The saga continues…
Just when you thought it was safe to go back on the ward, we’re back too ! It’s a new year, but here we are again - same hospital, same Josh, same old dad ( a little older perhaps, but certainly no wiser…). So how exactly did we wind up here again ? Well, everything was chugging along rather nicely at home for a while. As far as Josh’s tummy was concerned things were and have remained stable which is great news and has given us real hope. Whilst far from normal, our lives had settled back into some semblance of routine with Joseph back at school, a home tutor for Josh a few hours a week, Claire running house and home like ‘ The Hotel Inspector’ on channel 5, and me having a relatively busy time freelancing. Then, towards the end of January, what had seemed like a harmless cough that Josh had had for some time suddenly took a turn for the worse and his temperature and inflammatory markers started creeping up. And now, after two weeks at our local hospital we’re back here at GOSH as if we’ve never been away…
So what else has been happening since we last conversed, dear reader ? Have you missed us as much as we’ve missed you ? Well, I can tell you that with Josh unable to leave the house it’s been impossible to do much together as a family, but every day spent together again has been precious and we’ve had some great fun along the way. Josh’s best friend has been over to the house a few times to play and they always end up giggling away insanely like Bond villains as they mess around on the PS2 or torture Joseph upstairs – generally the latter. Joseph has loved having Josh home, although a stray punch or two during their wrestling matches has resulted in a few tears now and again – often mine as I get clobbered by both of them. We’ve all got used to Josh being bald, although Joseph is convinced he’s from another planet because ‘ aliens are always bald’. He’s right by the way, check out the extra terrestrial beings in just about any movie - from family friendly Pixar offerings like ‘Monsters vs Aliens’ to the ray-gun blasting Martians in ‘Mars Attacks’ - and there’s never a solitary hair on their heads. A gap in the market for toupe companies in far flung galaxies perhaps ? Speaking of ET, Josh has started to resemble the lovable little alien of late. Bald head, croaky voice, pot belly and a strange waddle when he walks - he certainly doesn’t look like Josh anymore. It’s not the lack of hair. Whilst it’s disappeared off his head it’s sprouted just about everywhere else and he now has a back Sean Connery would have been proud of in his hay day. Fortunately he hasn’t developed a monobrow yet which is quite common in post transplant patients but doesn’t go away. It’s the steroids that have really taken their toll and made him look so different. His cheeks have swelled out to such a degree that he’s now a shoe-in for the next Alvin and the Chipmunks sequel. Imagine a bobble head figurine of Peter Kay and you won’t be far off the mark.
The first few weeks of 2010 saw us all in the wars a bit. Joseph was vomiting for a few days, mostly in his bed but occasionally in ours. My toothache of Christmas Eve turned into a full blooded ‘Marathon Man’ nerve jangler. I finally got an emergency dental appointment only to be told they didn’t know what was wrong. Basically it cost me £50 to be told I’m in severe pain which I sort of knew anyway. It’s fine now – maybe the tooth just died. Claire was bed-ridden for nearly two weeks with blinding migraines which resulted in our GP venturing out on a home visit, as our car battery passed away after two days of not coming out to play in the snow. Just like the good old days of the house call. I even persuaded him to nip out and pick up our prescription at 10pmfrom the late night pharmacy. Thankfully Claire seems to have recovered, although there are a few neurological tests that still need to be carried out as she’s had to cancel them a few times. Somewhat bizarrely, Josh was the healthiest member of the family for most of January, although he ended up covered in bruises every time he had the slightest knock because his platelets were so low. Luckily nobody spotted it and rang social services. We thought about literally wrapping him in cotton wool, but they don’t sell big enough rolls in Boots.
Our first trip back to Great Ormond Street went smoothly. We turned it into a family outing and parked right outside the hospital on double yellow lines with our blue disabled badge proudly displayed on the dashboard to repel traffic wardens. The doctors were so pleased with Josh’s progress that the weekly visits were immediately changed to two weekly and then monthly after that. Deep snow in Kent kept us from making the next one and the clinic was packed the week after that. It’s strange that you go to so much trouble to keep your child isolated at home, but then you end up kicking your heels for two hours in a waiting room packed with parents and relatives coughing and spluttering away. Surely there’s a better system ? Reading the paper while we were waiting I spotted an article that said the Meerkat the play specialist gave Josh on Christmas Eve was actually a limited edition of 5,000 donated by Harrods and that they’re going for nearly £1000 each on ebay. Shame we threw the box away as we didn’t have room in on our suitcase ! Mind you, I think ours may have been damaged stock as it sounds like a peacock being throttled when you press its tummy rather than saying ‘ Simples’. We also had the first part of Josh’s post transplant physio assessment done that day and the results were really encouraging on every level.
Josh started eating in January which was great news. Claire kept badgering away at the gastro doctors and dieticians until they finally admitted they didn’t have a plan in place. Once they’d said that it was difficult for them to say no to the introduction of rice and chicken which Josh devoured. Since then he’s moved on to rice pasta, sausages, roast potatoes, bolognaise, starbursts and marshmallows . We even let him have ready salted crisps – he’s low on sodium so he gets away with it. Claire also managed to sort out home tutoring through Bromley council – no mean feat, believe me. It’s bizarre that if you don’t send you children to school for 5 hours a day you can be locked up, yet you have to fight tooth and claw to get them 5 hours of tutoring a week at home if they can’t attend for health reasons. Anyway, Claire emerged triumphant as usual and we now have a young, blonde South African teacher called Marleon that comes to our house 3 times a week. She’s very good and Josh is a little in love, methinks. As long as his infatuation means he’s concentrating on his work all well and good. She’s even taught him at our local hospital when he’s been in there which is great. Claire and I manage to fill the rest of his time with key stage two work and we’ve found a few good websites that he can log on to. His school has sent through spellings and various test papers too, so there’s more than enough to keep him busy when he’s well.
Josh has had two spells at our local hospital in the last few weeks. Both times we’ve gone in because his temperature has shot up, a potential sign of infection in his line which could be very serious. Both times that’s proved not to be the case. When they’ve looked to grow cultures nothing has been found and after a week on antibiotics he’s been home. Everyone at the local told us how well Josh looked, which is hardly surprising as last time we were there he was in terrible pain had to yell at the staff to keep them out of the room as his bowels exploded on a regular basis. It’s a good hospital and well run with some terrific doctors and nurses. They’re not as geared up for cases like Josh, but then there aren’t many cases like Josh. The rooms are spacious and there’s a bathroom on-suite which is still important. The only thing I can fault them on is that all the TVs automatically switch on at 7am every morning. There’s nothing you can do about it. The first time it really took me by surprise as I thought someone had run into our room and was yelling about support for Haiti ! We managed to get Josh home during the day during our first spell inside, but it still meant a real disruption to our plans with Joseph at school and me working. Our friends have been fantastic in helping out.
A brief spell at home and Josh’s cough and breathing deteriorated again. Before a week had passed his temperature was up again and we were back inside. I’d balanced work and home reasonably well up to that point, but with half-term looming I’ve had to turn a couple of jobs down. Just as well as things were further complicated when GOSH asked to see Josh again this week. Claire and I just about managed the local by constantly swapping over, with me going there straight there from work some days and then straight back into work in the morning. We’re all feeling far more tired this time around - just out of practice, I guess.
Josh’s transfer to GOSH took place early on Wednesday morning with him and Claire dashing through London in an emergency ambulance with the siren blaring. Claire was very excited by this. Josh took it in his stride.Claire stayed with him for the first two nights here. The procedure he had, which involved a camera down his throat and sample of fluid from his lungs being taken, confirmed pneumonia again. Not as bad as last time, but not good news. Treatment has just started in earnest with a whole pick and mix assortment of antibiotics. Life should have become simpler again for us on Friday with Josh returning to our local, but they’ve just shut their doors to patients and visitors as they’re having a full-blown Norovirus epidemic ! So, it’s back in the old groove with me dusting off the blue suitcase again and heading off to London and Claire coming home to pick Joseph up from a friend’s house. Nothing much has changed at GOSH. Some familiar faces, a few new ones. At least one patient and mum that were here when we arrived back in September. Josh is on good form at the moment although he tends to need oxygen at night. Care is fine but a little haphazard at times, with medicines delivered late and the computerized system they operate here . The moment I chose to leave him for15 minutes and stretch my legs, they put him on an IV antibiotic that he’s allergic to, even though it’s mentioned in his notes and on his wristband. When I came back he was feverishly itching his scalp and trying to tear out what little hair he has. We both slept well last night though and today the sun was shining when I undrew the curtains. Let’s hope it’s not too long before it’s the curtains at home that we’re opening together in the morning.
