Sunday 29th August
After staggering upstairs at around 5am after my Brazilian cocktail fiasco I’m woken up by Joseph just two hours later. He’s full of energy and raring to go but my head is still thumping to a samba beat and I can hardly move. Luckily the TV comes to my rescue and Joseph gets to watch all his favourite programmes while I enjoy a rare lie-in next to him. The majority of the day is spent at Claire’s brother’s house where we’re not only fed but well watered too - spending over 2 hours swimming in their pool. Any faint hopes that this will have exhausted Joseph prove unfounded and it’s getting on for 9pm before he finally nods off. Claire’s had a good day too, sitting with Josh and reading Horrid Henry to him and listening to music. His tremors have lessened but he is still crying out rather a lot – especially when nurses come into the room, which is hardly surprising. Claire’s worried that he might be hallucinating again. It’s as if we’ve gone back a month to just before his GVHD kicked off and we lost everything about Josh that made him Josh. It’s still early days but if Robbie and Gary can kiss and make up, then anything’s possible and maybe Josh really is ‘Back for Good’.
Monday 30th August
Apparently today is a Bank Holiday, not that we’d know it in our household. Having not actually gone to work for 2½ years and with Joseph off school, it’s a miracle I ever know what day it is. It’s Wednesday, right ? With a rare clear blue sky beckoning when I pull back the curtains, I decide we should go somewhere today and Joseph gets to choose. He wants to go to a zoo and after a quick Google, we come to the conclusion that the best option is Chessington. Not only is it the nearest, but with a 2 for 1 ticket it’s actually the cheapest too. The traffic was kind to us and we were there in less than an hour. Highlight of the day was undoubtedly seeing the Tigers being fed with huge chunks of meat tied to the top of 10 ft posts. Lowlight of the day (if that’s a word…) was not being able to use Josh’s disabled card to avoid all the queues. The last time I waited an hour for just two minutes of excitement was back when I was a teenager on a hot date. Most embarrassing moment was in a packed Gents toilet when Joseph shouted out ‘ Yours isn’t much bigger than mine, Dad’ when he noticed his child’s urinal was almost the same height as the adult one I was using. Context is everything. It was a terrible shame to only have half the family on the outing, but at least it meant it was totally Joseph’s day rather than us constantly having to compromise due to Josh’s illness. When we left around 5.30pm, Joseph told me he was ‘going to have a little nap in the car’ and true to his word was fast asleep within seconds. The journey home was even quicker than it was coming, despite mistakenly heading for Esher. Claire hasn’t had such a good time, unfortunately. Last night Josh was having bad hallucinations and screaming like a banshee. He managed to shrug off the effects of every sedative they gave him until finally succumbing to sleep at 5.30am. He then slept for over 12 hours and was awake and hallucinating again when Claire called me at 9pm. I can’t remember if I ever mentioned that two of the children who were on the BMT ward at the same time as Josh didn’t make it. Claire spoke to the mother of one of the children today. Her son also had JC virus on the brain and recovered from it, only for GVHD of the liver to take his life soon afterwards. She described all the same symptoms Josh has, from paralysis to hallucinations, so recovery is certainly possible unless further complications set in. Two children who were on the ward when we were re-admitted in July have also failed to survive. Our hearts, thoughts and prayers go out to all their families. May they all find some solace in their grief…
Tuesday 31st August
Having 3 days at home rather than two makes a real difference. You stop running round like a headless chicken long enough to feel like you actually belong somewhere. Having said that, I’m dreading going back to hospital now after feeling so positive when I left. Josh is sleeping when I arrive but stirs soon after and immediately starts screaming. There’s no recognition of me whatsoever and nothing either Claire or I can do to comfort him. The doctors are visibly distressed by his screaming after just a few minutes in the room. Their plan is fine and sensible but experience tells me it’s doomed to failure. Start with Paracetamol in case it’s pain, then try oral morphine in case it’s severe pain or irritation caused by withdrawal from the morphine, then as a last resort a sedative called Medazalan. None of it works. Not even for a second. What’s it like standing over him for 17 hours while he screams ? Without wanting to appear melodramatic here, it’s Hell. Not the Hell described in Dennis Wheatley novels or depicted in Hieronymus Bosch paintings, but something far, far worse. Nothing comforts him. I can’t sit down or even put my fingers in my ears to block out his screams for fear of him pulling his Hickman line and peg out of his body. I try strapping his arm in a splint or holding it down but the moment it’s released he makes another grab for them. I’m convinced he’s not in pain, but some kind of cerebral irritation coupled with immense frustration. Think of how frustrated you get playing Charades when nobody quite gets what you’re acting out and you can’t open your mouth to tell them. Now multiply it by a million or so and it still won’t even come close to what Josh is experiencing. It must be even worse after the glimpse of hope he had last week. It’s heart-breaking for us too. Thursday and Friday was like seeing the sun momentarily break through the clouds on a dark, overcast day. At least we now know there’s something of Josh still in there, but we have no idea when we’ll get another glimpse of it or even if he’ll ever shine again.
Wednesday 1st September
I said 17 hours back then and that’s how long it was before Josh finally stopped screaming out of pure exhaustion. Lord knows what the neighbours think, they’ll probably have an ASBO out on him before long. At around 3am the nurse called a doctor in which normally is a waste of time as they’re not familiar with Josh and rarely take responsibility for any change in medication. Tonight, however, we’re in luck and get one of his regular consultants who’s just returned from holiday and is shocked by the screaming. He desperately wants to do something to help but is unsure what. After discussions with neurology, who are also running out of ideas fast, he tries another calming drug used for psychiatric care. Again it does nothing whatsoever. Claire had found that listening to Heart FM had helped him to relax the other night so I give it a whirl around 4am, but hearing Lionel Ritchie crooning‘Dancing on the Ceiling’has us both climbing the walls and it goes off straight away. At 6.30am it sounds like Josh is tiring, so when they bring in another drug to sedate him I tell them to hold off. 30 minutes later he’s finally asleep although still clearly suffering. It’s too late for me to sleep so I don’t bother trying. When the doctors come in I debrief them and they go away to rethink what they try next. One of Joshie’s favourite nurses is looking after him today but she’s not on her best form by a long shot. His blood pressure cuff is left on and, for no reason that anyone can fathom, it’s set to take his BP every 15 minutes. Then it alarms and starts to rouse him. When I ask her why it’s on, she just turns it off. The readings are never accurate anyway, so they always end up doing them by hand with a different machine. The lumbar puncture is going ahead today and after a visit from an anesthetist, the nurse suggests we take him down in his own bed. This proves the wrong call as they bring up a special bed for him which they can tilt quickly in an emergency but she sends it away. Forms that should have been filled in haven’t been, his date of birth is wrong on his new armband and his Hickman line is blocked so they can’t sedate him without putting in a canula. Luckily I overhear the last comment and get them to take him off his Ketamine which isn’t even turned on anyway and they sedate him down his line as planned. Thirty minutes later we wheel him back to the ward. He has an enormous black bruise under his chin. It’s presumably due to his platelets being so low and being manhandled into a foetal position for the lumbar puncture. Our friendly neighbourhood CSP also spots it when he pays us a casual visit later on that afternoon and tells us it has to be reported even though it’s not an issue. Josh is still crying out but remains much more relaxed than yesterday and it’s far more bearable. Curiously there’s no lunch waiting when we come back up and there was no dinner yesterday either so I haven’t eaten in 24 hours. I try and get someone to sit in for me so I can get some air and grab a sandwich but there’s nobody about. It’s a bit of a comedy of errors at the moment. Claire spotted a very good nurse try to give him triple the dose of the drug that gives him tremors by mistake the night before. This afternoon nobody seems to know how to take his blood pressure. One nurse spends 20 minutes trying to get a reading before I notice that she’s using the cuff from a different machine to the one that he’s attached to. Josh is moaning loudly throughout all this but not screeching. He’s not really sedated at all to speak of now, just plain knackered. At 4pm I manage to grab the food man to find out what’s happened to our meals. It appears one of the nurses keeps cancelling them for some bizarre reason. I have a word and soon after a pizza slice appears. The doctors have been trying to find a neurologist since 10am but have had no luck. Undeterred the search continues. Then a strange thing happens, Josh suddenly falls into a deep sleep and quietens down completely. This is wonderful news for me, but not the best possible timing as soon after our doctor appears with one of the elusive neurologists to see Josh. It’s not just any neurologist either, it’s the Jose Mourinho look-a-like that did his lumbar puncture last month. We talk outside as there’s nothing to see anymore. In summary, now we’ve taken Josh off a number of drugs and sedatives that don’t appear to work, we’re going to double up his dose of the ones most likely to calm him down. It’s a commendable plan and hopefully will lead to a good night. As for Josh’s condition, they are still unable to offer anything up other than a few theories. Steroids will be halved again on Friday when he will have another stem cell transfusion. They are looking to swap his anti-convulsion drug for a different one with less side effects tomorrow, if a suitable one exists. All-in-all it’s been a reasonable day given that Josh’s been under anesthetic, in surgery and had a platelet transfusion. It’s gone 9pm now and he’s still settled. The night shift has arrived and we’re in particularly good hands this evening. Come on Mr Sandman, do your stuff...
Thursday 2nd September
You know those nights when sleep is so satisfying that you feel you’ve slept for days even though it’s only been an hour or two ? Well, this was one of those. Not a murmur out of Josh until around 2am. The plan to give Josh a double dose of Medazalan as soon as he started to sound distressed went out of the window then because the night doctor felt he wasn’t distressed enough to warrant an illegal dose - even though he didn’t come to see Josh and it had already been cleared with his superiors. I can understand the reluctance but I knew what would happen and, sure enough, the single dose didn’t even touch the sides and Josh became far more agitated and the screaming started again. This left us with a real dilemma. The doctor suggested we give him the double dose on top of the single dose we’d already given, which to my mind is a triple dose. It was 3am in the morning and I know I was tired, but surely giving three doses of drug that should only be given every 12 hours is a bit mad given the same person was worried about giving a double dose in the first place. We discuss this for far too long and in the end I tell him extremely politely, considering the hour, that if we don’t do something soon, nothing will work. We go for a sedative and by 5am Josh is asleep again and so am I. When I wake at 8am he’s been changed and on oxygen again. There’s nothing better than a pro-active nurse.The next dilemma is whether Josh is wet or dry and whether he needs to lose fluids or gain them. It should be simple but, of course, it’s not. His blood results are telling us the opposite of the puffiness round his eyes. After a few more tests and samples the swing-o-meter edges towards wet so they’ll be giving him something to empty out that bladder. Whoopee ! In the meantime, the Jose Mourinho of neurology is back to see how the evening went. The Special One is about as happy that his plan was ignored last night as I was. He explains how they don’t understand the drugs his department uses so they are always afraid of upping the doses. He then blows his ever increasing credibility by saying we should give Josh anesthetic regularly every 4 hours, which is clearly plain loco. At 3pm I mange to escape for an hour for a work meeting. It’s only an hour’s chat in a coffee shop but comes as light relief after spending the last 48 hours cooped up in a small space in relative darkness with no food. I was beginning to feel like a Chilean miner, except they’re getting better food according to what I just read. When I return there’s nobody sitting with Josh and his oxygen level has dropped below 94%. The curtains are undrawn and he’s baking from the sun shining directly on his face. I wouldn’t have minded but there’s two Healthcare assistants sitting chatting outside. I turn the oxygen on to get Josh back up to 100% and unleash some hot air on the nurse. Josh has gone from one extreme to another and has now been asleep for over 24 hours now apart from a few hours early this morning and a visit from the physiotherapists who made him sit up for 10 minutes. Our favourite Physio is leaving us today for pastures new. I silently commend myself for not making any gags about her ‘finding a new position’ and give her a hug instead. The deep purplish bruise under Josh’s chin has spread and now looks Abraham Lincoln’s beard. Must remember not to take him to the theatre when all this is over. The results of the lumbar puncture are in and it’s good news. There is no sign of the chicken pox in his brain and, whilst the JC is still there, it was more difficult to detect which suggests there’s less of it. This fits the picture of his brief ‘renaissance’ last week. It’s slow progress but as long as it’s progress we’re more than happy. We hold off on sedating Josh as long as we can as I’d much rather he sleeps of his own accord before we give him any help. It’s 10.30pm before he starts to get agitated by which time I’ve watched ‘ In Bruges’ which was great fun. The double sedative dose doesn’t work but I finally manage to persuade the nurses to stick to the plan and two hours later he gets a double dose of the psychotic drug. It works instantly and he calms down, stops pulling his wires and drifts off to sleep. Unfortunately it only last a couple of hours and he begins to moan and thrash again at 3pm. He won’t keep his oxygen mask on and pulls the end off his peg. I ask for a doctor to come before it gets too bad to stop but thanks to an uncommunicative nurse it’s over an hour before I see one. Two turn up, actually. They try to help but don’t know what to do and just stand and look at him not saying anything for 10 minutes. Almost anything I suggest they say they could try, but I just want to know what the plan was and if we can stick to it. Eventually they settle on another dose of the sedative we gave earlier and it finally arrives at 5pm by which time he’s too far gone to stop. Unbeknown to me, it was only a small dose anyway, so it was never going to work. Instead I have to stand over him for another two hours then finally sleep for one. When I wake up at 8am his oxygen’s been turned off and he’s really struggling with his breathing. Not the best night of nursing by a long shot…
Friday 3rd September
There was a plan last night, it just wasn’t followed once again. There’s a huge reluctance by BMT doctors and nurses to use drugs or doses recommended by neurology and vice-versa. It’s understandable as they’re not familiar with them, but it doesn’t help Josh or my beauty sleep. There’s a big ward round planned this morning with renal and neurology joining the parade and hopefully not raining on it. Actually, neurology already have as they’ve just postponed at the last minute after previously insisting the meeting went ahead in the morning. I take advantage change Josh, give him a full body wash and shampoo his hair. Rather than agitate him further it seems to relax him momentarily but he’s soon pulling his lines and shouting out again. Ward round happens without neurology and the renal team are now making a separate visit too. Claire is at the hospital by then which is great as I won’t have to debrief her. The team’s plan is to hatch and write down a definitive plan for the weekend to ensure Josh isn’t distressed. Easier said than done but here’s hoping. His calcium level is still very high and the renal team will be adding several new drugs to ensure his calcium goes to his bones rather than building up elsewhere. This could cause confusion coupled with Josh’s encephalitis and be contributing to his inability to communicate. Everything’s still just theory at the moment but the lumbar puncture results were definitely encouraging, as was Josh suddenly talking last week – although it already feels so long ago. I’m off home straight after the meeting and just have time for a quick visit to the gym, where both boys and girls clocks have now been synchronized. Then it’s off to school to pick up Joseph who went back today. Quite what the logic is for term to start on a Friday is anyone’s guess but seeing him in his uniform reminds me that Josh went into hospital before Joseph broke up, so he’s already been there for the entire school holidays. Speaking of Josh, he and Claire have had a busy afternoon by the sound of things. There is now a plan in place. The neurologists reassured both BMT and Claire that they regularly use bigger doses of many of their psychotic drugs without disastrous consequences. We are re-introducing Risperadal ( the drug that caused the tremors) in a smaller dose twice a day. If the shakes return they’ll switch it for something similar. At night we give the bigger doses of the drugs we used last night but both at the same time. In theory this will work for 8 hours and take us from midnight through to the morning. Sleep, glorious sleep ! If that fails, an IV version of Medazalan will be given. This can cause respiratory failure similar to what sent Josh into PICU last month, but there is an antidote that can be given that reverses the condition. It’s a tough old plan, but we can’t go on as we are. They are going to slowly reduce Josh’s anti-seizure drug over the next 5 weeks too as irritability and agitation are possible side effects. Yep, 5 weeks - you did read that correctly. We are definitely in this for the long haul. Claire asked how long encephalitis can go on for, and as we suspected Josh’s case is very rare indeed and could go on for many, many months. Normally, acute viral encephalitis only lasts a few days or so. Not so in our case obviously, given that we’re already 8-9 weeks in and counting. Blimey, the Chilean miners could be out before we are…
