Thursday, December 29, 2005

Open Heart Surgery

They didn't really do the band tight enough. I was still getting really breathless and started showing signs of heart failure. They decided to go ahead and operate . They needed to close 2 holes, one large one in the atrium and one in the ventricles. They also had to take the band off the pulmonary artery. Mommy and daddy were confident it would be ok, there's a 99% success rate for the kind of operation I was having. I was in theatre for 5 hours, I did so well, a machine called a bypass kept the blood pumping around my body while they closed my holes. My grandpa gunter had a bypass once.

Luckily I didn't get an infection and was moved to Ladybird ward quite soon. Mommy and daddy took me for walks in a nearby park, they pushed me in a hospital pram, it reminded me of Mary Poppins... it had huge wheels and was so big i could've taken a friend along! I loved staring at the leaves in the trees, it was so nice to get some fresh air. We celebrated new year's eve in the ladybird ward, mommy and daddy had champagne and smoked salmon next to my bed, the nurse caught them but she didn't tell anyone. I went home after 8 days in hospital, I still had to take the diuretics.. just incase. My scar looks much bigger now, they cut over the first scar, but i don't mind because I'll be able to brag about it to my friends when I'm older.

Here are some pictures explaining what an asd and vsd are.

Sunday, December 25, 2005

Nonna, Nonno and Elisa come for Christmas

We had such fun at Christmas. I loved staring at the lights on the christmas tree. Nonna, Nonno and Elisa played with me all the time and spoilt me rotten. Mommy cooked an english dinner for them, but i didn't have any because i'm still being fed by tube. I don't like food going anywhere near my mouth, i find it too difficult so i reject it, i turn away or shut my mouth. I know it stresses everyone out but i can't help it. I've lost my confidence, so it'll take some time.

Nonna played with me constantly. She makes me smile and laugh, I love all the attention. I miss them when they're gone. They live in italy, hope i see them again soon.

Saturday, October 01, 2005

Mommy fixed my ears

When i was born i had floppy ears. My right ear didn't have a rim and my left ear was pointy. Mommy found earbuddies on line, they are splints that fit into the ear and they're taped there for as long as your age. I was 3 months old so had to wear them for 3 months. I didn't feel them at all, they are like magic... my ears look normal now!

Wednesday, September 14, 2005

Pulmonary Artery Banding

I love being at home, it's cosy and safe and I don't have doctors and nurses prodding and poking me all the time. Mommy and daddy are still feeding me through the tube, I can only manage to drink about 30ml's at a time, not nearly enough! I sweat and get all breathless so I'm 'topped' up with the rest of the milk, I like going to sleep when they do this, I can feel my tummy getting nice and full. I've been going to lots and lots of appointments. I know when I'm in hospital because I recognise the smell. I'm not thriving so well at the moment so my cardiologist said I should have pulmonary artery banding. This is a band that they put on my pulmonary artery, to restrict the amount of oxygenated blood that goes into my lungs. It'll help me put on weight and I shouldn't be as breathless. Sounds good doesn't it! But think mommy and daddy are a bit worried.

I'm 2 month's old now and ready for my first major surgery. We all went to Great Ormond Street hospital. I had to have lots of blood tests in preparation for the op. They really struggled taking blood from me, they pricked my heal about 5 times, it was sore but I didn't cry. Mommy and daddy were given a room to stay right near the hospital so they could visit me in PICU whenever they wanted, it was nice knowing they were so close. They had a chat with the surgeon who explained what they'd do to me, they had to sign a consent form... not nice to do but if I was to feel better they knew they had to do it. A nurse came to fetch us, she took us to the room where I would have my anaesthetic. I felt so small on the big bed. Mommy and daddy were allowed to stay with me until I fell asleep. They put a mask over my nose, it smelt really odd..

I woke up properly about 24 hours later. I was heavily sedated and on morphine. I had wires and tubes all over me and my eyes were really puffy, I couldn't really open them. I didn't like it in there but the nice nurses kept me comfortable. Mommy and daddy sat with me all the time, talking to me and stroking my forehead. The next day I went to the Ladybird ward. I was glad to be out of PICU, it meant I was getting better. Mommy was allowed to stay with me too, she had a camp bed next to mine. I met another little boy in there called Max, he had open heart surgery, he was 2.. much older than me.

I was allowed home a week later. I was given furosemide and spironolactone to take, they are diuretics and they help to drain excess fluids from my system. They make me wee a lot. I wasn't allowed to get my scar wet for 3 weeks so we had to be really careful at bath times. I'm still feeling quite breathless though and still sweat when I try and feed, wonder if they did the band tight enough?

Monday, July 18, 2005

The first time I met mommy and daddy

Today's my birthday, i weighed in at 3.3kg's... mommy had an emergency cesaerean because I was too tired and my heart couldn't handle the long labour. I tried breast feeding but couldn't do it, I couldn't work out how to suck, swallow and breathe all at the same time, it was too much hard work! The doctors started getting concerned so I was taken to special care where they fed me with a nasogastric tube, it's a tube that goes in through the nose all the way down to my tummy. Mommy kept trying to breast feed me but i just couldn't cope, I tried so hard though. my paediatrician did a scan on my body, he wanted to see if everything was ok. He'd noticed i looked a bit different and thought I could have a syndrome. He did a scan on my heart and saw that i had some holes in the atrium and ventricles. Mommy and daddy were very worried but he assured them that my broken heart could be fixed. We all got in an ambulance and went to Great Ormond Street hospital for an echo, it's a big machine that shows my heart pumping on the screen. That's when I met Rob for the first time, he is my cardiologist. He didn't want to operate on me just yet, I was still too little, they wanted me to be at least 5kg's... but I wasn't in any danger so we were allowed to go back to the Whittington hospital.

I'd been there about a week when we had to come all the way back to Great Ormond Street for genetic testing. There was a lady there called Clare who had a good look at me, she didn't think i had a syndrome but wanted to test me for a chromosomal abnormality. Mommy and daddy didn't know anything about chromosomal abnormalities, but they learnt very fast! We had to wait about 5 days for the results, it was a long wait. Mommy and daddy couldn't stay with me in special care, but they used to visit all the time, feed me, change my nappies and give me baths and cuddles. Clare from Great Ormond Street called and told mommy that they'd found an abnormality in chromosome 10. They went to see her but I had to stay in the hospital. They took blood from them to make sure that it wasn't genetic, it wasn't in the end... it's just nature's way of making me truly unique. There aren't many people who have the same abnormality as me, and even if there were it wouldn't really help me much. I was in hospital for 2 weeks altogether, mommy and daddy asked if they could take me home, they were happy to feed me by tube themselves and plus we'd all had enough of the hospital. Mommy didn't like the food much.