CAMP MYSTIC

I loved camp this summer! I was in the tribe of the KIOWA (ke-o-wa).I had a lot of fun going horse back riding, swimming, drawing,golfing,drama,free swim, cheer leading,guitar,minnows.I didn't want to leave.I know next year I will have a lot of fun!

Getting ready for more camp!

Nothing big on my heart right now. That's good news! Yay! No surgery for a while, like a few more years or so. I hope I don't have to do any of those yucky tests again anytime soon. I'm getting ready to go to camp for FOUR weeks, but I'm not worried about my heart. I know it will be absolutely, positively fine. My mommy wants me to write longer blog posts, but I don't have time right now. See you after camp!

P.S. There are sugar ants crawling in our house, and we don't know why!

Camp Pump It Up

I went to Camp Pump it Up a few weeks ago. It's a camp for kids with heart problems. I met a friend there named Ainsley who has a seven-year-old boy's heart in her. She's also had cancer. I rode horses and canoed. It was fun. I had lots of fun activities. It was good being there with kids who have problems like me. Mine weren't nearly as bad! I can't wait to go next year! It's for a weekend. I didn't know anyone when I went. I was shy. Carson can go with me one day. The dance was fun. I only saw one girl dance with a boy. I was in cabin #9. It was the best cabin I think. I was too busy to miss my family. See ya later!

Today I had my stress test. They put sticky things on my chest to put cords on them. I have no idea what they do. Something about measuring my heart. I walked on a treadmill for 10 minutes. At the end, I had to run. I got tired and I started to cry. I feel fine now but I'm a little tired. Mommy took a bunch of pictures. Here they are.

Before it happened. I'm watching the TV.

I felt like crying!





I couldn't breathe!

This one is right when I was done. See how tired I am?

I'm about to get all the sticky things off of my chest.

Bye for now!

MRI TODAY

Have I said I HATE MRIs? I tried to make a break for it by asking my dad if I could stand up but he knew what I was going to try to do. It took 4 people to get my IV in. I hate MRIs a thousand times. I said"It stings" probably 30 times. I wonder if I snored. MRI medicines sting to death. My mom and dad said it was hard for me to wake up. Maybe I was so tired. I wonder if the medicine will react . If it does my teacher will find me fast asleep in class. I hope that happens. That would be awesome. I hope they took good pictures. I have a stress test on Monday. See you then! Goodbye.

Open-Heart Surgery

On May 6, 2003, I had open-heart surgery. They cut me open through my chest. When they did this, I couldn't go outside the house for two weeks before my surgery. They didn't want me to get sick. We don't know if I will have to do this the next time I have surgery. My eyes rolled into the back of my head. They thought it was a bad reaction to the medicine they gave me to put me to sleep. I didn't know this but my daddy just told me my body got all stiff. After that, I had to go to the brain doctor to see why I did this. I had to keep going to him to make sure nothing was wrong with my brain. Good thing nothing was wrong. My parents pray for my heart all the time. I was in the hospital for a week. I called it the hostipal. The pictures above are the man who did my surgery and my heart doctor, Dr. Rivenes. His name is Dr. McKenzie. They came to see me all the time in the hospital.

What is pulmonary atresia?

For a great picture of what pulmonary atresia looks like, click here. I was born with only 3 and a half chambers instead of 4. When I had open heart surgery I was only almost 2. The doctors cored out some muscle in my fourth chamber to make it bigger. (Mommy helped me write this part.) My pulmonary valve is really leaky now, so in my next surgery they're going to fix that. Pulmonary atresia is not contagious.You can't catch it from people who have it. I will have it my whole life, but we can control it. We don't know why I have it, but it's not so bad. I could have lots of other problems. I'm lucky that this is it.

How I'm Like Everyone Else

I am just like everyone else except I have a heart problem. I have 4 scars. I can run like everyone else. I can do active stuff. I don't like white milk. I like chocolate milk. I don't like surgery. I LOVE American Girl dolls. I love to watch TV. I love church. My heart doctor told me to stop what I'm doing and rest if I get tired. This is the only thing that makes me different. That picture is of me at the American Girl Place in Los Angeles. That's all I want to say because I'm on Spring Break and I want to play with my new stuff!

Next surgery

My next surgery will be a pulmonary valve replacement to get a pig or cow one. That is why there is pictures of cow and pigs. I wonder why human valves don't work as well? They will also work on my tricuspid valve. Those are two main valves in your heart. I will be out of school for a month. Yay! But boohoo I can not see my friends. Maybe they will go on a field trip to see me. We don't know when it will be but it might be soon.

The tests

I have to take a bunch of tests. One of them is the stress test on the treadmill. I look like a alien. I have things on my head and in my mouth while I run it is not fun , but I get to watch TV.

The other test is the MRI the doctors give me a shot it is never fun. I hate the MRI! They put me to sleep with the shot. It hurts so much! I get to miss school when I do this ,that is fun! The stress test measures how hard my heart works. The MRI takes pictures of my heart.

The Beginning of my Life

This blog was created entirely by my 8-year-old daughter Emma who has pulmonary atresia, a congenital heart disease. I am her mom and love her with all my life. I am typing what she is saying.

My name is Emma and I am 8-years-old. This is my story as best as I can retell it. God will take care of me (I know that!).

When I was born, I went into the NICU because I was turning blue. It was several hours before anyone knew what was wrong with me. On my second day of life, I had a heart catheterization and on my third day I had surgery to insert a BT shunt. While I was in the hospital, the doctors fed me through a tube. Gross - right? My brother doesn't have this - he's so lucky. On my tenth day, I left the cardiac ICU and went to the general cardiac floor. On day 11, I had a heart attack on the elevator with my mom. She was so scared but the doctors at Texas Childrens' Hospital helped me.

After the heart attack, I went back to cardiac ICU for 8 - 10 days. Poor me. I was 30 days old when I finally got to go home. It was September 5, 2001.

More later!