Harrison Ford muttered it in the fourth Indiana Jones movie. Danny Glover in Lethal Weapon 4 with an added expletive. Clint Eastwood’s been saying it for more than a decade. Every ageing action hero dusted off for one last mission has come out with the line ‘ I’m getting too old for this.’ Today I know just how they feel. It’s my 51st birthday and, whilst there are no huge explosions going off around me, I’m back in the thick of the action with Josh again at Great Ormond Street. So how did we end up here this time ? Are you sitting comfortably ? Good, then I’ll begin.
The month began with Claire taking Josh up to GOSH for his much delayed colonoscopy and biopsy. The gastro department were keen to take a peek at the state of his bowel and stomach and who were we to disagree. I say keen, but the scope was originally scheduled for Christmas Eve so they could take a look before he started eating. Four months and some 240 bowls of pasta later, it’s difficult to say exactly what they’re looking for. Anyway, I dropped Claire and Josh off at around 11am before returning home, but it was closer to 6pm before they actually had a room and a bed. The next morning, after I’d taken Joseph to school ( no mean achievement as it was ‘dress down day’ and it took him 25 minutes and more outfit changes than Lady GaGa to decide what to wear) Claire called to tell me Joshua’s surgery had been cancelled as his bloods had dropped significantly overnight and whilst the gastro team were happy to go ahead with the procedure, the BMT team had overruled them. I set off to pick them up just after midday but we were left sitting around for a further 6 hours waiting for one of his drugs to come up from the Pharmacy. Things only sped up when we threatened to leave without it. After a flurry of panic, the drug arrived an hour later but couldn’t be administered as it was in the wrong form. We left at this point, having arranged for it to be given at our local hospital, but still hit rush hour traffic and didn’t get back until after 9pm which meant Joseph had to spend the night at a friend’s house. This was great news from his point of view as he got to sleep-over, although Josh was disappointed not to see him until the next day.
Overall, things have been okay with Josh. His tummy problems seem to have settled, although his cough has never really gone away and the inflammation in his knee and ankle seems to come and go without rhyme or reason. The hardest thing part of daily life for all of us is that everything can, and does, change at a moment’s notice. Daily routine is mind-numbingly dull, as one of us has to be at home with Josh all the time as he’s pretty much housebound and yet it’s completely unpredictable at times too because of his condition. A few weeks ago we accidentally overdosed him. This isn’t as serious as it sounds and has happened several times in hospital over the years when nurses have either failed to check the computer or forgotten to update it after administering them. This time we were all to blame to some extent, even Josh who failed to comment when Claire put his drugs down his line just 30 minutes after I had. As a result, Claire had to take Josh straight to our local and stay with him overnight, while I stayed at home and worked until 5am, knowing I might have to take over the next day. Our trips up to GOSH for clinic have continued relatively untroubled overall, although we’re still a long way away from getting any answers as to why his immune system is dropping off after such a bright start. They are frustrating visits as they always involve a 2 hour wait followed by a 10 minute recap of what drugs he’s currently on because the consultant either doesn’t have or can’t be bothered looking in his file. When we do get down to discussing his blood results and general health it all feels a little haphazard. The last time we went I was virtually cross-examined as to why he wasn’t on an anti-fungal drug, only for me to check our own records and tell them they were the ones who took him off it. When we went downstairs to the pharmacy to collect a replacement, we were told there was a three and a half hour wait. Given there was a mother and child screaming about being kept waiting 5 hours, we decided to go home and I collected it the next day. It wasn’t exactly convenient, but at least we got home at a decent time and Josh had a couple of hours of doing something constructive before he went to bed. Taking the car up is fine, although traffic is always unpredictable. Several times we’ve arrived an hour early and it’s hard to kill time when he can’t actually go anywhere. I took advantage of our disabled blue badge last time and parked on double yellow lines outside WH Smith’s in Holborn to treat Josh to a few packs of football cards. He’s now collecting Champions League, World Cup, Match Attax Extra and Match Attax England cards, along with Man United stickers and Premier League stickers. The total cost of that little lot adds up to about half Ronaldo’s transfer fee to Real Madrid ! We were up for a Barium follow through that time. He’s had it done before and it’s generally unpleasant with around 1000ml of Barium dye going down his line to reveal what’s going on in his stomach on the scan. He’s found it all too much and vomited it all back up before now, but this time he was fine. The Barium was used to see if he has a reflux action going on in his stomach as there are traces of toxins in his lungs. They did detect a slight reflux, but a month on we still don’t quite know what that means, although it might explain his constant lung infections. His steroids have been upped and some of his other drugs have since stopped, just in case they’re the reason his neutrophils are so low. On a previous visit, he was given new AFO’s which are basically leg braces for both feet that he needs to wear overnight to try and straighten them and make them more flexible before he’s put into casts next month. Josh has hardly worn them as his legs have too inflamed most days, so we may well have to cancel the procedure. A hearing test that we asked GOSH to carry out showed that glue ear has returned, in both his ears. He’s had 3 lots of grommets put in previously, so another set is out of the question for fear of scarring the ear and causing permanent damage. If they don’t clear in 6 months, hearing aids would be a temporary solution. I’m praying not as I have first-hand (or ear, to be precise) experience of how difficult it is to adapt to artificial hearing. Josh’s eyesight has also deteriorated but not as much as we’d feared. He now has some rather cool looking prescription sunglasses as well. All we need is some sun.
Easter came and went with more rain than sunny spells, as per usual. Happily we weren’t in one of the 23 million cars on the road heading for the coast, but we did manage a family outing to our local newsagent with Joseph on his bike and Josh pedaling a huge tricycle that out local physiotherapist managed to find for him. It has a handle on the back so we can push him along if he tires, which is exactly what happened. It was great to all be out together though, even if it was only for an hour. I’ve been taking Josh to the cinema recently too. We go to matinees at Bluewater on school days and are generally the only people in there. Claire came with us to see Alice in Wonderland in 3D, which had him ducking in his seat a couple of times, and he really enjoyed Percy Jackson and the Lightning Thief a couple of weeks ago - happily rustling and munching his way through a packet of ready salted crisps at the same time. He’s still not allowed to eat most things ( soya, wheat, gluten and dairy are all off-limits) but has a healthy appetite nevertheless. This was his third Easter without chocolate. All the more for Joseph, but very sad as he really misses it. He’s still on elemental feed at night through his line but we’re slowly reducing the amount. His bed is still propped up on a 45 degree angle like a hospital one to facilitate the feed.
The week after Easter things took a turn for the worse. Josh started getting severe pains in his bottom. This escalated into him having about 15 attacks a day. He shivers and shakes and howls in pain as he passes the tiniest amounts of poo. Symptom wise it’s a real sense of déjà-vu and the long, dark days before transplant. He has to go standing up in pull-ups rather than on the toilet because of the pain. It’s hard to bear when you see him in so much agony. The knock-on effect of all this is very little sleep for any of us and sheer confusion for Joseph, as Josh tends to snap at him when he’s having an attack. He ordered Joseph not to stare at him the other day and Joseph spent the next 10 minutes walking round the house with his eyes closed so he wouldn’t upset him - fortunately he didn’t bump into anything !
It’s virtually impossible to get any jobs done at home at the moment as Josh is so demanding. Things came to head on Friday April 9th. I was in Jersey for the day on business, although it has to be said I had a fantastic day out in the sunshine once the meeting was over. It was only when Claire called, just after I landed at Gatwick, that I learnt she’d taken Josh into our local that morning and that they suspected he had an anal fissure - a small tear just inside his bottom which would send his bowel muscle into spasm. This would result not only in pain of child bearing proportions, but also explain why he needs to go to the toilet so often. Let’s hope this is the case as it will heal itself over time and is far preferable to the idea that his Crohns has somehow returned. So while I was enjoying lunch overlooking the seafront in sunny Jersey, Claire spent most of the warmest day of the year in hospital rubbing cream into Josh’s bottom. Joshua’s blood results revealed he is neutropenic again and his platelets have dropped. He was given treatment for this with a GCSF infusion ( don’t ask) that day and again on Sunday. On the plus side, Joseph spent Friday picnicking at Knole Park after Claire hastily arranged for a friend to look after him for the day. He continues to have a far better social life than the rest of us put together and started football training at Bromley FC on Saturday. He supports Chelsea, Man United and England and has perfected the robot celebration he’s learned from watching Peter Crouch on YouTube. Next month it’s his birthday. He’ll be 5 going on 15 and will probably ask for driving lessons and a subscription to FHM.
And so back to the present. Josh and I set off for Great Ormond Street this morning, straight after I’d opened my birthday presents, and arrived in good time. Very little has changed here, even though Fox Ward has been relocated whilst renovation work is going on. The whole reason for arriving early was so his bowel prep could begin, but the nurse assigned to Josh for the day mistakenly thinks this has already been done and it’s only when I ask what the delay is that I discover this. It’s eventually given, but 3 hours late. The other drug Josh needs to clear out his bowel isn’t even on the ward and is administered 9 hours late. This is crazy as they knew we were coming and I’d repeatedly told them that he tends to be late emptying out his bowels. If he’s not clear by the morning they won’t be able to do the colonoscopy which is scheduled for 9am and everything will have been a complete waste of time. The other bizarre thing is that whilst I brought all his current drugs with me and we’ve been giving them to him for the last 2 years or so, I’m not allowed to keep them in the room and have to draw them up under supervision at the other end of the ward. I understand why this is protocol, but given that the nurse on duty isn’t familiar with half of them she can’t actually supervise anything at all. While I’m out of the room doing this, Josh is on his own and does a wee in the toilet so we don’t get a sample. Brilliant. Josh and I watch yesterday’s football and a movie in the afternoon. He’s in good spirits but nods off at around 4pm and doesn’t look like waking up until the laxatives kick in. A bed finally arrives for me around 9.30pm and I set off on an undercover mission to find a pillow. I brought one up in car in case of emergency, but manage to steal one from another ward so I’m all set for the night. Hopefully I won’t get much sleep because I’ll be up helping Josh through what should be a rather eventful 12 hours of non-stop pooing.
It proved to be a very eventful night indeed. Mostly because the 6ft z-bed they gave me wouldn’t squeeze into the 4ft alcove under the window, which meant I had to move all non-essential medical equipment and half the furniture around the room to accommodate it. It was only after stacking two armchairs and a suitcase in the bathroom that I actually made any progress, although I guess I should have brushed my teeth and washed first as this made it impossible to reach the sink. By the time I’d made the bed, done all Joshie’s meds and settled down for the night, his bowel prep meds had started to take effect and he was filling his pull-ups every hour on the hour. By 5am he’d started to slow down a little and we managed a couple of hours sleep, but I was still concerned his bowels were far from clear. When I raised this, I was told not to worry as his last poo was a grade 6. Yep, they grade poo here and 6 is as watery as it gets, apparently. Josh was called down earlier than planned and one of our favourite nurses here somehow managed to commandeer a wheelchair. Josh was nervous about the bone marrow aspirate. Basically this involves a needle being inserted into his back and through his pelvic bone to draw out a sample of bone marrow for them to analyse, so you can see why he’s not keen. Once he’s gone under anesthetic, I wander down to the café for breakfast and to phone Claire. When Josh comes round an hour or so later he’s a little grumpy but otherwise okay. Unfortunately the feedback from the team is that his bowel prep was unsuccessful and it was difficult to see anything with the camera. It would appear his poo needed to be grade 7 for anything to be visible. What they could see looked good, but the biopsy will tell us more. Interestingly, the nurses notes suggest all the bowel prep drugs were given on time, so I launched a little internal inquiry when we were back on the ward and have been assured this will never happen again. We shall see. Back on the ward, Joshie’s breathing is slow and labored for half an hour or so and the nurses are concerned. Thankfully, he soon picks up and is eating and drinking. A doctor pops his head round the door a few minutes later to say that we can still go home today as planned, but they would like to do an ultrasound scan on Josh’s knee and ankle. This is not a great idea. Partly because it means we probably won’t get home until after 9pm, but mostly because his knee is far better than it was a month ago when they weren’t too concerned and they’ll learn nothing new from another scan. The doctor agrees and we’re back on schedule. All that remains is for a couple of antibiotic infusions to be done and we can leave around 1pm. This is great news as it means I can drive Josh home and get back up to London in time for a meeting to take a new brief Just one teeny-weeny snag. Once we’ve packed and dressed, the nurse comes in to tell us that she has some bad news. One of the antibiotics requires three doses 8 hours apart, which means we’ll have to stay in another night. She is hugely apologetic, even though it isn’t her fault, but this doesn’t stop Josh breaking down in tears. He even manages to utter a four letter word, thankfully the one that starts with an .‘s’ rather than an ‘f’. Who can blame him ? Truth is, I know the blame lies with the gastro department once again. They just never communicate anything properly. After kicking up as little fuss as possible, as the only people around are doing there best to help us, we’re back on track once again. One of the nurses and a doctor I managed to grab in the corridor come up with a plan that means switching his drugs from IV to oral, so we can administer them at home. Good work indeed and typical of the attitude and dedication that the majority of people working here actually have. Great Ormond Street is a wonderful place where miracles happen on a daily basis, but where common sense and communication often goes walkies. By the time all the paperwork’s been done, it’s gone 5pm but at least we’re home before it’s dark. At least we’re home full-stop. Josh has an early night as he’s shattered and so am I. To give you an idea of just how incompetent his bowel prep was, he’s still emptying out today – more than 24 hours after the colonoscopy. As I write, Claire and Joseph have just left the house for his tennis lesson. Claire needs catch up on food shopping as I had the car up at GOSH. Josh is reorganizing his football cards before we start work on his level 5 English papers. It feels like we’ve been away for so long,I’m genuinely surprised to see my birthday cards are still up in the lounge. I really am getting too old for this s***.
