Thursday 29th July
Joseph went off to see Toy Story 3 this morning with one of our friends and her daughter. I dropped him off at 9am and was at GOSH by noon to be told they’re premiering the same movie across the hospital on every single TV. Not on our ward, however, as our brand spanking new entertainment systems sadly can’t accommodate it. Shame the play therapist didn’t know this when she excitedly ran round the ward telling people to tune into Channel 20 at 3.!5pm. I wonder how many children enjoyed the repeat of ‘Seaside Rescue’ on the Dave ja Vu channel which was showing instead. On the plus side, our entertainment system now has full internet touch screen access which certainly helps pass the time. Josh has been taken off his continuous IV morphine as there’s a worry it’s making him far less responsive. Pancreatitis is extremely painful, but overall he’s handling it well and doesn’t need too many morphine pushes. He sleeps for most of the day and his blood pressure, oxygen saturation, pulse and respiratory rates remain stable. The only problem is his itching. In the scheme of things it sounds like a relatively minor complaint, but it becomes a huge issue as day turns to night. It flares up around 7pm, and even after his Piriton 2 hours later, it remains relentless all night long. He’s crying out in frustration as he scratches away at every inch of skin. His next IV Piriton dose is 6 hours away and there is nothing else we can give him before that. I try rubbing 3 different creams and moisturizers into his body to no avail. I hold his arms down and kiss his forehead softly while the nurse pins down his legs. He almost gives up on the scratching and falls asleep but it suddenly comes back with a vengeance. He scratches off all his electrodes so we can only monitor his oxygen level, he pulls a needle with an infusion attached to it out of his arm and makes a grab for his NG tube which I just manage to stop before he completely pulls it out. We manage to tape it down to the Duoderm patch we brought up from home because they don’t have any here for some reason, even though they were ordered over a week ago. It’s horrible, horrible, horrible to see him suffering so much and not be able to do anything about it. What makes things even worse is that he can’t seem to communicate at all. He doesn’t nod when I ask him if he wants water or even seem to know it’s me in the room with him. I guess it’s hardly surprising given how preoccupied he is with all that itching. By 3am we’re both totally exhausted and after his next dose of Piriton there’s nothing I can do other than let him scratch himself to sleep while I stand over him to ensure he doesn’t pull any more wires out. By 4am he’s finally succumbed and I climb into bed. By 5am he’s awake and itching and crying out again.
Friday 30th July
Daylight doesn’t bring any relief. He’s still scratching at noon and we’re all out of ideas to stop it. The doctors have been charged with coming up with a plan since midnight, but there’s still no sign of any respite. There’s an oral drug they can give but they’re still trying to by-pass his stomach. I feel tired, wretched, helpless, hopeless and sick to the pit of my stomach - Lord knows how Josh feels. The only positive is that his pancreas doesn’t appear to be bothering him too much at this point and he has remained more stable than he has for days in every other respect. It’s gone midday before the doctor’s round. There are more than ever today and Paul Veys is amongst them. Like me, they feel he’s holding steady except for his itching which they feel is a reaction to a drug rather than a re-ignition of his GVHD as the rash looks pretty dormant. Which one though ? That’s the million dollar question as he’s recently gone onto a handful of new drugs and it could even be a new reaction to one of the old ones. If it’s any, my money’s on Vancomycin as he’s had an allergic reaction to it before and maybe he’s built up an immunity to the Piriton that protects him from it. They agree and it’s the first to take off the list but it’ll be 24 hours before we know if it’s made a difference. In the meantime, they prescribe the oral drug to give him some relief. It’s a couple of hours arriving and after two more it doesn’t appear to have made any difference whatsoever. He’s now been screaming and itching for nearly 24 hours. The rash on his body is now quite visible again and I’m beginning to think it must be GVHD. One of the doctors confirms this on seeing it and a plan is quickly hatched. He’ll go on IV steroids for the weekend to settle the rash and ciclosporin will hopefully keep it in check after that and allow us to drop the steroids dose. At least they can see and appreciate the distress Josh is in and are quick to react. His bloods at the moment are good, hopefully good enough to stop the second virus attacking his brain. The chicken pox virus ( VZV ) is still causing his encephalitis ( acute inflammation of the brain) which is the key reason behind his neurological problems, such as being unable to speak or control his movements properly. At the moment he seems more distant than ever and watching him suffer is becoming more and more frustrating. He’s started trying to pull his wires out again, so I have to pull his hands away every second of every minute of every hour. It’s the same with his oxygen mask and when I give him water, in the form of sponge lollipops, he doesn’t seem to understand that he has to release them and nearly swallows the sponge bit. I had to reach down his throat to retrieve it. For the first time ( ok, maybe second) ever in hospital, I’m starting to lose it, big time. In any given day Josh has 45 possible drugs on his a la carte menu, many of which are given 2-3 times a day. Imagine the vast majority of these running through machines that bleep repeatedly when they finish for anything up to an hour before they’re attended to and you’ll know why it’s easy to be tipped over the edge in here. It’s the bells ! No wonder Quasimodo was driven to madness in the Notre Dame belfry. Add this to the trauma of seeing Josh in so much distress, and having had no sleep whatsoever in the last 40 hours or so and you’ll understand why I’m so close to melt down. Almost as a spot of light relief, one of the senior nurses we know and love from the gastro ward pops up to unclog Josh’s stomach peg. It’s been blocked for a week now and nobody’s even looked at it since it happened. She manages to free it up first time and becomes an instant legend. I do a quick ‘we’re not worthy’ bow as she leaves. By 7pm Josh is finally asleep and not scratching. Please God, let him have a restful night for my sanity as well as his.
Saturday 31st July
Josh’s contented slumber lasted all of 40 minutes last night before his itching returned, this time coupled with stomach pains - presumably a sign of his pancreatitis. Several large bouts of diarrhea, a steroid infusion, a blood transfusion and an IV dose of Paracetamol later, and he drifted off again. There were only 2-3 minor incidents after midnight and the nurse handled all of those extremely well, which meant I enjoyed a lie-in until after 7am. What a difference sleep makes ! Today is the 6th anniversary of our second son’s death. Alex would have been approaching his 9th birthday had he still been with us. This year he’s in our thoughts more than ever, if that’s possible, because of the situation with Josh. Not for the first time, Claire and I have no choice but to grieve separately. She’s visiting the crematorium this morning with Joseph and her parents before heading over here in the afternoon. It’s such a shame that circumstances mean we have to go through so much alone right now as we’ve always drawn great strength from each other. Josh had a pain blip late morning for about an hour, but is otherwise stable. He managed without his oxygen mask for most of last night and is still coping with it wafting on his pillow. He sleeps most of the morning but when he does open his eyes, he doesn’t appear to be any more aware of who I am or what is going on than yesterday, When Claire arrives she’s shocked by his itching which is mild compared to the previous day. By the time we’ve caught up on recent events he’s in terrible pain again and trying to pull out his lines in frustration. A pain management nurse gives him an oral dose of morphine down his NG tube but it appears to run straight out of his stomach peg which has been left unclamped to drain. I did try and point this out but to no avail. To get his IV morphine up and running again we need a doctor to see him. We get a new one who’s never met Josh before who can see how distressed he is and signs off on the painkiller. He has an interesting slant on Joshua’s case and explains how the BMT team have no real idea of what to expect of patients with Josh’s medical history because they have done so few. In hindsight they should have expected him to be more vulnerable post-transplant given he had 2 years of immuno-suppression before he even came onto the ward. It’s a good point and goes some way to explaining why he’s battling so many rare viruses. It’s no consolation though and doesn’t fill us with confidence. He’s also concerned when we tell him about the decline in Josh that we’ve noticed over the last few days and agrees his encephalitis appears to be getting worse rather than better. We won’t really be able to judge this until he’s pain and itch free. By the time the pain management team arrive to help Josh, it’s been 2 hours since his pain started and he’s pulled out his nasal tube. We don’t bother replacing it as his stomach peg has been fixed. Hopefully this will come as some relief to Josh who has a bloody nose from attacking the tube up his nostril. With everything going on, I don’t leave until well past 4pm and pick Joseph up from Claire’s parents just before 6. He’s had a great time and has even had his dinner there, which means more time to play before bed. Every second spent with either Josh or Joseph feels more precious than ever today for obvious reasons. Alex is forever in our thoughts. Let’s just hope he’s watching over Josh for us…
Sunday 1st August
I always think I’ll sleep like a log at home, but it rarely happens. It could be down to being overtired or being too worried. Maybe it’s lack of background noise and I just need to leave a hairdryer or a vacuum cleaner on in the bedroom, like Rooney does. Joseph is up far too early and raring to go, although quite where is open to debate. I’d planned a day out at Eagle Heights or The Hop Farm, but the weather’s not great and Joseph wants to play at home instead. We play footie in the garden before lunch, then it’s off to Alex’s garden. The two fir trees we planted there 6 years ago have outstayed their welcome and are now too tall and turning brown. It takes me a good 40 minutes to chop them down close enough to the roots to cover them with pots. We both light a candle for Alex before we leave. Must remember to chase the crematorium over their promise to give £150 to charity for desecrating his garden. been 4 months now and we’ve yet to get confirmation that money has changed hands. After a walk on Chislehurst common we head for Pizza Express and munch our way through the kids menu ( don’t ask why, it’s complicated). Joseph spots a friend from school there and says hello but it’s tough seeing people going about normal family life sometimes . It’s not jealousy, but it is borderline envy. We’ve rarely had a chance to enjoy family meals out over the last few years. It’s certainly been at least 11 months since we’ve been anywhere together other than Joseph’s sports day - and Josh slept through the majority of that in his wheelchair. Back at home we opt to give bath night a miss (Joseph’s not mine ) and go for swimming and a shower early tomorrow morning instead. There’s little new news from the hospital other than Josh is now back on a constant morphine drip along with the pulses and Paracetamol, so there’s been no signs of improvement there.
