Monday 9th August
Spent the morning gardening. It’s looking good out there despite the lack of rain and the scorched lawn. Shame we don’t get to enjoy it as a family. The whole point of the legal battle to have the rotting logs carted off and the area decked was to allow Josh to sit out there in safety. I think he only ventured out twice once it was done, although he spent the day before he went into hospital out there and was in great form, cracking jokes and playing games. How long ago that feels, even though it’s only just over a month. Joseph’s watching Deadly 60 while I’m in the garden and keeps rushing out to tell me more obscure facts about the world’s most dangerous animals. The vampire bat has the sharpest teeth in the world, a tiny frog is the world’s most poisonous creature and the word Boa means strangle. Who needs Wikipedia with Joseph around ! When I’m not listening to his words of wisdom, I’m staring at big butts on the internet. No seriously, it was Claire’s idea. A large water butt attached to the downpipe by the side of the house is probably the cheapest and easiest way to stop our porch flooding. Thank goodness I Googled it at home and not at the hospital as they’d probably have kicked me off the ward. After visits to the local library, municipal dump and a couple of hours of gym and swimming, we go to Bromley for lunch and zip round the shops afterwards. I get a call about a freelance job which fits perfectly around my time up at GOSH this week, right down to the briefing tomorrow afternoon after our debrief from the doctors. All the different departments are sitting down tomorrow to discuss where we go next with Josh following today’s MRI. Claire wasn’t allowed to go down with him this time, presumably because there’s no value given his low level of awareness. The results will be looked at in more detail tomorrow, but the headline news is that there appears to have been no change in how Josh’s brain is looking, which is somewhat puzzling given the deterioration since his last scan. Whilst it’s not healthy that Josh remains such a medical enigma, no change would appear be a good thing. On the minus side, his poo today was green which could be a sign of yet another infection. The doctors were looking into the possibility of stopping the ventilator today and letting him breathe for himself again, which seems unlikely if it was his encephalitis. Let’s hope they try it as the longer he’s on the ventilator the higher the risk of infection. The last Claire told me, Josh was struggling without it and they would reintroduce it overnight. Sedation has been lightened and he will slowly start to come round, in theory. What we do next may well depend on how he reacts to finding he has a huge tube down his throat.
Tuesday 10th August
After a spot of early morning ironing, I drop Joseph off at a friend’s house. They’re taking him to the seaside, despite the somewhat stormy start to the day. Just to be on the safe side I cram Factor 30 suncream, wellies and an anorak into his Batman rucksack along with his Power Rangers wallet. At GOSH, Josh is still off the ventilator and holding his own. The biggest surprise is that he now has a neighbour, even though we were categorically told they wouldn’t put anyone next to Josh as it would compromise his health. Not only that but they’re sharing a nurse which puts him at even more risk. We totally understand why they need the bed, but surely you can’t just change the rules at the drop of a hat like that ? The BMT team are down almost as soon as I arrive and the general consensus now is that his compromised airway was due to the over sedation rather than the encephalitis. If they’re right, it’s good news. Josh is moaning consistently but it’s hard to know whether it’s pain or just discomfort. If they can get the level of sedation right, he could be back up on the ward tomorrow morning which would be fantastic. It does leave me with a slight dilemma, however, as I only accepted the job yesterday because I’d thought Josh would be in PICU for at least another couple of days. Claire and I manage to share a panini at Starbucks before I’m off to the briefing. After two hours of listening and trying to sound intelligent I scurry back to the hospital to get started. My master plan is to get two days work finished before dawn, so I’m not preoccupied when Josh returns. Given how well he’s looked after down in PICU I have no qualms about coming back up to Fox ward to start writing once Claire’s headed off home. I nip down a few times during the evening to check on him and he seems to be settling down nicely. I’ve broken the back of what I have to do by 3am and decide to finish it off in the morning, given that I’m generally awake before 6am.
Wednesday 11th August
Woke at 5.30am. How predictable. Straight down to see Joshie and say good morning then back up here for an hour or so of work. By the time I’m back on PICU it’s ward round and I can hardly see Josh’s bed for doctors. Back upstairs I’m waiting for news of Josh’s impending return when his bed suddenly appears at the door with him in it. He’s on a minimum amount of oxygen through a nasal prong, which he must be blissfully unaware of otherwise he’d have pulled it out. The PICU nurse that hands Josh over must’ve only been with him for an hour or two today, but gives the most comprehensive update you could ever ask for to the BMT nurse. Steroids will be reduced again on Friday, all being well. Having Josh back up here on the ward is, of course, terrific news because it means he’s in less immediate danger. It’s hard to get too excited though as the real Joshie remains elusive – lost in a never never land of sedation, pain and brain inflammation. His score on the coma scale has improved significantly in the last 24 hours, but had slipped so low on Friday that all it’s done in reality is stay the same. The football season starts on Saturday and I’m left wondering how many fixtures will pass before he’s truly conscious again. It may seem like a strange way of measuring time, but games played and the league table will probably be Josh’s only real way of measuring how long he’s been out of it as days merge into weeks. We’ve been here 5 weeks already. ThankfullyJosh’s pain appears under control at the moment. He’s on a relatively light morphine background and doesn’t appear to need any bolus pushes as the day passes. A nurse sits in with him while I canter down the road to a meeting and present my work which goes down extremely well with all concerned and is now finished two days early. Luckily I charged by the hour rather than the day this time. Result. Straight back to Josh who is still looking settled. Someone came to visit us during the hour I was out but was turned away. I don’t know who so apologies are due to whoever it was, unless it was an overly enthusiastic inland revenue employee after my national insurance payments. It’s not that I’m avoiding paying, but for the second year in a row they’ve proved completely incapable of collecting a direct debit. Let’s hope that if there is a Government cull in that department, the club falls on the right heads. The afternoon is relatively peaceful. I’m actually starving as I didn’t have time to buy anything on the way back from my meeting, The team there were very charitable and packed me off with a kit-kat, a banana and a can of Orangina but that’s all I’ve had all day as it’s impossible to get out and we cancelled Josh’s meals last week. I manage to get my hands on a menu for Thursday and fill it in for Claire. As evening approaches, Josh becomes more agitated and claws at his wires. He’d already had a cut on his nose from a few days ago and reopens the wound. His stomach pain is beginning to creep back and before long he’s crying out in pain again for long periods. The England game’s on TV as I try to comfort him and i’m so busy doing that I completely forget to boo the players. Fortunately there are 70,000 or so people at Wembley doing it for me. I keep hoping Josh will suddenly open his eyes and boo Ashley Cole but it doesn’t happen. What does happen is his pain gets worse and he’s writhing around again just as the CSP pops his head round to see how he’s coping now he’s out of PICU. He recommends we increase the background morphine but wants the anesthetist to review him first. Josh settles down before he arrives and I crawl into bed hoping we’ll sleep through but very much doubting it...
Thursday 12th August
And so it proved. Josh was crying out again about an hour later and I woke to find an anesthetist in the room. He felt it unwise to up the background morphine as there’s still a concern his airway problem last week was sedative related. He recommends no change and to reduce his pulses so they only happen when he’s in the middle of an attack. If we call him up, he can override the machine and increase the size of the pulses if necessary. Josh has settled by the time he leaves and I climb back into bed expecting to be up again within the hour. Three hours pass before the pain kicks in again at 3am and he’s calm by 4am. I don’t hear a peep out of him again until 7.30am which counts as a lie-in for both of us. We had to change the bed a couple of times in the night but as he’s still on the catheter it was for number 2’s and not number 1’s. I’ve asked when the catheter’s coming out as, convenient that it is, it’s just one more attachment to his body that could cause infection. They’ll review it today – presumably depending on whether he has a negative or positive fluid balance. The physiotherapists arrive just after Josh settles down after a particularly tough attack and want to change his oxygen mask and his position in bed. They’re absolutely right to do this, but my natural instinct is to let him be. I let them get on with it and they fluff up his pillows and haul him onto his side. Josh is like a timebomb that could go off at any moment. He starts to look agitated for a few minutes but settles down. The morphine we gave him the second they walked through the door seems to be kicking in. They ask me If I’m comfortable with what they’ve done and the best way I can put it is that it’s ‘ like decorating your house the day before a student party’. Timing is everything and if he wakes because he’s been moved, he’ll trash all their hard work in 30 seconds and be writhing around in pain again for the next hour. I’m not sure they appreciate the analogy so I make a point of reiterating how important it is that they come in every day and try to achieve best practice and we all part on friendly terms. As it turns out, Josh is fine for the next hour and doesn’t stir. Claire arrives early afternoon and handover lasts an hour as there’s a fair bit to catch up on then I’m off home. Having not eaten much in the last 24 hours I pop into M&S at Charing Cross and buy far more food than I then for the next few days just because I like the sound of it or the pictures on the box. Anything that doesn’t require cooking has been devoured before the train passes Hither Green. I’ve just about got enough left for dinner tonight. Joseph doesn’t need collecting until 6pm so there’s time for a trip to the gym. I’m not quite sure when to leave to pick him up though as there’s a big difference between the time on the clock in the women’s gym and the one in the main gym. As it turns out, Bromley ladies are officially 20 minutes behind the rest of the UK. Let’s hope they sort that out before the schools go back...
Friday 13th August
Didn’t realise it was Friday the 13th until I wrote it down just now. I’m not superstitious but after the events of last Friday I’ll be happy when the day’s over. Three electricians descend on the house relatively early to put a power point in the garden and wire up 5 spotlights to highlight the black bamboos. They seem to know what they’re doing and are gone before Joseph even gets a chance to raid their toolbox. He has to make do with an hour of swimming instead and once again we end up with the children’s pool all to ourselves. On our way out of the house, Joseph accidentally set off the panic alarm so we had the security company phoning us for a password. If they get no answer they call the police. Luckily I knew what it was, although that hasn’t always been the case and I was nearly arrested once because Claire forgot to tell me. Joseph is fascinated by burglars and how the alarm works and asks what happens if someone breaks in at night when the police are asleep. I try and explain about night shifts and how some of Josh’s nurses sleep all day and then work at night. ‘They’re like bats,’ he says before going on to explain the sleeping habits of some particularly obscure Mexican bat. Maybe it’s time I stopped recording quite so many wildlife documentaries for him. After swimming, we have to pick up the water butt from Tesco in Orpington. It was a tight squeeze but I can tell you that Claire’s big butt only just fits in a hatchback. You heard it here first. Speaking of Claire, she calls me late afternoon to say that Josh’s oxygen saturation is suffering and a CT scan of his chest showed up a couple of shadows on his lungs that could be a fungal infection. The doctors say it’s ‘highly unlikely’ but look that phrase up in a dictionary and there’s a great big picture of Josh next to it, so we’re immediately concerned. Once Joseph’s asleep we catch up properly and Claire tells me Josh has pneumonia again. He’s immediately gone back on several IV drugs to treat it and everyone’s relatively upbeat about it as he seems to be comfortable at the moment, although his nostrils are flaring which suggests he’s having to work harder. Please God, let them both have a settled night.
