Sunday 27th September – Sunday 4th October
No idea where this last week went. Consider rummaging down the side of the sofa for it but decide it’s not worth the effort.
The normality that we’ve enjoyed from being together as a family unit again seemed almost alien to us at first with both Claire or I unsure as to who does what around the house. Given that we’ve been doing every task single-handedly for several weeks it’s understandable.Can’t be too many couples that fight over who loads the dishwasher and race to make the beds first, so at least we’re unique if nothing else.
Josh seems to adapt quickly to life at home and settles down far better than we’d hoped. Previously he’d been completely overcome with emotion on his return home and had almost forgotten how to interact with Joseph. This time they spend most of their available time playing together as if they’d never been apart. We soon settle back into the swing of making up Josh’s feeds, connecting him up at night and administering the 14 or so drugs a day that he is on, but it’s still draining. We have a cellar crammed full of various pumps, dressings, rubber gloves, feeds, bottles and more syringes than Amy Winehouse’s bedroom. Just keeping track of what we have and don’t have in stock down there is exhausting in itself.
Claire’s iPhone is the big family talking point of the week and, quite frankly, I’m jealous. My Blackberry now pales into insignificance as Claire becomes a phone-carrying pied piper and captivates the boys with movie trailers, games and music videos. Like the ad says, there’s an App for just about anything. Train times – there’s an App for that. Supermarket shopping – there’s an App for that. Practice your parking ( seriously) – there’s an App for that. Making the beds ? Maybe Claire just hasn’t found that one yet…
On Thursday, Josh and I head back to GOSH for a CT scan. What should have been a 20 minute visit stretches out to 4 hours as a blip in his urea score means the renal team have to decide whether to go ahead with the scan or not. A further mix up means he can’t have a dye administered down his picc line and he has to have a cannula inserted on the ward. This does not go down too well – especially when the first one fails and he has to have another in his other hand. As usual, he recovers quickly after a few minutes of shouting blue murder. Josh likes to snuggle into me when the needle goes in and I spend the rest of the day with a trail of tears, dribble and snot on both shoulders. Not a good look. Wonder if there’s an App for cleaning snot ?
The other big event of the week is the arrival of FIFA 10 on PS2 in our household on Friday. Pre-ordered from Game it’s the ideal pick-me-up for Josh after the local nurse arrives to give him with his bi-weekly injection. The game is more realistic than ever. You can almost count the chest hairs peeking out from the top of Rooney’s shirt. Doesn’t stop Josh feeling sick and vomiting though unfortunately.
Saturday and Sunday are family affairs - a 40th birthday party and a christening. Both are hugely enjoyable, although I stay at home with Josh for the christening, but ultimately they’re just more reminders of what we’ll be missing once we’re back ‘inside’.
You really do get institutionalized in hospital quickly. The longest stint I’ve ever done in our little cell is 6 nights and home felt so unfamiliar when I returned. You forget how to interact with people and how to cope in the outside world. It’s probably much the same as being in prison except we’re in less comfortable beds, haven’t got an HD ready Plasma TV and we don’t get meals. God knows how Josh copes given that he spent 7 months in here last year without ever seeing his home. He’s so brave.
Keep thinking of a movie with Edward Norton in it that follows him through the last 24 hours before he begins a long prison sentence. 25th hour ? Not sure, but the feeling of dread was similar to how we’re all feeling as the minutes tick away. Things will be very different this time round inside in hospital. Once Josh’s immune system is destroyed he will be vulnerable to any and every germ and infection. Nothing can enter the room that isn’t sterile. Newspapers and board games are banned, Get well soon cards have to bought cellophane wrapped and then double enveloped, clothes and night clothes washed daily and a bath and hair wash at least every 24 hours. Mask, aprons and gloves are order of the day too. There are many more rules and we have so many questions.
Just keeping track of who’s staying with Josh and when is tricky enough. Claire and I sit down and plan it all out before having to reschedule everything all over again when the phone rings and I get an offer of a few days work early in the week. I unpack my suitcase, Claire packs hers and we explain the switch to the boys. Joseph curls up on Josh’s floor again but neither of them can sleep so I carry Joseph back to his own bed an hour later. Joshua continues to read and doesn’t fall asleep until after 1am. Whether it’s because his mind is whirring too much about what’s to come or whether it’s simply because he wants to be make the most of his last few hours in his own bedroom is difficult to say, but either way it’s perfectly understandable…
Insomnia - do Apple have an App for that ?
