Wednesday, 17 June 2009

The day cometh

So we're off to St. Thomas's later on this afternoon for the second (and hopefully last) time this year. Well hopefully the last time for 7 years when the bone graft will be done.

The drill is the same as before. Arrive for a 15:00 consultation to make sure Jake is well enough for the operation and then 'at leisure' until sleep in Gassiot house opposite the hospital. Jake's been bumped up to the first operation of the day which is brilliant news as it means that he'll sleep through most of the starvation period. The downside is that I (having drawn the short straw) have to get up at 01:30 to give him his last feed. Anyway last time we had to wait around until 13:30 ish before he went down, but tomorrow he should go into theatre at more like 08:30. All being well the operation should be over by midday and the recovery can begin in earnest.

I think it's better that he has the most amount of time possible between coming round from the op and night time to give him (and Clare) a chance of a reasonable night of sleep. This time we booked Gassiot house for the second night which means that I won't have to sleep on the floor again. I know it's not about me but I'm no use to Jake after 4 hours of sleeping on a solid floor. Mind you, I'm not much better after 8 hours in a bed!

Jake will have a morphine drip up all night and this should be removed mid morning on Friday. The nurses will then take us through the routine we need to follow for the next 2-4 weeks. Firstly he'll be on a mixture of paracetamol and ibuprofen for at least 10 days and then we can slowly reduce the amounts depending on his reaction. Next he has to wear socks, secured by medical tape, on his hands. The first thing I thought about this was that he'd be uncomfortably hot but I think really the problem will be that he can't pick anything up or hold on to it. How frustrating will that be for him?! He's just learnt to coordinate his opposable thumbs and now we're taking the ability away. He's going to be very bored I think and a baby in pain plus boredom equals the square route of not much fun for any of us.

That said, this is the culmination of a long and fairly stressful year and I'm looking forward to it being over. There might well be the odd revision operation (there's another one tomorrow) and probably some speech therapy, but this should most of the hard work done and dusted.

It feels odd that after all that has gone into this blog, the point of it could almost be a thing of the past. I find it difficult to remember Jake will his cleft lip and how I felt about it. It was only 5 months ago but I'm glad of the amount of photos I took and the one on my office desk is still one with the cleft. I'm still proud of how he was born and how he looked because, albeit a bit different, that's how he started.

I'm going to carry on with the blog as I enjoy it and a few others have told me they do too. Ann mentioned that another of her sets of parents with a cleft affected child also read it. I don't know who you are, but it's good to know there's people reading it who can really empathise. So, hi to you and thanks for reading.

I think I wrote about the Clapa tea party we went to where we met a young girl who was pregnant with a baby to be born with a cleft. Well, she had a little boy and Ann says she's doing really well. She took the baby back to the next tea party and for me, that takes a lot of courage. The dad isn't about, she lives in Kingston and has no car. To get to Guildford requires a walk, a train, a bus and another walk. She's just 20 and we got the impression from the questions she was asking, that she was really worried about what people would think and how they would react. A lot of the same things we worried about but we have each other and a car. Good for her for not letting any of that crap stop her and getting on with her life looking after her beautiful baby boy.

So that's it for now. The next part of the journey starts with the 13:47 to London Waterloo.

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