Thursday 3rd March
Guess what ? Josh’s MRI didn’t happen today as planned. He was supposedly down on the list, but nobody seemed to know anything about it and it was only when Claire followed up at midday that they told her it wasn’t happening. By this time Josh was awake and gasping, having gone without food or water since last night. Gastro came to see him again and one of their top consultants is working his way through all Josh’s ultrasound scans to make sure they haven’t missed anything. Next time he takes a neurological dip they want to check his ammonia levels as they can affect the brain. They still haven’t ruled out feeding him beyond his stomach and bypassing the pancreas. Josh slept most of the afternoon, waking up around 5pm to eat, vomit and have a bath before watching ‘Despicable Me’ on DVD and flirting with the nurses in the corridor before bed. He’s scheduled for his MRI tomorrow afternoon, but whether it will happen then is anybody’s guess. He’s due another platelet transfusion overnight so he can have a lumbar puncture tomorrow , but they’re struggling to find anyone to do it. It would be a shame if they can’t as it’s more important than the MRI and we’d rather he had one general anaesthetic than two. My day passed quickly with a visit from an old college mate to discuss business in the morning, followed by washing, ironing and lots of recording onto DVD for Josh. John Lewis can’t fix our DVD recorder and have offered us yet another new one under the guarantee. This isn’t as good as it sounds as the one they’re offering would render all our current blank discs useless, so I’m happy to stall while I use them all up. Elsewhere, my beloved sister has told me mum’s cat is feeling under the weather and has been diagnosed with inflammatory bowel disease, just like Josh was originally. As my medical knowledge is limited to humans there’s little I can offer up in terms of advice other than recommending a CAT scan...
Friday 4th March
Claire is woken by a nurse around 8am to be told they’ve brought Josh’s MRI forward. Luckily he’s still asleep and hasn’t had any water for several hours. He’s been feeling nervous this time and had hoped we’d both be with him when he went under, but there’s no chance of that now it’s moved. I jump on a train and head for the hospital as soon as I can and find him awake after the anaesthetic. We won’t get the results of his MRI until next week. They had a few attempts at a lumbar puncture but were unsuccessful in drawing off any cerebral fluid, so for Josh it’s a case of all the pain and no gain. Claire decides to hang around for ward round although it’s not great news when they update us. They’re now saying HHV6 isn’t a known cause of pancreatitis, something Claire told me after a 10 minute internet search yesterday. They don’t believe it’s the reason his immune system’s repressed now either and, as there’s no evidence that it’s in his brain yet, so it may well not be behind his neurological dips. Given how convinced they were just two days ago that they’d found the Holy Grail, it’s a very disappointing end to the week and leaves us back at square one. Actually it’s square minus one, as we now know Josh has yet another virus onboard that he needs to fight. A gastro doctor I’ve not met before pops in for a chat and wants to know more about Claire’s family history. She knows nothing about his recent neurological problems as they’re waiting for BMT to talk the case through with them rather than simply read the notes. Josh’s teacher lets me know she’ll be an hour late today and when she turns up I have just enough time to queue and pick up an internet access card so Josh can finally use the TV to visit some of the kids educational sites and play all the games that iPad won’t let you. Josh is asleep when I come back up having falling asleep during school, the perfect opportunity for me to check it works before I surprise him with it. Somewhat predictably it doesn’t work and the only department that can fix it have already packed up for the weekend. While Josh is asleep, we get a strange request to take him down for an ultrasound, but as nobody up here has authorised it or told us it was happening, I wave them away. I suspect it’s come from gastro but there’s little point in doing one at the moment and it’s certainly not worth waking Josh for, given that he’s feeling unwell and been vomiting. He sleeps for a couple of hours then does several pages of a new verbal reasoning book Claire bought. He complains of being hungry around 6.30pm but a few strands of grated cheese seem to placate him. When his TPN arrives it comes with lipids for the first time since his pancreatitis bouts started, but there’s nothing in the notes about it and we’re hesitant to give it. This is all typical gastro. They’re decisive when they need to be but never write anything down or let anyone know what they decide, so it’s rarely actioned. Claire and I both have a horrible feeling we might end up under their care back on Rainforest soon. I hope we’re wrong as, lack of communication aside, the ward’s a dump and it’d be like moving from a Hampstead mansion to a bedsit in Kilburn.
Saturday 5th March
The mystery of the lipids is solved to some degree, but not until late morning when it’s too late to give them anyway. It’s documented that Josh should have them 3 times a week on Tuesdays, Thursdays and Fridays, but then it’s been crossed out. They’re meant to give him added selenium yet, when I look at the ingredients on the bag, there’s none in there. We’ll have to wait until Monday before we know exactly what’s going on, but there’s no real hurry now as his visit to surgery on Tuesday for a scope and surgery has been postponed. He was due to have a G-J (short for Gastrostomy – Jejunostomy) tube fitted that feeds into his stomach and small intestine, but it’s not happening now as there’s an emergency case scheduled for the same day, which is fair enough. I learnt today that ‘gastr’ is the Latin root word for stomach and ‘stomy’ means ‘new opening.’ It’s boring trivia like this that makes me the person to avoid at all costs at dinner parties. Josh wakes relatively early and remains vomit free until he sips water, after which he upchucks almost immediately with some velocity. We have a good morning although he runs out of steam around 3pm and needs a mid-afternoon nap. He’s up an hour later sticking stickers and checking the football scores before we settle down for the evening to watch a bit of Saturday night TV. Claire also had a busy morning followed by a quiet afternoon and Joseph is now the proud owner of a pair of black and gold, adult size one football boots following a successful debut at a new Saturday morning soccer club. With a bit of luck Chelsea will spot him and he’ll be earning £40,000 a week soon and I won’t have to go to work every day to bring home the bacon. Oh, hold on a minute, I don’t do that anymore anyway...
Sunday 6th March
Not sure if you’ve been watching the Channel 4 documentary on The People’s Supermarket, but it’s literally 20 seconds walk from the hospital and our nearest shop. It’s a brave but flawed concept, although the idea of stocking the curly cucumbers and hunchbacked peppers the big four supermarkets turn down due to EEC regulations or aesthetics is inspired, as is the concept of using food that’s about to expire as ingredients in something new rather than throwing it away. Hopefully it won’t become too successful, as since it’s been on TV I’ve had to start queuing for my Sunday Papers and Wispa bars. Josh is up early and vomiting by 9.30am, even though there’s been nothing in his stomach except drugs for at least 12 hours. He’s fine after that but tired by midday and has a quick nap before Claire and Joseph arrive. The boys start to play together, but Josh’s tummy is giving him grief and he has to stop after a few minutes. They start watching Man Utd v Liverpool, but with the Red Devils trailing 0-2 after 45 minutes I take Joseph off for something to eat. Josh is in bed and in pain when we get back. Joseph and I drive home and play football in the garden. Claire’s decision to buy him proper boots was a good one as they’ve not only improved his ball control, but his studs are doing a fantastic job of aerating the lawn and mean we don’t have to call Green Thumb this Spring. Claire calls around 6pm to let me know that Josh is in severe pain again, although I don’t need telling as I can hear him screaming in the background. His lipase and amylase tests show his digestive enzyme levels have shot through the roof again which suggest his pancreatitis is back. She texts an hour later to tell me the pain team have been up and Josh is ecstatic as he’s got his beloved green button back to push and the pain is slowly starting to subside. Here we go again...
Monday 7th March
It’s only just sunk in that it’s March already. Nearly 3 years have passed since Josh was first admitted to Great Ormond Street and I left work and here we are, still living in hospital and none the wiser about what’s wrong with Josh or when he’ll be out. The only thing we know for sure is that when he does finally come home, it’ll be to a very different life from the one we’d envisaged for him. Whatever the future holds for him there are so many things, like his hearing, his sight and his lost education to name just three, which will make life a constant struggle for him. We rarely think about the future these days because it’s just too heartbreaking – in truth it’s not just because of what’s happened to Josh, it’s been that way since Alex died. Forget days, weeks and years, our lives are so unpredictable we can’t even plan the afternoon without something putting a spanner in the works. It’s like Spring outside today, but our lives remain on hold, frozen in perpetual winter like the land of Narnia without Aslan. It’s gone 10am before I manage to shrug the blues away and start pruning and sweeping in the garden while the sun shines. The day flies and before long Joseph comes running out of school with a smile on his face and 3 ‘good work’ stickers proudly displayed across his chest like medals pinned on a war hero. He excels in his swimming lesson today too, even though it takes place in the adult pool due to an easily identified floating object being found in the kid’s pool. Claire tells me Josh was trigger happy on his button and maxed out on his pain relief just a few hours after being put on it yesterday. He’s been a little slow and remains tired and in bed today. Gastro have been up to see him and have admitted that the GJ tube is unlikely to work, although they may well still press ahead with it. It’s their belief that his pancreatic duct has gone into spasm for one reason or another and, if a second opinion confirms this, they’ll look to operate and widen it. This will be done at UCLA hospital rather than GOSH. He’s not eating at the moment because of the pancreatitis, which is just as well as there are no dieticians in the hospital as far as we can tell, so random food continues to be sent up. They always seem to be completely unaware of what’s happening to Josh anyway and several steps behind the consultants, so it’s no great loss. BMT are excited about HHV6 again but it’s hard to know why. They’ve found nothing new, but in the absence of everything else they still believe it could be the key to everything. The repercussions of this are dangerous as they want to put him on a drug to tackle it which would lower his immune system and potentially let JC get a grip of his brain again. On top of that it’s extremely heavy on his kidney function and would mean stopping his Aciclovir, which could potentially put his remaining eye at risk. We’ll discuss it at ward round tomorrow but I guess we have no choice but to trust their judgement. There’s no doubt they care deeply and I can’t think of a better place for him to be, but most of the big calls they’ve had to take so far have had catastrophic effects...
