Thursday 15th July
Just to expand a little on yesterday, Josh’s seizures came as a total shock to everyone as he was recovering well. Chances are they are down to vasculitis ( inflammatory destruction of blood vessels) in his brain. The intensive care emergency team were fantastic and came back to check on him at the end of their shift. They are both as camp as Louie on Pineapple Dance Club and have a terrific sense of humour, which hopefully serves them well in such a tough job. We remain hopeful Josh’s brain wasn’t damaged, just traumatized. Sitting on the bed watching him lying there with so many wires attached to him is so hard after what happened to Alex. Hopefully, he’ll pull through this as he is such a fighter. Both Claire and I stayed the night and it was just as well. He vomited violently at one point when one of the senior nurses was here and she just froze like a possum in the headlights. Luckily I’d removed his oxygen mask a few minutes before and had it wafting, otherwise it would have filled up with sick. Claire and I managed to sit him up to avoid the vomit choking him. The vomiting and diarrhea is par for the course with his viruses, as are the hallucinations he started having today. He keeps pointing across the room and cowering in fear or suddenly bursts out laughing for no apparent reason. He’s talking far more today which is good news, although little of it makes sense at the moment. He suddenly comes out with sentences like ‘ We have to get on that bus right now’ or ‘ Are you practicing, Dad ?’ Claire and I play along most of the time, but also point out that the mind plays tricks on us sometimes. There is coherence amongst the gibberish, thank goodness. He asks to play Play Station a lot and is slowly remembering presents he got for his birthday. He knows who we are and misses Joseph too. The hardest thing to bear is when he asks to go home and then starts sobbing when he realizes he can’t. Last night he screamed and told me he was going to die over and over again. It’s really heartbreaking at times in here. In the morning the physiotherapists came and were pleased with his progress. He managed to sit up and we even got him onto the scales to check out his weight. Claire stayed with him in the afternoon while I did a quick round trip home to bring back clothes and other supplies and to wash his soiled blankets and pillows. He had another EEG while I was away. We should know the results tomorrow and be able to see if his brain has deteriorated at all since the fits. Soon after I returned, Claire left for her train. Joseph is at his Auntie’s tonight so hopefully she’ll get some proper sleep. It proved another restless night at this end though with Josh either screaming, weeing, pooing or bleeping 6 or 7 times an hour. His mind must be so confused and busy that he’s finding it nigh on impossible to sleep. Which means I’ve got no chance either…
Friday 16th July
Can’t really say I was up early, as I was never officially in bed long enough for it to count. Dressed by 6am, I sat on the bed and talked nonsense with Josh for the next few hours until the nurses changed shift. Claire arrived late morning by which time Josh had been seen by the physios but had been less keen to participate than yesterday. Managed to get out and eat while Claire held the fort. This time around it’s so much harder to do anything as Josh needs constant care and supervision. I don’t think either of us venture out of the room at all when we’re alone with him other than to stock up on wee bottles and wipes or to raid the linen cupboard. The doctors did the round while I was out, but Claire filled me in. Nothing of any real note to report. Josh’s teacher at GOSH popped her head round to say hello but he hardly stirred. After Claire left to pick up Joseph, Josh’s bowels went into overdrive with me having to change him and the bed 10 times between 2- 9pm. The nurses would probably help at a push, but he’d be left sitting in it for God knows how long before they actually turned up. He’s already developed a terrible rash on his bottom that makes him howl. Every time a nurse does enter the room, he asks politely if he can go home and becomes hysterical when he’s told he can’t. He’s so confused and distressed by what’s happening in his head right now that he lashes out sometimes and has caught me several times with a cracking right hook. In between changing sheets and dodging and punches, we managed to see the Neurology team who confirmed that his latest EEG scan looked better and that the inflammation on the right hand side of his brain appeared to have lessened. There are more tests planned next week. An Optimologist turned up soon after to flash lights in his eyes for half an hour. Her conclusion was inconclusive, but she did say that his eyes appeared to look normal and that she couldn’t detect any flickering in his right. By the time the occupational therapist turned up with a wheelchair for him to try, I had to send her away as there was no way in the world we’d be able to get him into it, given the state he’s in and he deserves a rest to be honest. One of the doctors returned around 8pm to follow up on our request to find him something to help him sleep. The neurologists had suggested a drug which they’d since found out could cause seizures so they needed a rethink. Once we’d discussed this, he updated me on a couple of other matters and came out with some potentially devastating news. After further analysis of his first Lumbar puncture they’d discovered another virus in his brain. This sent alarm bells ringing for me as I was convinced it was one of the two viruses they’d originally told us they wanted to rule out as they’re so difficult to treat, They’d also found a third virus in his urine sample. The doctors don’t appear to be too worried at this stage and still see the chicken pox virus as the greatest danger, although I was sure they’d said before that these viruses were a bigger threat. When pushed, he did go as far as to say that they’d never had any patients with all 3 viruses before, which was far from reassuring but at least an honest answer. After saying they wouldn’t alter his treatment in light of these discoveries, he returned 20 minutes later to say they were reducing his steroids again. I suggested they stop Josh’s feed overnight to rest his bowel and allow him to sleep which was done and appears to have worked as I only had to deal with a couple of wees during the night and Josh virtually slept through. I say virtually, as he woke 3 or 4 times and is still hallucinating. Whatever he’s seeing is making him scared and upset, but I fear that what he senses happening to him is what he finds really terrifying.
Saturday 17th July
Another ‘just got through it by the skin of our teeth’ day. Josh had a really good night’s sleep and remained out for the count until around 4pm. The drug they gave him to sleep would only have helped him drift off, so his body and mind are presumably just catching up on some well deserved lost rest of their own accord. He didn’t miss too much action as I just sat there worrying as I’d Googled his new virus the night before and it had made difficult reading. I never normally Google anything medical and frequently tell Claire off when she does but something was nagging away at me about what they’d said before and I knew I wouldn’t sleep unless I clarified it I spoke to one of the ward doctors about the virus in the morning but she said it wasn’t her field. She did promise to send the Professor of Infectious Diseases along to talk to me later though. Claire arrived around 1pm and had a nap on the bed while I stretched my legs and wandered aimlessly round town. I left it so late eating that I ended up sitting down at the grubbiest café I’ve ever seen and ordering kebab and chips. It wasn’t as bad as it sounds and hit the spot. Back in the room, Claire and I tried to plan out the week but realized we’d just have to play most of it by ear. The Professor turned up and whilst he confirmed that the virus is a tough one to fight off, he remains convinced that Josh doesn’t have it and that it’s more than likely been wrongly identified. He told us it would be highly unusual and extremely unlikely that Josh had it as he was appearing to recover well, whereas the other virus tends to result in a very quick downward spiral once activated. I felt a little more reassured but did point out that Josh has a way of rewriting the medical rule books. We should hear conclusively one way or the other by Wednesday. Just before Claire left, Josh woke up and was pretty responsive. His sheets were wet and we decided to change the bed. While I was holding Josh he suddenly started to have another seizure. His head rocked back, his eyes rolled up into his head and we went limp in my arms. Not knowing what to do, I guessed the best thing was to lie him flat on the bed. Claire switched the oxygen on and pulled the emergency button. The emergency team were by his side within seconds ready to work on him but Josh appeared to recover on his own much to everyone’s relief. Post-seizure patients often go into a deep sleep which makes it hard to tell if they’re stopped convulsing or not - even more so with Josh as he likes his sleep so much. For a few minutes he refused to stir at all until one of the team pinched him hard enough to get an irate grunt in response. Shortly after, he opened his eyes again before going back to sleep and snoring loudly – something that shouldn’t really happen as he had his adenoids out when he was six. With Josh settled, I told Claire to go home which she reluctantly did. Josh woke again a little later and appeared even more coherent. He asked for water, but due to a mix-up there was no cooled, boiled water bottles available on the ward. Instead we had to settle for 2 mini bottles of Cow and Gate sterilized water which Josh normally hates. He drank about 10mls before pulling a face in disgust. It’s staggering he noticed the difference under the circumstances. With no drinking water anywhere on the ward ( I generally have to make my orange squash up with luke warm kitchen tap water) one of the nurses raided their own supplies. Josh nodded his approval and even said ‘Thank you’ when he handed back the empty cup. He was asleep again soon after and will hopefully sleep through again. Worryingly, if he has a seizure in his sleep it’s far harder to spot and I would have to rely entirely on the various machines he’s attached to. I think I’ll be sleeping with at least one eye open tonight to aid my one good ear…
Sunday 18th July
Think of the worst day you’ve ever had at work. Multiply it by a hundred and you’ll start to get some idea of how my day’s been. Multiply it by a thousand and you won’t even come close to knowing how Josh must be feeling tonight as he finally succumbs to some much needed sleep. There had been a relative calm before the storm that hit us. The morning and most of the afternoon had passed without event. We both slept reasonably well given the number of IV infusions, drugs, temperature checks, eye flashes and blood pressure checks Josh had in the night. Claire was looking to swap over with me today but I told her to have another day with Joseph and we’d swap tomorrow. It’s so emotionally and physically draining this time round, making it hard to do long stints, but with Josh being relatively stable again I wasn’t too worried. Not being able to leave the room at all makes it tough – especially at weekends when hardly anyone ventures in – and you end up snacking on whatever’s around. The wasabi extreme Pringles and the M&S mini mini-rolls took a particular bashing today. Josh remained relatively unresponsive. It’s horrible to see him this way. He’s asking for water sometimes and saying isolated words, but never really stringing more than a couple of words together now. I put the radio on for him for a while and he did move his head a little to JLS, but not for long. He’s back on his feed again but even at just10ml an hour he’s still pooing far too much. Changing him and the bed is still proving a mammoth task as it leaks out of the sides and onto the bed whatever I do. Even with a nurse helping it’s no better. We’ve tried making our own hybrid pull-ups from 3 different brands but with little success. At around 3pm one of the nurses had a quiet 30 minutes and offered to sit with him so I could walk over to the park and feel the sun on my skin and the wind on my face. When I came back he needed changing again. In the middle of straining to do another wee shortly afterwards, his eyes suddenly started to go again and he started foaming at the mouth. As he was still breathing I lay him on his side so he didn’t choke and yanked the emergency pull. It neither lit up or sounded an alarm in the room so I sprinted to the bathroom and pulled the one in there, still with no effect. It must’ve made a noise somewhere though, because when I opened the door to yell down the corridor, the team were already on the way. Josh settled down quickly this time, but went into another seizure shortly afterwards – this time for much longer and was much harder to rouse. He’s low on calcium, magnesium and potassium – all of which can contribute to having fits. The plan is to up his anti-seizure drug and give him IV supplements. I tell them to stop the feed again and return to IV fluids as his bottom is red raw with huge open sores now and he’s in so much pain when he passes anything. The barrier sprays and creams we’ve been given don’t really do anything to help this. I call Claire around 7pm to update her. It’s nearly 3 hours after the first of his seizures but it’s the first chance I’ve had to pick up the phone. Josh isn’t responding too well to some of the neurological tests but that could be because he’s in such a deep sleep and reluctant to stir. At least he’s stable again. All that changes a couple of hours and 3-4 poos later. He suddenly screams ‘ help me’ and his heart rate shoots up from 73 bps to 255. He’s spasming in pain as he pushed his legs out towards me and tells me his bum hurts. He’s somehow coherent enough to score it as a 10 out of 10 rating on the pain scale. I call the nurse and tell her to get a doctor as somebody needs to witness what’s happening. She suggests oral morphine and Buscapan for the pain and stomach cramps then disappears for 20 minutes while I’m left to struggle with Josh on my own, worried sick that he’ll slip into another seizure at any moment, It was a shocking experience with no sign of anyone returning to the room, despite me pressing the buzzer repeatedly. In the end, I left him for 5 seconds to step out into the corridor and yell for help. The nurse Josh had two nights previously ambles in and watches him thrashing around in my arms as his heart rate shoots through the roof again. ‘ Is he in pain ?’ she asks. My reply wasn’t terribly polite and became even less polite when she asked if perhaps he was constipated. Gordon Ramsey would have blushed at my response although I feel it was merited given that Josh had passed diarrhea around 10 times during her last shift with him. Once Josh had calmed down and nodded off, I cleaned him up and took myself off to bed, completely shattered. Lord knows how tired Josh must be feeling…
Monday 19th July
They actually managed to get hold of a doctor to take a look at Josh eventually. Unfortunately it wasn’t until 3 hours after his attack, so there wasn’t really much point. My bed is next to Josh’s and she was bending down to examine him when I heard her call out his name and opened my eyes to find her bottom about 2 inches from my face. There are better sights to wake up to, believe me. She said she’d put down what I’d told her in her report, but she seemed dubious that his heart rate had hit 267 several times, which is weird as it’s all recorded on the machine so proof is only a click of a button away. I fall back into a deep sleep and am vaguely aware of two nurses changing Josh at around 4am but feel too heavy to move. Claire is down straight after school to discuss things with the doctors. Josh hardly moves all day and is reluctant to open his eyes – he has definitely gone down hill overnight. There is a plan and a back-up plan, just in case the first one doesn’t work. As a result of the new virus they believe he’s developed, he will be started on a new, once a week IV drug later today. Other matters are discussed that lead me to lose my cool ( not that I ever had any…) once or twice, but now is neither the time or place to discuss them. He has another EEG brain scan in the room but sleeps through it. We’re told there is nothing new to see which is good news. Claire has a kip on the bed while I have a walk round the Brunswick centre and read the paper in the park. Some of the questions we had about the new virus are answered in the afternoon but many aren’t. The doctor believes Josh had another mini-stroke while he was talking to us, but I think he’s wrong and Josh was just responding to pain. I’d waited for the MRI scan. which was scheduled for 4pm, but at 4.30pm I’m told they can’t do it.The lead consultant can’t see us today either so we will just have to wait. Josh was a little brighter in the afternoon – correctly identifying which new football cards he has or hasn’t got and nodding when answering simple questions, so a definite improvement. One of the new student nurses looks vaguely familiar and keeps smiling at me which is very flattering, but somewhat puzzling. I avoided her last week for fear of coming out with some cheesy chat-up line like ‘ Don’t I know you from somewhere ?’ but today she’s looking after Josh so I can’t hide. Fortunately she comes out with the line instead. She remembers me and Claire, but not Josh, from a 1st year placement on a different ward 2 years ago. It’s only when I show her a photo of how Josh used to look that she can recall him – that’s how different he looks now. She’s now in her third year. Where does the time go ? Josh’s new drug requires a pre-drug down his peg and when they arrive I almost offer to do them myself like I usually do. Thank goodness I didn’t as the first one hasn’t been mixed properly and blocks his line. No amount of syringing with warm water or poking with wires seems to shift it. Coca Cola is tried as that usually works, then a special Clog Buster solution, but to no avail. My suggestion of calling in Dynarod falls on deaf ears so we are left with a real dilemma. Basically he will need to go under anesthetic at some point soon and have another tube inserted through his stomach wall. In the short term, he will have to have an NG tube stuffed down his nose into his stomach to deliver the rest of his medications. Normally Josh would freak at this, even though he’s had it done many times in the past, but today he offers little resistance as the nurse shoves it in and slides it home. I leave Claire and Josh just in time to make the 7pm from Victoria- only it’s cancelled. Return home around 8.15pm to welcome Joseph who gives me a huge hug. After a long story he kisses me in bed about a hundred times and says how much he misses me and Josh. It’s pretty hard for him too and there’s no real let up in sight. We will be at GOSH until at least September I would guess. Claire calls me before bedtime to say that she and a nurse spent an hour giving Josh a thorough bed bath only to have him unleash the biggest flood of diarrhea she’s ever seen followed by a wee that shot so high it skimmed the ceiling before splattering down all over him, the nurse, Claire and his bed. Talk about a Kodak moment…
Tuesday 20th July
Today is my Dad’s birthday – he’s somehow reached the grand old age of 91, although you’d never know it to look at him or to talk with him. Like my sister, who lives near to him and mum and does a fantastic job of looking after them, he is a real rock and always there to offer a reassuring ear or medical advice – given that he was a GP for many, many years in Liverpool. Happy Birthday Dad ! I was planning on going back to GOSH today to help Claire through the MRI with Josh, but Joseph is really upset at the thought of missing his last swimming lesson, so I spend the day at home once I’ve been for a hearing test and nipped down to the gym. It’s always fun waiting to be called in for a hearing test as everyone in the waiting room has a hearing problem and never hears their name being called. Luckily the only other person there today is a woman so when I hear the word ‘Mr’ being called out I know it must be me.Today was meant to be the hottest day of the year, which it clearly isn’t, but it’s pleasant enough to sit in the garden once I’ve hung out the washing and bash out a few entries for the blog. While things are thankfully quiet at the hospital, here’s a quick update on what happened between the last entry and Josh being admitted to hospital again.
Joseph’s birthday party at the end of May went without a hitch and Mr Bonkers more than lived up to his name, keeping 34 children captivated for nearly 2 hours. A big thank you to everyone for all his lovely presents. Josh and I ventured out to see Prince of Persia at Bluewater which he was desperate to see but we both found very disappointing. Claire and I enjoyed a rare date night at the O2 rocking to The Black Eyed Peas in concert who were excellent. Cheryl Cole was supporting them and showed no signs of Malaria other than looking hot and sweaty, which was fine by me. The saga of our rotting garden and the court case between the landscape gardeners, log company and treatment people failed to reach any conclusion in court, but thanks to a cheque for half the amount from the latter we were finally able to have the area demolished and rebuilt so Josh can actually sit outside when he’s home. In truth, it’s far more practical now than it ever was. Claire returned from a hen weekend of non-stop dancing and drinking intact the evening before her birthday to find her present, a double rocker garden seat, fully-assembled by Joseph and myself and sitting invitingly in the sun on our new deck. Joseph’s school gave reception a day off and we took the boys out for the day to a relatively empty Chessington. It was wonderful to be out as a family again, but after a couple of rides on the runaway train and shooting a few snakes in Tomb Blaster, Josh was too tired to venture on anything else. Thank God they had the zoo and Sea-Life to occupy him. Josh’s lovely young South African teacher left for visa reasons which was sad, but she was replaced the next week with an equally nice, but much older Malteaser. Claire finally managed to get Joshua’s home schooling hours doubled to 10 hours a week but it coincided with his health deteriorating, so he’s actually been far worse off than he was before ! Even the World Cup wasn’t enough to perk him up. He watched most of the early games, but by the time the group stages were over he struggled to stay awake for either the afternoon or evening games. Josh was far less concerned about England’s early exit than he was about a spoof BBC Newsflash warning of a devastating new virus sweeping the country. ‘England Fever’ may have seemed like a clever use of license payer’s money to some bright spark at the BBC, but to an 11 year old boy with little or no immune system it really wasn’t funny. On the gym front, I’ve managed to crawl out of bed most mornings at 6.30 am. Although I’m not exactly overdoing it once I’m there( not at my age ), I’ve certainly toned up and am a good deal fitter. A word of warning though - never read a paperback in a sauna as it melts the glue on the spine and all the pages drop out. Freelance work has continued to dribble in without me having to actually look yet, but I’m having to turn down more and more jobs because of Josh’s health to avoid letting anyone down. That’s been about it to be honest. The heat wave had made life seem a little brighter, overall, and whilst Josh had been struggling over the last month or so we’d been in pretty good spirits up until all this kicked off and would give anything to have him back just as he was then.
And so back to the present, and after picking up Joseph and watching him belly flop, somewhat painfully, through his last swimming lesson we nip into McDonalds on the way home and share a Mars Milk Shake with his Happy Meal. Claire calls me with an update before bed. Josh is in better spirits today and a little more mobile. He did speak to say ‘ Actually…’ but then forgot what he wanted to say, bless him. He has been drinking water again and the team are pleased with his progress as much as they can be. They haven’t had a post-transplant patient face so many viruses before, especially such rare ones, so they are having to feel their way a little. The MRI didn’t appear to show any signs of the new virus causing any damage to his brain and if we can build up his immune system, we should be able to get rid of it for good. Easier said than done, Whilst his steroids have been reduced, the GCSF which can boost his system is traditionally slow in having an effect on him. The team are planning to contact his donor for a bone marrow top up or even pure stem cells in a bid to get his system up to speed. The chicken pox virus has disappeared from his blood but is still present in his cerebral fluid. They have found evidence of an extremely rare fungus in his brain, but this as this would be the first ever reported case of it, should it be true, they are skeptical and think the sample must have been contaminated somehow, We will no for sure later in the week, The skin biopsy proved nothing one way or another, although they remain convinced it is GVHD and it is slowly starting to come back on his legs this time. His bottom remains sore but he now has protective patches , almost like a second skin, over the worst bits to protect him from the pain. For now, we can only wait and see how the rest of our story will unfold, which is tough because it makes you feel so helpless. Our thanks go out to our family and friends who are supporting Josh, Claire, Joseph and I with their deeds, thoughts and prayers. There’s no disguising the fact that Josh is fighting for his life - but boy is he fighting hard and we reckon the smart money is on him pulling through. Seconds out – Round 2. Those viruses ain’t gonna know what hit ‘em !
