Monday 26th - Wednesday 28th September
I didn’t get to sleep until 3pm in the end as there’s so much to think it proved impossible to switch off. Once Joseph’s at school I patch up the skirting in the dining room with filler, then sand and paint it as I noticed it was split when I moved things around last night. Josh’s bed will hopefully be delivered on Wednesday and will fit in there nicely, but whether he’s home this week to sleep in it remains to be seen. He had a rough time last night and is suffering from almost constant, blinding headaches. A double dose of morphine didn’t help and by 2am he was begging Claire for midazolam. It did the trick and he dozed for a while, but the headaches never went away for long and he was soon up and in pain again. He’s also started vomiting regularly – 4 times in the last 24 hours so far and big ones of around 400ml too, which is most of his feed. If he continues to vomit, many of his drugs will have to be switched back to IV and we’re unlikely to be discharged as we can’t administer them at home. The bigger worry is if he has to go back on TPN again which means we won’t be out until November at the earliest. I can hear Josh crying out in pain when Claire calls to update me again in the evening. He’s worse if anything and won’t let her near enough to apply the steroid creams for his skin. The first theory from the doctor on duty is that his EBV has escalated into something else. Hepatitis is talked about in addition to glandular fever, but a second doctor dismisses both of these and feels it’s the JC virus doing nasty things again – in spite of the Italian treatment. Both Claire and I suspect this is the most likely answer too. His EBV level initially shot up to 75,000 which is very, very high. Normally they’d treat it at 40,000, so quite why they didn’t tell us what was happening or treat him is a mystery. If I was being kind, I’d say they wanted to wait and see what happens as the treatment itself puts him at more risk from other diseases and viruses. As it turns out the level dropped to 14,000 today, so they won’t give him the Rituximab. Josh’s daily blood test results have also shown his GGT (Gamma-Glutamyl Transferase) level has gone through the roof. The upper limit is normally between 40 to 78. Josh’s has shot up to 1000. This can be a sign of anything from bile duct obstructions and liver disease to heart failure. We just have to hope it’s nothing too serious. Claire asked for the results of his bile duct ultrasound from a couple of week’s back and it appears nobody’s chased them up or knows what they were. When they do track them down, we’re told his duct is still dilated. We don’t know what that means as he’s been taken off the gastro ward round and nobody has followed it up. Very little ever gets followed up here. Back at home I fall asleep next to Joseph at 8.30pm while rubbing his tummy, which is giving him a lot of pain. I wake up at 2am for just long enough to undress and turn the lights off downstairs – although, luckily for the neighbours, not in that order.
Tuesday brings little respite. Josh had a worse night if anything. Neurologically something’s definitely going on as Josh has gone from ‘feeling spongey’ to hardly being able to move. Initially he’d been able to climb out of bed by himself to go to the toilet, but at 4am he told Claire to call a nurse as he’d need two people to get him up. The nurse was worse than useless and kept grabbing him awkwardly and hurting him. When Josh suddenly vomited again, Claire had to instruct him on what to do to help and even then he left her to clear up most of the mess. Josh’s speech is slurred again and almost impossible to interpret. His headaches haven’t let up at all and the moment he wakes he’s in pain and wants to go back to sleep. He doesn’t want to do anything and just keeps yelling at the doctors and nurses buzzing around him, telling them to leave him alone. Ward round doesn’t reveal anything new but a neurologist has been up a couple of times. She seems to think that something changed on his latest MRI scan. We were originally told there were no significant changes, but who’s to say what’s significant and what isn’t if they don’t know what’s wrong with him in the first place ? It’s highly unlikely he’ll be coming home this week now and we’ll have to gear ourselves up for at least another week at GOSH. Claire’s spent much of her time sitting in the dark with the curtains drawn as Josh has retreated into himself once again. She spoke to one of the nurses yesterday who’s just returned from her annual trip to her homeland of Italy. She confessed that when she went last year, she didn’t expect to see Josh again as it was highly unlikely he’d ever pull through after his coma. It’s the first time anyone’s actually said what we were all thinking at the time and at least validates how serious it all was. Sometimes the doctors are so reassuring you doubt your own sanity. The last day or so has felt like the darkness has descended again and Claire’s fearing the worst. It’s hard not to as Josh is so vulnerable. He had an EEG in the morning and complained of pain on the right side of his head when the electrodes were attached. The results showed that side of his brain is slower than the left. The right side of the brain controls your movement on your left side and he’s clearly compromised. His left hand is completely useless and just flopping around. He has to use his right to manoeuvre his left thumb into his mouth for comfort. I explain to Joseph that Josh won’t be coming home on Friday as we cycle back through the countryside after school. He stops pedalling and breaks down and cries. I feel like joining him. He’s fine by the time we’re home and we enjoy the sunshine and play football in the garden before Taekwondo. He comes downstairs in tears an hour after I put him to bed complaining of a headache. I give him Neurofen and he cuddles up to me on the sofa. He’s asleep within 10 minutes and doesn’t even stir when I carry him back upstairs a couple of hours later when I’ve finished working.
It’s Wednesday and Joseph’s off like a rocket on his bike up the hill to school. Now I’m no longer nipping to the gym twice a week it’s a real struggle to keep up with him. Back at home basking in the promised sunshine, I catch up with Claire. Things have got worse at GOSH and she’s really worried about Josh. Over the years we’ve learnt what to worry about and what not to worry about. Tests, procedures, treatments and viruses that would send most people into hysteria hardly cause a frown these days, so when Claire says she’s worried it’s very worrying indeed. Josh is very disorientated and confused and still in pain despite the morphine. Even when he’s asleep he whimpers with pain. His left arm is much limper than yesterday and he can’t even use his right to push himself up off the commode anymore. It wasn’t a good night and he’s still vomiting, prompting Claire to ask that his oral Aciclovir is switched back to IV immediately as we have to protect his remaining eye at all costs. He feels cold and clammy and is acting like he has a fever, even though his temperature’s fine. His oxygen levels, heart rate and electrolytes are good too which should be reassuring, but isn’t as nobody has a clue what’s wrong. Josh feels something different is going on too and when he can speak ( albeit in slow, slurred, almost incoherent sentences ) he asks Claire to help him as he ‘feels really, really ill’. Claire’s been in tears, but is somehow holding it all together. She keeps updating me throughout the day, but the news doesn’t get any better. When the ophthalmologist comes up to check his eyes, she has to force them open. He has several new haemorrhages in his good eye and she spots a blurring of the optic nerve, which suggests pressure in the brain. It’s pretty serious and neurology are called up again. The neurologist is pushing for an emergency MRI scan but has no luck in securing one. Hopefully it will happen tomorrow. Claire calls me again after I’ve picked Joseph up from school to tell me Josh is having a CT scan which should reveal any swelling in his brain and tell us where the pressure is. There’s also talk of giving him a high dose of steroids over the next 48 hours to settle the inflammation. Just before Joseph goes to bed, she calls again. The scan was a bit of a nightmare with Josh seemingly in a deep sleep and drugged up with morphine until they put him on the scanner, at which point he suddenly woke up. Unable to talk properly or stand, he tried to get up and leave and attacked Claire when she tried to stop him. He wouldn’t let anyone else near him and it took some time to settle him down with midazolam. Unfortunately or fortunately, it’s hard to say, the scan revealed nothing. No haemorrhaging or bleeding which I guess is a relief. Everyone’s expecting the MRI to give us an answer, but there’s no guarantee given that none of the previous ones have helped. There’s been a decision made not to start the steroids as nothing was revealed and we don’t know what we’re dealing with yet, it’s all supposition. Is if that wasn’t enough for one day, my sister-in-law calls 30 minutes later. She was up at the hospital today to give Josh his pre-homecoming haircut in theory, but unable to do that she’d stayed to keep Claire company and help console her. She tells me Josh has taken a turn for the worse and Claire’s with him in the room, along with a lot of other people. It feels just like the call I made to Claire in Portugal just before Alex died and I need to have a contingency plan in place. I call Claire’s sister and put things in motion. I pack a suitcase for Joseph and make sure I’ve got everything I need for an extended stay up at GOSH, but Claire call back shortly after to say he’s okay. He went blue and had breathing difficulties that nobody seems to be able to explain. It’s possible the cocktail of morphine and midazolam relaxed him so much it brought it on. He’s been over sedated before and ended up in PICU on a ventilator. He has several black marks all over his body which are hopefully just bruises due to the manhandling he’s had to put up with over the last day or so, when he’s needed help to get out of bed and onto the commode. At the time of writing Josh is settled again and his breathing’s okay. I’m not on red alert, but that could change at any minute...
These are desperate times. To have been so close to coming home and then have it snatched away is one thing, but the fact that Josh is so ill again is hard to take. It’s been 15 months since Josh was admitted and we’re no wiser about any of the issues he’s faced since he’s been in there. And now here we are back at square one again, with him in real danger of slipping into a coma again. We still have faith in the medical staff and believe there’s no better place for him to be, but it’s a terrible situation and it’s hard to ever see an end to it.
I’m posting this week’s entry early so everyone’s up-to-date and we don’t get anyone sending welcome home cards on Friday or texting us thinking everything’s okay. It’s far from okay and I fear it may be some time before Josh is home. To be honest, it’s more a matter of whether he’s going to recover or not. So if you’ve still got any prayers left for Josh, please start saying them now...
