We have a surgery date for T!!!

T is having his reflux surgery on the 3rd of Feb 2009!

When we turned up at the surgeon’s appointment his opening statement was – So you’re here for the surgery then? Guess so, Then I want to place a gastrostomy as well! So he will get the feeding tube or g-tube.

Talk about blow you away! P was settling the older two so wasn’t even in the room for that exchange!

T has dropped below the 3^rd centile on the charts – so seriously Failure To Thrive. Depending on what chart you look at he’s actually now on the 1^st centile. He gained 500g once the Polycal was added but hasn’t gained since and basically he doesn’t eat or drink enough to sustain himself and thrive.

So he is simply surviving on artificial calories, added vitamins, iron etc and huge efforts every day.

The operation will temporarily reduce the size of his stomach so that’ll affect his intake, he’s only able to have liquids for 6 weeks post op and so affect his weight dramatically – and then we have to work with all the learned behaviour of eating hurts so you don’t do that!

We’re still struggling daily with N on that front and our experience with W is that this is not a quick behaviour to break – W took 2 years to be able to eat enough to do without high calorie formulas. So T is in for the long haul here – and the tube will be there until he can do it himself.

The game plan is to do overnight pumped feeds so that he has the opportunity to get hungry and want to eat during the day – but with the safety net of being able to pump in all he needs over night. As I understand it, the process of weaning off tube feeds is that he has to be able to eat enough to continue to gain even through sickness – or at least he doesn’t lose ground then and is able, once well, to resume normal eating! As he improves his daytime eating we can reduce the amount he gets overnight.

I’m mentally planning for this to take about a year – working on the older two’s performance! He may astound us all and be done quickly but it certainly won’t be a couple of months – 6 probably minimum (with essentially two taken up on liquid only diet so you can’t start working on solids!).

Apparently the ‘button’ they put in is pretty much flat to the skin and just has a top you open to give feeds – the pictures I’ve seen look rather like the valve on a blow up ball! So it shouldn’t actually stop him doing any normal activities, incl swimming and gymnastics if he wants.

So we’ve been scrabbling round to find out about pumps, tubing, syringes etc and finding out who you are supposed to ask to organise it! Thanks to people going on holiday around this time (and now having 3 weeks annual leave) time’s incredibly short to actually get it sorted before surgery. What we can’t sort now will largely have to wait until the week before surgery!

So it’s all a bit scary really – having been decided so quickly in the end – although being in the wind for ages. I really thought we were just going to be stuck in this awful situation for ever. So I’m trying really hard to see this as big progress for T, his wellbeing and development – but it does feel rather like I’ve failed in one of the most essential tasks of parenting – you can’t get feeding on a much more artificial basis really!

But, if we’re going to put T through this we have to use it to the best possible ends for him and make the absolute most of the situation – I can tell you he’s not having it out only to have to put it back it – it’s going to wait until we haven’t used it for a bit first!!

Huge decision made and I only hope to God it’s the right one. But it was first suggested in Feb this year so been delayed, and P is now convinced it’s the right move, which he wasn’t 5-6 months ago so that’s all important to. Life shouldn’t change too radically in day to day terms and only get better for T. He might even have enough energy to go to Kindy!

I do feel bad about taking this option – the maybe if I’d tried this, done that, given it a bit longer – keeps coming at me. But, also although I’m relieved, I know the war is far from over and we still have a long way to go – but at least Thomas will be safe now.

And although it’s taken a year to get to this point, at least P is now confident that this is the right thing to do for T. He wasn’t before and it’s important we take this huge step together.

He was playing it down the other day – “just a little surgery” etc and I pointed out this is actually a huge step. We’re not just doing major surgery and messing with his anatomy like we did with N, but we’re also leaving something IN THERE! He’s going to be fed in about the most artificial way I can think of!

It’s a hard decision really – but I’m pulling myself together again and getting my head round it I think. It’ll be hard again when the equipment arrives, and of course the day of surgery. But at least he’s had an anaesthetic before with his gastroscope so I know he’ll do okay with that. Although that was 10 mins under or so and this is nearly 3 hours!

Just back from the dietician who has hooked us up with the community nurses and said as soon as he is home from hospital she’ll email with a feeding plan. She wants continuous feeding of 1000 – 2000mls a day! T drinks a max of 700mls total on an exceptionally good day! But she says she’ll work with what T and I feel comfortable with. Certainly I’d expected continuous feeds for a while post op – but the volume!! However his height is between the 5^th and 10^th centiles and weight below the 3^rd so she says we need to get weight on him as a top priority. She also acknowledged his long history of reflux, pain and eating problems – about $%#$%ing time!!

So pump hire and training is pretty much booked for the end of Jan, the dietician’s on the game plan, we’ve met the homecare nurse, the surgeon and hospital’s booked for 3 Feb. We’re getting the Infinity pump which everyone says is the best, it’s summer so we don’t have to worry too much about tube access through t-shirt and shorts – that’ll be a problem for later…

So as P said, time to sit back for a bit and enjoy Christmas!

Merry Christmas Everyone!