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Pretty noisy on the ward last nite and T was up at 5.30am wanting to play his DSI :-) He had to hav breakfast by 6.30am tho so that did give me chance to get a big bowl of crunchie nuts and a slice of toast down him. He's now happily playing. He said 'it's a big day for me mummy isn't it'. It certainly is bless him. I could quite easily pick him up and run for the hills but equally i'd rather not put it off any longer and just want to get to the other side of it. Keep everything crossed for him today. Lets hope he uses that steely determination of his to come thru smoothly and safely.
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We're here all installed on the ward. (Ward 12 is being refurbished so it's moved to ward 5). Thomas has had all his observations. Sats 84, weight 19kg he's had an ECG, chest xray and his cannula is in. He has been an absolute star so far! He's on the list for surgery tomorro afternoon. Fingers crossed it goes ahead otherwise we'll be sent home for the wkend which we really don't want to happen. The surgeon has been and was v positive abt the operation, obviously there are risks but Thomas is in the best group to be having this type of op. So far so good. Please keep everything goes ahead as planned tomorro and our precious boy does really well.
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No bed...

Just called the hospital and apparently there is no bed available on the ward. They want to keep us on hold and will call us when they know the definite position. Hmmmm......watch this space!

Back home....

Well we called this hospital at 9am this morning and was told there was a bed for Thomas and we should report to the ward by 1pm. So, after having a bit of a panic at the reality of the situation, we gathered all of our stuff and off we went only to be told, the minute we arrived, that there was a very poorly baby who needs an operation tomorrow and therefore Thomas' operation would be Thursday at the earliest. Initially we all felt pretty fed up, we absolutely appreciate and accept the emergency situation we just wish we hadn't actually arrived on the ward. A simple phone call would have saved us packing the car up and getting ourselves all psyched up but in the grand scheme of things I suppose it's better to be at home rather than hanging around waiting in hospital.

So, we decided to go out for Thomas' favourite tea which is Harvester ribs. It beats hospital food that's for sure :-) Paul and I are both feeling a bit shattered this evening, it's been a bit of an emotional rollercoaster today and so an early night is in order. Lets see what tomorrow brings........

Fontan Operation

Well, here we are one sleep to go until we are due in hospital for Thomas' Fontan operation.

He's actually looking forward to getting his heart fixed and has been counting the sleeps. We have spent many hours playing at 'getting my heart fixed' and swallowing tic-tacs in one go (Thomas will be on warfarin after the op and we are told the tablets taste disgusting when they're diluted so it's better all round if you can just knock them back). He knows he's going to be sore and uncomfortable, he know all about the mini shopping trolley he will have to carry his buckets and all the other horrible bits but he has also seen how this operation can make a big difference. We met Ali and Charlie Turner through Little hearts Matter when I was pregnant with Thomas. We are now great friends whose boys just happen to have similiar heart conditions. Thomas has seen how the Fontan has made a difference to Charlie and can't wait to try and keep up with him. It's really lovely hearing them talk about their hearts and share their stories.

I think we're as prepared as we can be for this operation. There really is only so much prep you can do and while I would like to avoid it forever I know it's got to happen so just want to get on with it.

We've spent the last week at the caravan in Cornwall. The weather was fantastic and we spent every day on the beach, riding the sand dunes, building sand castles and paddling in the sea. It was a brilliant distraction and we had a lovely time. I was amazed at how far Thomas walked (at his own pace) and seeing him clamber up the sand dunes you would never believe he only had half a heart and was due a major op. He's a very cute character though, he knows what he can do and if he can get other people to do stuff for him he will. There is definitely a BIG difference to Thomas' activity levels compared to his peers. The other kids were bounding up and down the sand dunes 3/4 times compared to Thomas' one BUT he was there enjoying it just the same and why carry the sand board up the dunes yourself when you can get your mate to do it for you ;-)

I will keep you posted in these next few weeks. I can update the blog from my mobile so keep checking it. Please keep our little man in your thoughts and send positive vibes. It's really not going to be a nice experience for him but we have to be strong for him and keep looking forward.

Here's a few photo's

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Updating by text message - testing testing!
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Testing

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Testing from my mobile
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Testing

Just testing whether I can update the blog via emai