Monday 21st September
Play therapist arrives at 10.30am and offers to watch a DVD with Josh. Manage to persuade her to return at noon and build and paint dinosaurs instead - far more rewarding ! Nip out at 11.45am after hearing Gastro doctors won’t be doing their round until the afternoon...
Arrive back from Chinese buffet to a beaming Josh telling me the main consultant visited just after I left and told him he could go home tomorrow. My face drops. Even with my limited medical knowledge I know that’s not possible. Not only is he on TPN, which he has to be slowly weaned off, but he’s still on anti-biotic infusions down his picc line which can’t possibly be done at home. According to the nurse, nothing’s been written up and there are no plans regarding what we do next. Same old Gastro. Don’t get me wrong on this, there are fantastic individuals in the department and his consultant is terrific and we trust him implicitly but they just don’t work as a team and seem to aspire to a blame culture.
Early in the afternoon I turn down the offer of a free back massage by the resident physiotherapist as my back’s been feeling pretty good since I came in. An hour later a wheelchair we ask for fails to arrive and I take Josh downstairs to pick one up from reception as he is well enough to go out. There are none available and Josh starts to sob as he was desperate to go to The British Museum. I carry him there and we have a great time looking at Samurai swords and armour and Egyptians jars full of brains and lungs. He manages to walk back but I’m still left wishing I hadn’t passed up on the massage . He may have lost weight in hospital but he’s still heavy.
When Josh’s TPN comes up it’s wrong as Gastro didn’t put the order in writing. He’s 3 hours late going on it which means we’ll be lucky to get out at all tomorrow. Neither of us care as Josh giggles hysterically throughout Barnyard which we watch on DVD.
Tuesday 22nd September
Josh seems to have slipped off the radar since he’s started to improve.,,
His sheets weren’t changed on Sunday and I had to change them yesterday. We’re now at the point were we only ever see student nurses, which is fine depending on their level of competence and how sunny a disposition they have. Today we have one with attitude, who almost heaves with disgust when asked to pick up a urine bottle.
Things are not much better elsewhere. The hospital teacher now has Josh’s full curriculum of Key stage 2 books from school, but still insists on ironing a batik with him. Leave then doing Maths, but they are playing on a Lego game website by the time come back. Having explained to Josh that the doctor got it wrong yesterday and he can’t go home today, there is still some confusion as to when we are actually leaving. Finally, a senior Consultant informs that it will be Wednesday because it will take 4-5 days to wean him off TPN and up his elemental feed. I point out that this would take us to Saturday at the earliest and am met with an embarassed cough and the promise that he will be home before that. When I ask how, there doesn’t appear to be a plan but the BMT team is blamed by Gastro and vice-versa for the lack of one.
Today we have a wheelchair all day but can’t get out as TPN went on so late. Spend evening working while Josh watches TV after a giggle fit in the bath. Phone Claire who now has an iphone and has already worked out how to answer it when it rings. I am greatly impressed.
Wednesday 23rd September
I’m forever blowing bubbles. Well, Josh is. It’s an ongoing part of his treatment to blow down a tube into a bottle – 5 sets of 10 a day. He’s never keen but it does help. Let's hope he doesn't try it at home with a full glass of orange juice...
Today everything slots into place for once. The ward round happens before the teacher comes. The teacher actually teaches and I leave Josh for an hour doing a science project to complete a circuit and light a bulb. If he can fix the lamp over my bed in the corner I’ll be really impressed.
A swift walk and a cheese and mushroom omelette later I’m back. Off his tubes early so we’re out by 2pm in the wheelchair to London’s Cartoon Museum. Not much to see but we spend 90 minutes drawing cartoons and each other and laughing hysterically. Apparently I have an enormous nose and wear high heels.
Having haggled with the doctors to allow Josh food today if he so desires, we head for Pizza Express. Don’t order anything for myself as I know he will hardly touch his food. A nibble of a dough ball here, a sip of orange juice there and five mouthfuls of pasta is all he manages but the look on his face as he eats is pure ecstasy. This means I get to eat most of his meal including the complimentary chocolate ice cream which he doesn’t even begin to entertain. Shame.
Plan to swap over with Claire tomorrow as further Gastro mix-ups mean he won’t be home until Friday or Saturday.
Thursday 24th September
Still unsure when we are going home. Everyone we speak to seems to name a different day...
Uneventful 24 hours as we start to settle into routine of teacher, play therapist and physio in the morning and plan a break for freedom in the afternoon. This time we head East towards Smithfield Market to see the spot where William Wallace was hung, drawn and quartered - presumably after he’d finished filming Braveheart.
Down past St Pauls, across the Millennium bridge and we find ourselves at the Tate. Nip inside to play on a couple of interactive exhibits where you have to find the hidden objects in Picasso’s paintings and mix up phrases on a set of wheels to describe art. Josh comes up with best one: a urinal / covered in a sheet / displayed on a plinth equals absolute rubbish ! We both agree with the sentiment and head back across the bridge to Mcdonalds for a Happy Meal which is an apt description for how he reacts to eating it.
Just as well really as he later becomes very upset during Free Willy which we watch on our return. Michael Jackson sings the theme tune at the end which may explain why he was always grabbing his crotch. Fall asleep pondering this after doing some work after Josh opts for early night.
Friday 25th September
Beautiful sunny day in London. What could possibly go wrong...
Set off at 8.30am under Josh’s orders to pick up free demo of FIFA 10 from Game. First one in shop clutching my torn voucher from today’s Sun only to be told no PS2 discs only PS3 and Xbox. Persuade manager to give me both in vein hope hospital has one of them.
Explain to Josh who is very understanding and we soon have various people running round hospital trying to locate consoles for us. Josh sobs his heart out when they return empty handed. Amy the play therapist saves the day by tracking down a copy of FIFA 08 and a PS2 console. We play around 10 matches. Josh beats me in at least 8.
Don’t swap with Claire as Joseph sick in the night. Clear blue skies continue over the Capital but don’t get to see anything of them. Spend day in room waiting for Gastro to do ward round. They are a law unto themselves – even British Gas can tell you am or pm ! Nurses chase them but best reply they can haul out of them is that it’s imminent. Not imminent enough as they don’t arrive until 3.40pm and have nothing new to say.
Mad dash out in wheelchair round London. Look at toys we can’t afford in Forbidden Planet but we’re too late for trip round Ripley’s Believe It or Not. Share a Margarita Pizza and back for bath and linked up to feed.
Only one more night on the camp bed – hoorah !
Saturday 26th September
Saturday 26th September
Having been up at 6.30am most mornings wanting to play, Josh chooses the morning of his release to have a lie in.
Even though he has bloods taken through a pin prick in his finger at 7am he goes straight back to sleep. Don’t now how he stays so calm. When nurse comes in, he hardly stirs but raises his middle finger for her to prick. Have to explain that he’s not making a rude gesture at her. Luckily I am convincing.
Can’t stir him until 10ish by which time I have crammed 6 bags worth of belongings into 2 bags ready for our departure. Say goodbyes to nurses - which feels bizarre as we will be back in 9 days –and stagger down to reception with bags and Josh to call cab. Polish driver doesn’t know where Charing Cross is and charges £9.50 to use to get us there using his Sat Nav. Unfortunately it doesn’t speak Polish so he misses a turning and we have to go round the block again. Don’t leave tip...
Back at home jubilation and group hugs all around. True to form, Claire notices that one of the drugs we left with is wrong. – Sulphazadine instead of Sulphasalazine. Completely different drug that could have made Josh very ill.
Put him on feed for 16 hours when he sits down to watch X Factor. Sleeps with satisified smile on face and hands up in the like he did as a baby...
