Monday, 12 January 2009

The big week

It is a big week, a very big week. It's a week we've been waiting for since 2.30pm, Thursday the 22nd of May 2008. That's 7 months and 3 weeks of research, anxiety, waiting and preparation for the first of three operations that we know about and perhaps others that we don't yet know about.

Since Jake was born and most of the worry about the cleft disappeared, a lot of the original issues have taken a back seat, but now other issues, those about the actual surgery have come to the fore.

Ann, our community specialist nurse visited last week and we bombarded her with questions, many of which she'd already answered when she first visited. The running order is as follows;

Weds 14:00 - we arrive at St. Thomas' and 'check in' to our accomodation which is a shared appartment annexed to the hospital.

Weds 15:00 - pre-admission clinic. Jake will be given the once over to make sure he's fit and well enough for the surgery. If he has even the slightest cough or cold they will postpone the op for at least the next three weeks. Whilst I wouldn't say we're looking forward to it all, the last thing we want is to have to come home without having had it done.

Weds evening - at leisure. Yeah right.

Thurs 06:00 - wake Jake, feed Jake, begin the starvation.

Thurs 07:00 - take Jake to the ward to get him settled and wait. The first surgery slot is 09:00 and we're more than a bit pissed off that he's not first up. The other 2 operations are not clefts and they're not on babies so I think it's a bit unfair to make him wait when the other patients could be made to understand. But I would say that I suppose

Thurs 13:00 - pre meds are administered and Jake is taken to theatre. This part will, without doubt, be the hardest for us. Jake will be fine as he'll be in morphine-induced euphoria but we'll be holding his hand watching him go under and then they will administer the anesthetic. God I'm dreading that. I'm getting bored of crying in hospitals and I'm pretty sure my sissy girl habit will be in full effect at precisely this moment.

Thurs 13:30-17:00ish - we go out, anywhere but the ward we're told, for the long wait while our brave little man has the first op to put the things in the places which nature didn't quite get right.

Thurs 17:30ish - we get the call and go down into the recovery area and watch him come round ready to feed. He ought to be hungry but he's going to seem grumpy and a bit disorientated. Not surprising really. I had a few operations as a boy and although none of them pleasant, at least I was aware of the situation and knew roughtly what to expect. Jake is 18 weeks old and hasn't got a clue of what's happening and will have no idea of where he is or what has just happened when he wakes up. The pain ought not be an issue as the anesthesia will manage that but his new lip line will feel odd and numb. Either way, we'll be braced for this phenomenon which is supposed to cause us to be upset at seeing that his appearance has changed. I can understand it, but I think it's as much seeing him groggy and fed up as much as with his new lip.

Thurs evening - we get to spend it back on the ward with the new Jake and one of us at least will get a pull down bed next to his. If there is a spare bed on the ward then the other gets that, if not, it'll be a night in a chair for me!

Friday - Jake will be monitored for a while and given another once over (I don't mean to sound flippant, I'm sure it's pretty thorough!) and as long as the docs are happy they'll send us home.

For two weeks, pain killers will be necessary and these will be a mixture of liquid paracetamol and ibuprofen and we will slowly wean him off them. We'll have to start applying an ointment onto the scar after this and over the next 18 months or so we will do this every day to help with the redness and general settling down. At first the scar will be perfect insofar as it will be the full length of the lip. After a few months the scar will begin to retract and this will cause the lip to retract a little so the repair will look better at first and then appear to get a little worse but then the scar elongates again. The skill of the repair work is to make sure that when the scar finally settles into place it is the right length and will then just grow as Jake does. In over 500 operations the surgeon has done just 2 revisions have been necessary based on where the lip / scar ultimately finished up.

So there you have it. It's gonna be a toughie this week but ultimately worthwhile. I think the waiting and bit in the theatre beforehand will be the worst but it's not about us, we have to step up and 'be a man' for our little soldier in his first battle.

I may do an mobile update at the hospital but no promises! A full entry with photos will come Fridayish depending on how much sleep I get in an upright chair. In short, don't hold your breath!

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