. He seems to be more alert generally too, which is why Claire had to put a splint on his arm to stop him ripping his mask off every 5 minutes. His face and one of his eyelids are sporting cuts from where either his nails or his name band have scratched him as he’s clawed it away. Claire leaves around 4pm and soon after she’s gone I change Josh’s position in bed along with his nappy. There’s now a pile of 6 or 7 weeks of unread Match magazines in the corner of the room and the first days premier league fixtures have just been played. The last thing he knew. The World cup was in full flow. I’ve picked fantasy league teams for me, Joseph and Josh ( in his absence ) and hope I’ve done him justice as he normally trounces me. The general pattern for the day is that he starts to moan and stir in his sleep then suddenly becomes really agitated and cries out for long periods at a time. Sometimes we try to calm him down with morphine, but as I’m convinced he’s not in pain we mostly try to avoid it. This generally means I have to pin his arms down to the bed and utter reassuring words he’s unlikely to comprehend and even less likely to believe while he writhes around like a wild animal trying to escape its predator’s clutches. This can take anything up to 90 minutes and is as distressing as anything I’ve ever experienced – not to mention physically draining and potential suicide for a bad back. The night brings no let up and Josh’s oxygen level drops to the point where there are 3 doctors , 3 CSPs and a nurse in the room discussing what to do next. We decide on putting a narrow tube down his throat to encourage him to cough. It has the desired effect and comes up covered with blood which we think is old from when he was intubated last week. They ask for an x-ray which happens in the room around 11pm which shows a slight improvement if anything on the last one. He settles down around midnight after another attack that started I had to move him for the radiologist.
Sunday 15th August
No real changes overnight as the wrestling bouts continue every couple of hours well into the morning and neither of us gets much sleep. I spend most of the night kneeling on the floor next to the bed holding him down as it’s difficult to bend over him while standing and my back and neck are starting to play up. By the time I crawl back into bed it’s gone 7.30am and too late for sleep. I start watching the early morning Match of the Day repeat but soon drift off, waking just in time to see Everton beaten 1-0 by Blackburn. Sir Alex Ferguson has tipped the Toffees as dark horses for the title, but they play more like cart horses for most of the first half. They’re not helped by their new fluorescent pink away strip which would have had Josh laughing his head off. Getting out today may be difficult as Josh has just the one nurse and putting up his IVs and giving him his orals is a full-time job. Josh had another blood transfusion yesterday and they struggled to find time to fit it in. He has two leads on his Hickman line and it’s just not enough with TPN and Morphine running through them most of the time and over 20 different IV drugs prescribed every day. Josh’s episodes continue every hour on the hour until 11am by which time we’re both exhausted. One of the doctors adds another drug to his oral list to try and calm him down without sedating him too much. Claire calls and we both have a good old sob together. She remains inspirational on every level and, even though we’ve spent most of the last 2 years apart, we still feel as close as ever. Only seeing each other 2-3 times a week for an hour means it’s hard to find time to cry. We can’t do it in front of Josh together, even though it’s highly unlikely he’d ever know - it just feels inappropriate. We can’t cry in front of Joseph when we’re home alone with him either, so we save it up until we just have to let it out to a few close friends and relatives. Lucky them ! Claire’s off to Brands Hatch today with my brother and his family after an overnight saga with our alarm which started with a lightbulb blowing in the living room and ended up with full blown burglar and smoke alarm bells ringing everywhere. It’s far too complicated to explain here, but everything’s fine now and neither the police nor the fire brigade turned up – although I suspect Claire wouldn’t have been too upset if 5 burly firemen had turned up on our doorstep brandishing their hoses and choppers. Lunch arrives. I vaguely remember ordering it a few days ago without realizing it’d be me eating it. Roast beef, Yorkshire pud, mashed potatoes, gravy and peas. It’s surprisingly tasty and if I’d had a sachet of English mustard or horseradish to accompany it, I might even have passed my compliments to the chef. I give Josh a wash at 2pm knowing the physio’s due at half past, so if I can’t get him back to settle it doesn’t matter. She’s only 15 mins late but by then Josh is asleep, exhausted from fighting me again. She works on his chest and we turn him onto his right side to sleep. After 10 minutes of handholding and grunting ( she’s left the room by now just in case you were wondering who was doing what to who) he’s asleep. His nurse volunteers to sit with him so I can grab some fresh air. When I get back he hasn’t moved an inch, although the doctor has been round. I was only gone 30 minutes, so you’d think he could have waited for my return. All he did, according to the nurse, was make a redundant comment about Josh’s oxygen level. As soon as the nurse leaves I notice Josh’s bed and nappy are soaking wet. As I change him, he wakes up and it’s another 30 minutes before I’ve settled him which is nothing compared to the next session where I have to pin him down for 90 minutes before he finally succumbs to sleep. It’s a wretched thing to have to do. It’s like torturing your own child and I can’t think of anything much worse at the moment. He’s clawed his eye again and, as his platelets are so low, it’s swollen like Rocky Balboa’s. I request a doctor to witness his distress and make a call on what the problem is. There’s a huge difference between treating GVHD and treating a reaction to morphine and everyone needs to be sure of what we’re dealing with here. It’s over an hour before anyone turns up by which time there’s nothing to see but the aftermath. It’s a doctor I haven’t met before and he’ll put it in his report but keeps saying it’s probably frustration at wearing a mask which it most definitely isn’t. I explain that he doesn’t appear to be in any pain and that we should stop the morphine but he wants to wait until it’s discussed in the morning and it’s not his responsibility. Josh is in a terrible state and nobody seems to be doing anything about it. They wouldn’t let me watch him being intubated last week in case I got distressed and yet I’m having to go through this on own with him and it’s a million times worse. I’m teetering on the edge of a very dark place at the moment. Tired, frustrated and feeling permanently sick in the pit of my stomach, I‘m finding it hard to imagine tonight ever ending and for the first time in nearly 2 years of living in hospital all I want to do is run away. Luckily for Josh, I’m too tired to move and can’t even throw myself out of the window as they don’t open.
Monday 16th August
Things did get a little brighter, but only after becoming far worse. Josh’s attacks reached such high levels of intensity and with so few gaps in-between that I almost stopped functioning completely. Every hour I’d hold him down for an hour until he was too tired to fight and he’d sleep for an hour and then the whole thing would kick off again. As a child I remember watching an old b/w episode of The Avengers where they were trying to escape from a village in a car. Whichever way they turned, however far or fast they drove, they always ended up in the same spot. It still gives me nightmares and now I feel like I’m living it. Our nurse was fantastic again last night and we talked about what it could be that’s affecting Josh. It feels different to what has gone before and my worry is that this is how his brain is now and the confusion is simply too much for him to bear. The nurse by-passes the night doctor, who is unable to make any major decisions, and requests an anesthetist. Two hours later nobody has turned up but I’ve finally got Josh back to sleep and climbed into bed. While I’m asleep the CSPs are called up and the nurse briefs them. They see the situation as unacceptable and suggest a drug that’s administered inside his mouth through the capillaries in his cheek. It will act faster that way. They also stop his morphine immediately along with another drug we know he’s had a reaction to in the past. The upshot of all this is that when I next wake up at 5am we manage to settle Josh within 15 minutes and I don’t stir until 9am. Josh is still asleep as I’m greeted by a nurse I’ve not met before who gives me a big hug and says she knows I don’t like tea or coffee but how about a squash ? They brief them well in here ! It’s all a little disconcerting as I’m still half asleep, it’s dark, I’m in my PJs and she’s wearing Claire’s favourite perfume. Josh starts to have an attack soon after and the ‘Paloma Picasso’ scent wearing nurse scurries off to call a doctor to witness it. She returns triumphantly a few seconds later with two doctors in tow. They need to sit down and discuss next steps but in the meantime we give Josh the wonder drug again to calm him down. Unfortunately it’s less of a wonder now he’s had a rest and it takes another hour of wrestling with Josh before he’s asleep. While that’s going on an occupational therapist turns up saying the doctors want to put Josh in a wheelchair so the physios can work on his chest. Once again this is well meaning but nonsense. We can hoist him into a chair but he won’t be able to sit in one – besides which there isn’t one that fits him anyway. Everyone in the room agrees this won’t happen for some time and while Josh continues to scream and writhe around and I continue to hold him down, she takes her tape measure out to measure him. This is also rather disconcerting for obvious reasons but there’s a wonderful comedy moment when she pulls on the end of her shiny, hi-tech tape measure only to discover there’s nothing inside it to measure with and has to skulk off in search of a good old fashioned one. Our resident physio arrives soon after and she also finds the doctors’ wheelchair request a trifle premature. Seeing the state Josh is in, she makes good, sensible suggestions and manages to work on his lungs. He’ll have a platelets transfusion today so she can pat them a little harder tomorrow without leaving him badly bruised. Josh is covered in bruises as it is, on his arms in particular from being moved up and down the bed in the last few days and from me holding him down. He finally settles an hour or so before Claire arrives. Our nurse offers to sit with Josh and do her paperwork while we go to the park together and catch up in the London sunshine, I’d intended to be around when the physio returned but by the time we get back time’s a bit tight and I have to leave, Back in Bromley I pop into a second hand game shop and find exactly what I’m looking for – two pre-owned Harry Potter PS2 games for Joseph at a knockdown price of just £2.50 Joseph’s had a great day with his grandparents learning French, drawing and even ate all his lunch. He’s deserves a treat and is ecstatic. We play a level of them both before bed after I’ve mowed the lawn. When Claire calls there’s nothing new to discuss other than a plan the doctors have to try a revolutionary new stem cell transplant that’s being developed in the Netherlands. Apparently it’s a non-toxic treatment that carries no risk and could stop his GVHD for good. Given that they’re yet to actually confirm Josh has GVHD, Claire is rightly a little hesitant. There’s been no let up at her end with Josh continuing to be unsettled and she’s shattered. ‘Time for bed’, said Zebedee.
Tuesday 17th August
News from Claire is that it was a shocking night with no let-up whatsoever. The sedative that worked the night before doesn’t seem to be doing anything now and Josh hasn’t stopped moaning and crying out in over 20 hours. And yes, you did read that correctly. Claire is understandably at her wits end and has been in tears for much of the day. We have no idea how much he is aware of or how much he is suffering, we just know that seeing him and listening to him is devastating and not something you’d expect to have to go through in this day and age. In the night his oxygen saturation dropped drastically. Claire had a real job getting anyone to do anything about it. Generally the doctors are concerned if he drops below 95% for too long, last night he was in the seventies and falling and the nurse was just staring at the screen. The CSPs were at Josh’s bedside again overnight and Claire and I can’t praise them enough. The one on duty last night has been doing the job for 27 years and loves his work, mostly because they can make a difference. Unhampered by the restrictions most doctors and nurses face these days, they can use their seemingly infinite knowledge to make things happen. Even they find Josh a complete mystery though. He never reacts quite the way they expect and there’s little they can do to settle him this time. At home we have a quiet day. I manage to get a cancellation for the kids club at the gym for Joseph and I put myself through a quick workout while he plays. My back is just about bearing up at the moment but feels like it could go at any time. For the record, there is now nearly an hour difference between the main clock and the ladies clock. According to their clock I picked Joseph up 10 minutes before I actually dropped him off which is no mean feat. After that it’s swimming for the two of us followed by Tesco and McDonalds. The afternoon goes quickly as we play games and lose all track of time. Claire’s update comes late afternoon after she manages to catch up on a little sleep once Josh finally succumbs to the latest drug they’re using to try and calm him down. This one is meant to be quick acting and is used on psychotics in A & E. It was suggested by one of the top neurologists that Claire asked to see. She is also seen by the neurologist who saw him the day he was admitted and she can’t believe how much he’s declined. An EEG today still suggests that none of the damage to his brain, so far, is irreversible. There were other insights from the neurologist but nothing earth-shattering so I’ll fill you in on those in the next entry. Whilst the doctors on Fox are undoubtedly warm, dedicated and astonishingly good at their jobs, you can’t help but wonder if they’re out-of-their-depth on this one and should have been seeking more help from other departments. Only time will tell,,,
