Thomas' Out patients Appointment - 24th October

Thomas had a clinic appointment today at the Heart Unit in Birmingham. They checked his oxygen saturation levels and these were 71/72% so they are beginning to drop but this is to expected as he grows. It is normal for babies with single ventricle conditions like Thomas' to be in the 70's, babies without heart problems are nearer to 100%. We asked the registrar whether he could give us an idea of when 'before Christmas' Thomas next op might be and he proceeded to tell us he had checked with Mr Barron's secretary and we are on 'the routine list' and it is likely to be January/February time. This is obviously different to what we were told on 6th Ocotber when we met with the surgeon. We appreciate there may be other babies who's need is greater but equally we don't want Thomas to deteriorate, we want him to be as strong as possible for the operation. It feels like we are being pushed down the list because he is doing well so we have asked the registrar to find out what is going and let us know. Anyway it's great that the little man is doing well so we must try and focus on this but we do feel like life is on hold a bit at the moment.

Thomas started saying 'Da da da da' last week, much to Paul's delight seeing as he has been saying 'Ma ma ma ma' for a few weeks now :-) He's also showing the first signs of being interested in crawling. He wants to be on his tummy and he pulls his knees up so his bottom is in the air. He's already getting frustrated by it though and has got a long way to go yet before he's off....

Here's a piccie of our little rascal......

Meeting with Thomas' surgeon 6th October 2006

We met up with Mr Barron (Thomas' surgeon) and Pauline (our cardiac liasion nurse) last Friday at Birmingham Childrens' Hospital. Mr Barron said the results of Thomas' catheter were as they expected and so he talked us through the next planned operation which is called a cavo-pulmonary shunt. During this operation he will remove the gore-tex tube, that he placed in Thomas' heart during the first operation, and take the upper body vein (the vein that drains the blood from the top half of the body back into the heart) and connect this straight to the pulmonary artery so the blood goes directly to the lungs and by-passes the heart. It's mind boggling isn't it!!!

Mr Barron said the operation is major, it's open heart surgery so Thomas will have to have his chest opened this time and go on a heart and lung machine during the op but the results are generally good and babies are usually in hospital for about a week. BUT, as they always say, every baby is very different and therefore it all depends on how the little fella copes with it all. I'm absolutely dreading it but have every faith in Mr Barron and his team and I know that this is the next stage in Thomas' journey.

Mr B is planning to do the operation before Christmas, which doesn't feel very long away at all, and we should be notified 2-3 weeks before the planned date. We have also agreed to go on the cancellation list meaning we could be in called at short notice - which, to be honest, is probably better so we don't have as much time to think i.e. panic about it.

All in all it was a good meeting - it was good to go and check our understanding of the next operation and gave us a chance to ask all the questions we had looming around in our heads. We just need to hope that our little man can be a star once again and come through with flying colours!

The Great North Run for Little Hearts

Last Sunday (1st October) Paul, his two brothers (Mark & Simon) and our Sister in Law (Rosa) all did the Great North Run to raise money for Little Hearts Matter, the charity that supports families of children born with a single ventricle heart condition.

The sponsorship has gone fantastically well, many of you reading this have dug deep into your pockets and generously sponsored one of the Hooks' runners, and for those of you who haven't ....then shame on you ;-) The total is increasing by the day and with the pound for pound fund matching by Barclays and Royal Bank of Scotland looks to be in excess of £3500. I think you will all agree to raise this amount of money is brilliant and it will make all the difference to Little Hearts.

Tomorrow (6th) will be a year to the date that we were diagnosed with Thomas’ condition, Little Hearts has been an incredible support to us over these last 12 months and I know they will continue to support us and many others for a long time to come.

I am so incredibly proud of the Paul, Simon, Mark and Rosa. To run 13.1 miles (apparantly that 0.1 makes all the difference ;-) is such an achievement and they have shown real commitment to ensure they were physically ready for the big day. All I can say is that Thomas is such a lucky, lucky little boy to have a family like ours.

In other news....We have an appointment tomorrow with Thomas' surgeon at Birmingham Childrens Hospital to discuss his next surgery so I'll update after then.

Mark, Rosa and Simon Hooks, Our little rascal & Daddy Hooks