Now new and improved...

Shane is still in intensive care, so this is his mum updating on his behalf. He went into theatre at 9am and the operation lasted five hours. At about half past two I was able to see him. He was covered in tubes and drains and not yet breathing on his own, but the operation had gone well. He was very drowsy all afternoon but by about six was breathing better and waking up. The breathing tube was taken out but a while later he started to have trouble breathing and became very hot and distressed. Everyone flew around. He had an emergency X-ray and ultrasound and it was discovered that he was not very good on morphine, so he was given alternative pain relief and began to do better. His repaired heart, which we could see on the ultrasound, was perfect. He had calmed down a lot by the time I left him. This morning, after a good night, he is much calmer and sleeping well. I'm on a computer in a corner of the restaurant, so can't add any pictures at the moment, but I'll update this when I get a chance to go out. Thanks to everyone for their good wishes. Our boy is doing well.

Here we go again!

Mum did a lot of phoning and emailing at the weekend and we've got a new date for my op. It's going to be next Wednesday, 29th December. So I'll have Christmas at home and then go down to London on Tuesday. It will all be over before the end of the year. I'm still nervous, but I'm glad it's not a long wait. I should be back home before term starts, though I won't be at school for a few weeks and it will be six weeks before I can do sports or swimming or bellringing. So I'll be nearly better on my birthday, 4th February.

You know what they say about a bad dress rehearsal...

Everything was going so well... Aunty Bin took us to the station yesterday and I wore the hat I made in DT. My class had made me a huge card, which was brilliant. It was just starting to snow.

From Liverpool Street we took a taxi to Great Ormond Street and found our room in the Patient Hotel. There was a panto going on, so we saw some of that, then went out to find something to eat. Mum had a message to say I mustn't eat anything after 2.30am.

I woke up a lot in the night, wondering what Friday would be like.

At 7.30 this morning, we reported to the Cardiac Day Ward. We met the nurse who would be looking after me, called Tendai. She was very nice.

I had a room to myself and got changed into the hospital gown (it's not a good look). The anaesthetist and the consultant anaesthetist came and listened to my chest and said I was OK to go ahead with the operation. A tall doctor came in and drew a line on my chest with felt pen to show where the surgeons were going to cut (though hopefully they already knew!) We were told I would be going up at 10.30. By then we had two hours to wait. So we waited.

I asked everyone who came in if I was going to be OK. They all said yes. The consultant anaesthetist explained that there would be at least 10 people looking after just me in the operating theatre and that the operation would take between 3 and 5 hours but it would only seem like a minute to me. (More than a minute to me! Mum)

At 10.20, a nurse came to say that there was an emergency in the Intensive Care Unit (ICU) so the surgeons would be delayed. At 10.30, a surgeon came down to say that my operation was cancelled. Someone they thought would be moving out of ICU had got worse and there wouldn't be a bed for me there after the operation.

We hung around for another couple of hours, hoping that maybe the operation would go ahead later today. (Well, part of me was hoping it would go ahead and part was hoping it wouldn't.) Then Tendai came in with tea and toast for me and Mum, so we knew there was no chance.

We were told to go home and they will ring us on Monday with a new date, but it won't be next week, definitely.

Mum went and had a word about how worried I've been, and they've promised that it will really happen next time.

So we came home on the train this afternoon, and Aunty Bin met us at the station and brought us home. She'd put the Christmas tree up. Everything looked lovely, but it was weird after all this time thinking I knew what Christmas would be like this year.

We've decided to think of this as a dress rehearsal. Next time it won't seem so scary (and Mum says she will pack less to carry!)

A huge thank you to everyone who has been thinking about us and sending messages. We'll keep the blog running so you know what will happen next.

You've got to be well to be ill

On Saturday I had a cough. Today I've got a cold and a cough. They won't do the operation if I'm not well. Great Ormond Street have told Mum to ring them if I get worse. "Are you worse?" she says. "Or better?" "Or about the same?" I don't have any idea. She's annoyed because I won't take any cough medicine. It was bad enough being nervous about Friday. It's worse not knowing if I should be being nervous or not.

Travel plans

My aunt Bin (yes, I know) is going to bring Mum to pick me and Kizzy up from school on Thursday 16th. Then she'll take us straight to the station to catch a train to London. She's going to stay with Kizzy until Monday, then our friend Zoe will take over. The train will take about two hours, then we'll go to Great Ormond Street to stay in a room across the street from the hospital. The hospital will text Mum in the afternoon about the time of the operation, because I can't have anything to eat for several hours before the op. Mum will know then when I have to stop. Above is a map of the hospital. I'll be in the light green bit.

Scared but...

I'm terrified about the operation. Mum says that it would be more scary not to have it, because if I don't, one day my heart won't be able to go on any more. If the op goes OK, I won't have any more heart problems at all – ever. And now is a good time to do it. I know she's right, but I wake up in the night sometimes and can't sleep. It's hard to look forward to Christmas with this big thing in between. I'm glad my family and friends will be thinking about me.

My heart and me

I was born in Wales in 1999. When I was a few weeks old, doctors noticed that I wasn't doing well and found out that I had holes in my heart. They operated on me when I was 15 months old and closed up the holes, but they knew I would need another operation before I grew up. Each year, I've been to see the cardiologist. This year, he said, "It's time to do it."