When Your Teenager Needs Heart Surgery, by Leslie

Excerpt from Cardiac Kids Parents’ Resource Guide and Journal (An abridged version for the website)

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General Tips For Teenagers

• Make goals! Make goals for before surgery, after surgery and after a hospital trip.
• Give yourself something to look forward to. Everyday goals are good to have, too.
• Always have an agenda (whether in the hospital or recovering at home). Make a daily schedule keeping in mind that it will change from day to day even in the hospital (scheduling television programs is not a schedule).
• Be assertive. If you have questions, ask them. No question is a question not worth asking. Remember, this is your body and you will know what is going on before any test will tell you. Speak up! The more you know about your heart, the more you will know when there needs to be something done.

Hospital Tips For Teenagers

• If you happen to get stuck in the hospital for a long period of time, make the room yours. Bring your own PJ’s, pictures, movies, music, pillow, slippers, etc. Take daily outings from your room. Eat your meals in different places, read books in different places, etc.

• Make friends with the nurses; they can give you the inside scoop.

• Know the hospital and what it has to offer. Restaurant deliveries, free food, cafeteria hours, on-floor kitchens, storing personal food, outside decks, playrooms, washer/dryers, heat and air to the rooms, Internet connection sites, library, bed accommodations (parents/patients), showers. Know the area surrounding the hospital.

• Hot wet cloths around the arm always open up the veins to help IV medicine go into the body with little burning.

• Lamaze breathing techniques work with all kinds of pain.

• The term "hospital-itis" comes from those patients that have been in the hospital for a long period of time and sleep does not come easily to them. Use the comforts of home to sleep: special stuffed toy, blanket, night light, warm tea, eye cover (that is a big one with hospital lights), music.

• Exercise every day, move your legs, arms, body to the best that it can move. Don’t stay in bed all day – get up and move around. If you are unable to walk, there are wagons and wheel chairs to get you around. Fresh air will always make anyone feel better.

• If you are not physically comfortable, find a way to get there. Don’t be afraid to ask for more pillows, blankets, foam pads, and my personal favorite, little blue doughnuts (blue foam pads shaped as doughnuts) that fit almost anywhere. I like them while I am sitting on my hips and bottom. They are especially perfect for the Cath Lab under your hips so that when the doctors are working, your body does not get pushed into the hard cold table.

• In the Cath Lab, don’t be afraid to speak up. If you are feeling what they are doing and you are uncomfortable, tell them to stop or slow down and that you need a break.

Managing School

• In school carry only what your sternum can handle in a backpack. Other options include a roller backpack, and a set of books in the classroom and a set at home so that you don’t have to carry books from school to home.

• On the first day of school, your parents should talk to the teacher about your needs. Let the child also be in the meeting and let him or her communicate what he or she needs as a student to a teacher as well as peers. My parents made me do presentations to all of my classmates to explain to them why I am smaller, slower, and why I was blue all the time.

• Teasing is tough, so let your children educate their classmates about their heart and why they are different from others.

Tips for Parents About Communicating with Your Teenager

• Kids are smart, and they know when something is up. Don’t lie to your kids; if something is going to hurt, tell them.

• If you don’t have an answer to a question, tell them you don’t know and that you will ask a doctor together.

• Don’t hide what really is going on. They already know – communicate. Educate together as a family. Let siblings in on the learning too.

• Teens are less likely to feel rebellious if they are educated about their condition and if they are in charge of their own healthcare. Make sure that they completely understand their heart disorder, their surgeries, their treatments, and the purpose of all their medications.

Staying Sane

• Meltdowns are extremely important and are needed for coping with the situation. Let your children cry, get angry, and let the frustration out. Let them go at it until they feel better; then sit and talk about the feelings that they just experienced. Always ask if there are any new questions they may have. Comfort that meltdown by letting your child explain his or her frustrations to a caretaker who is at the hospital, i.e. coordinator, floor nurse, M.D., or therapist.

• After a good meltdown, do something fun. Make an outing if you are not in the hospital. If you are in the hospital, get creative and find something enjoyable: rent your child’s favorite movie or video game so that his or her mind is off the crisis for a few moments.

• If your child wants or needs extra counseling, make sure that your child likes and trusts the counselor. The counselor needs to be someone your child can relate to.

• Ask other people that have gone through the same stuff if they can be a support for you since they have been there and know how you feel. Get to know the other parents and families for support.

• Make the best of every day!

One More Thing…!

• Sitting and standing up straight will help fuse the sternum faster and heal together stronger. Remember to stretch. Keep sternum protected from weather; cold weather can hurt the bones and can feel like arthritis.

• Continue using "the heart pillow" until able to sneeze without pain. The pillow is always good between you and the seat belt of the car (helps with healing scabs if they are exposed).

• Always check your hospital bill; sometimes there are mistakes. For me I know that I do not use band aids, but we were charged for them. Also verify your insurance reports and bills.
• Bring your own underwear to the hospital! As soon as the Foley catheter is out, having your own underwear is nice.