Hi! My name is Kailin!
I am 17 years old, and I was born with a congenital heart defect. It sounds scary, but it basically means that my heart just wasn’t formed correctly when it was time for me to be born. Some babies are born with different heart defects that cause problems right away. My problem took a little longer to be noticed. My heart problem was called an Atrial Septal Defect, ASD for short. Simply, I had hole in my heart, and the hole was making my heart work harder. Unless my heart got fixed, I would never be able to grow up to be healthy and strong. When I was four and a half years old, it was time to fix my heart. My doctors needed to close the hole in my heart in a special operation called open heart surgery. So my mom, dad, and I packed our suitcases and went off to the hospital to have my operation.
My hospital arrival
The first day I arrived at the hospital was a very busy day. First, my mom, dad and I went to the Admissions Office to let them know I was there. They were very happy to see me. Mom and Dad took care of some hospital business, and I got a special bracelet to wear with my name on it. To keep me company, I brought along Lamby, my stuffed animal friend since the day I was born. Lamby even got to wear a hospital bracelet of her very own too, although she preferred to wear it as a necklace.
Getting tests
The rest of my day I traveled around the hospital to have special tests done to check my heart. The first stop was to see a lab technician who took some blood from my arm with a needle. It hurt a little but not for long. The second stop was to have my picture taken by a special camera took a picture of my chest and my heart and lungs inside. It was called an x ray and it didn’t hurt at all. The next stop was to have a test called an electrocardiogram, sometimes called an EKG or an ECG. That test records the electrical activity of the heart. It can also show if parts of the heart are too large or overworked. I was used to having that kind of test at the doctor’s office. I didn’t mind those sticky EKG stickers. The last test I had that day was an echocardiogram. An echocardiogram looks at the size, shape and motion of the heart using sound waves. I had echocardiograms before, but this one was the biggest yet. The technician kept the room very dark so the doctors could watch the monitor screen that showed my heart. The gel she put on my chest was cold at first and I really didn’t like it. The test seemed to last a very long time. It really didn’t hurt, but I was getting tired of the transducer being pressed on my chest. It lasted over an hour. The doctors pointed out the hole in my heart so my Mom and Dad could see. I knew it was a very important test so I tried very hard to be patient.
The hospital floor
When the testing was finally over, I was ready to go to my hospital room. My hospital room was nice with a bright, sunny window. It had two big beds in it, so you could have a roommate. There was a curtain between the two beds that moved back and forth so you could say hi to each other. The beds were a lot of fun. They moved up and down when you pushed a button. Every room had a bathroom and two televisions. There were cabinets to put your things away, a rocking chair and a chair that turned into a bed. It was a little like a hotel room, except for all the hospital stuff on the wall. Nurses and doctors stopped by to talk to us. They were very friendly and told us they were always there to answer questions, especially my questions. One of the nurses took my blood pressure with a special cuff that fit around my arm. Then she took my temperature and checked my heart and lungs with her stethoscope. The surgeons who would perform my operation talked to us about my heart surgery. I really liked the doctors and I was glad they would help me get better. I could tell mom and dad thought so too. Another doctor called an anesthesiologist came to visit me. He was the doctor who would give me special medicine to make me sleep during my operation so I wouldn’t feel a thing. Before long, it was time to take the tour of my hospital floor. All the children there had heart problems like me. There was a large map on the wall with red pegs to mark the different places children traveled from to come to this hospital. There were tons of red pegs from all over the country and from other countries too. I stopped by the nurse’s station to say hello. They told me about the special snack kitchen and the playroom. There were many toys and games to play with and all the furniture was kid size in the playroom. The playroom’s big rule was that it was for fun only. When the doctors and nurses needed to do tests or checkups, the playroom was off limits. All the children loved the playroom.
The night before my operation
When it was late my dad left to stay at a nearby hotel the night before my surgery. Only one parent could stay in my room overnight and my mom really wanted to stay. The nurses gave her linens and a pillow to make up the pull out bed that was really a chair. I was glad my mom was there to keep me company. She liked to stay up late like me. That night my nurse showed me her little doll made of muslin. The doll was very plain and it looked homemade. She talked about my operation and showed me where my incision would be on the doll’s chest using a marker. She told me that I would have IVs and tubes for a little while. She drew those too. I really did not want to think about that doll. So my mom and I took a walk up and down the hallway instead. I was disappointed to find the playroom closed. The hospital seemed very different at night. The lights were dim like nightlights and it was very quiet. Sometimes you could hear the nurses talking in whispers. When we got back to my room, my mom wanted to talk about the doll again. She told me that to fix the boo boo in my heart, the doctors would have to make an incision, a boo boo on the outside of my chest so they could reach my heart. Then that boo boo on my chest would heal and get better too. A special heart lung machine would help my heart do its job when it was being fixed. The IVs and tubes were there to help my body heal after surgery. After a few days, I wouldn’t need them anymore. The IVs or intravenous lines would give my body special things I needed like medicines and nourishing fluids. The tubes would help my body drain the fluids that my body didn’t need. I would even have a tube to go to the bathroom until I was feeling well enough to get up and walk. I think I was worried about that tube the most. My mom said that the nurses in the Cardiac Intensive Care Unit would take good care of me after my operation. Other children were there right now, even babies, who were healing from their heart operations. They had IVs and tubes too. The nurses would use a monitor that made a beeping noise and had a funny, wavy line to check my heartbeats. Every child had one. I sat in my mom’s lap for a while as she held the doll. I felt bad for the little doll. I don’t think she liked those marks on her. I wrapped her in a blanket so she would feel better. My mom thought we should get some sleep, but I really don’t think she was tired either. She kissed me goodnight and tucked me in bed. I woke up in the middle of the night and climbed over to my Mom who was finally asleep. In the morning I was curled all around her when we both opened our eyes. The morning nurse looked surprised to see me there, but my Mom just smiled and gave me a hug.
My operation
I couldn’t have breakfast that morning because I couldn’t eat or drink anything before my operation. I really didn’t feel very hungry any way. My dad arrived in my room very early, and I was happy to see him. We had to pack our suitcases again and leave them in a special room near the nurses’ station. After my surgery I would be staying in the CICU, the Cardiac Intensive Care Unit for a few days. My Mom and Dad would stay in the parents’ dorm with other parents who had children in the CICU. When I felt better I would come back to a new room on the cardiac hospital floor for the rest of my hospital stay.
The pre op room had a lot more beds than my room. There were curtains surrounding each bed. A nurse checked my vital signs: my blood pressure, my heart rate, my respiratory rate, and my temperature. My dad was being silly and telling me jokes. One by one doctors and nurses in pajama scrub suits appeared at my bed. They were smiling and wanted to know if we were having a party because there was so much giggling. They were the surgeons and surgical nurses that were doing my operation. They all came to greet me. The anesthesiologist who came to see me the day before was there too. He asked me if I liked strawberry, watermelon or bubble gum the best. I got to sniff little bottles of each. I chose bubble gum. He had a little mask for me to try on and said that he could make it smell like bubble gum. Everyone else wanted to smell it, too.
When it was time to go into the operating room, the doctors said that my mom or dad could come too. We decided that my dad could go since my mom got to sleep over. The really funny part was seeing my dad get into his pajama scrub suit. I gave my mom a hug and a kiss. She said that she would see me very soon.
In the operating room, my doctor gave me a little mask to breathe into just like the one I tried on before. It was bubble gum. I remember sitting on my dad’s lap. Everyone was going to count backwards from one hundred with me. I remember hearing 100, 99, 98 97…
Feeling better and better
During my stay, I would have more blood tests, x rays, EKGs, and Echocardiograms. I didn’t have any more IVs or tubes, but I did have wires connected to me with stickers. That made it easier to have my heart monitored at any time. It didn’t hurt but it was a little tricky getting around. To keep my lungs clear of fluids, the nurses gave me a breathing tool called an incentive deep breathing exercises. I thought it was a toy at first. If I blew into the tube with enough force, I could make the three plastic balls float to the top of their chambers. It was harder than it looked. I liked the exerciser a whole lot better than the physical therapy. Each day I was in the hospital I felt better and better. I enjoyed going to the playroom again. It was fun playing with the other children. I also liked picking out my meals and visiting the snack kitchen. It was even open at night. I loved getting ice cups and juice whenever I wanted. Before I could leave the cardiac floor, I played games and watched TV in bed. The special shows with singers and puppets, being performed in the entertainment area of the hospital, were on TV for all the children who had to stay in bed. When I was stronger, I got to see the shows in person. I traveled around the hospital in a wheelchair. The hospital had a lot of fun things to see, especially in the big lobby and gift shop.
Waking up after the operation
The next thing I remember was waking up in the recovery room. My heart operation was over. A nurse was by my bedside asking me if I would like some ice chips. I dosed off again and woke up in the Cardiac Intensive Care Unit. I was lying on my back and it was difficult to move around. What happened the next couple of days was hard to remember, but my mom and dad later helped me put the pieces together. Little by little I noticed more things around me. Many doctors and nurses were moving about. I heard voices and the beeping sound of the heart monitor. I remember being really glad to see my mom and dad by my bed, although they could only stay a short time so I could rest. My mom and dad waited in the Parents Room while I slept. My mom told me later that she liked being with the other parents. She said that it was good to talk to other moms and dads who had children with heart problems, and that the other parents helped her feel lucky rather than feeling sorry.
Getting stronger
I started to feel a little stronger. I was getting used to the IVs and tubes. The doctors were concerned about my lungs though. It was important to keep my lungs clear of fluids. A technician came by with a portable x ray machine to take my picture. The nurses tapped on my back to help clear my lungs. That was physical therapy. I didn’t like it but it needed to be done. It was the first time I started to cry since I got to the hospital. The doctors checked my blood too. Sometimes children who have heart surgery need extra blood to make their own blood stronger. Some of my family and friends donated blood the day before I went into the hospital. The nurses had blood ready for me but the doctors wanted to try iron supplements first. The iron was helping my blood so the donated blood went to the Blood Bank for other children in need. One by one my IVs and tubes were removed when it was time for me to leave the CICU. The doctors felt I was ready to go back to my hospital room. Later I asked my Mom when I was getting that yucky “bathroom” tube. I was surprised when she told me that the tube was already gone. I didn’t remember a thing about it. Back in my hospital room, I was feeling tired. I didn’t even want to go to the playroom. The nurses said that I might be a little cranky. My body needed more time and rest to feel better. It was important to stay in the hospital until my heart was much stronger. The nurses gave me medicine when I felt pain. It was really hard to turn over in bed. I had to have help getting in and out of bed too. The incision on my chest was slowly healing. When I first saw it, it surprised and frightened me. My mom quickly reminded me that this boo boo would get better too.
Going home
The day finally came when I could go home. I missed my sister and my Grandma and Grandpa, and I knew they missed me too. Before I was discharged from the hospital, my doctors examined me to make sure I was ready. I would see my cardiologist soon after I went home to check my progress. I knew there would be more heart tests, but that was OK. The nurses gave my mom and dad instructions so I could continue getting better and better. I met a lot of new friends during my hospital stay. Some were the children and their families, others were all the nurses and doctors. I would always remember how kind the nurses and doctors were and how much they helped me. Before I left the hospital, I asked my mom if my heart was as good as new. She told me it was better than new… and it was!
Reflections
Many years have passed since my heart surgery. I am seventeen years old now. I still have regular heart tests and checkups with my cardiologist. Over the past years, I have gained a better understanding of what I really experienced that July when I was four and a half years old. I was given a chance to grow up healthy and strong. That was quite a marvelous gift. Many things have changed with time since my heart operation. There are many wonderful programs and support groups to help children and their families prepare for their hospital stay and surgery. It is important to remember that a child’s heart problems affect the whole family. So when a child’s heart needs to be fixed, Mom and Dad have broken hearts too. They have broken hearts of a different kind. What parents want most is to see their child happy and well. When their child’s heart is mended, their hearts feel better too. Although my scar on my chest has faded over the years, people still ask about it. When I tell them that I had open heart surgery when I was little, they looked shocked and even scared… but that’s all right. My mom once told me that most people have to wait a lifetime to do something really remarkable…. something that important, it would change their life or the lives of those near to them. I only had to wait four and a half years.