When Your School-Aged Child Needs Heart Surgery, by Julia

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

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Recognize Your Child's Personality and Build on It

My child, Olivia, was a very private, very aware 9-year old third-grader when her health declined significantly. Olivia had heart failure as a baby and never quite recovered. Medicine and visits to the cardiologist were facts of life to her. We always tried to make her life as normal and enjoyable as possible for her. Her life was so normal that other people had a hard time believing her heart was like an old person’s. She pushed herself academically and physically. The places where her cracks started to show were puzzling to most people - her lack of interest in social activities and her nervousness.

Before she got really sick, Olivia was always making up challenges for herself. She wanted to see if she could climb the highest tree in the park, walk the entire six-foot fence perimeter of our back yard, swim underwater for the width of the pool, swing high enough to touch the sky, ski the blue-blacks at our favorite ski resort. Even the weekend before she entered the hospital, she raced her sister around the yard. She almost collapsed, but she made it all the way around the yard.

Inevitably, she conquered the challenges, and moved on to something new and different. This is an important piece of her personality and of other children with chronic illnesses generally. We believe her spirit was one of the main reasons why she survived. She is a fighter, and she does not give up on herself. Cultivate this independent spirit in your child because that is what will get him or her through the tough stuff.

Keep Your Child Busy

The best part of the hospital was the playroom and the outside patio. We tried to go there at least once a day. Sometimes Olivia was in a wheelchair and seemed uninterested, but later she would tell me something to indicate how much she liked getting out of the room. Humor was definitely the best medicine.

We watched a lot of Spongebob Squarepants and The Fairly Odd Parents. It helped Olivia when I would watch it with her and then later we would crack each other up by repeating the funny lines at some appropriate or even inappropriate time. We gave each other the permission to be silly. Olivia hated the Shriner clowns and did not want them to come in her room. She created another sign for the door that read, "NO CLOWNS ALLOWED. THIS DOES NOT APPLY TO DOCTORS."

Art therapy also helped her tremendously. Olivia discovered all sorts of crafts to keep herself occupied and ignore the rest of the world. There is a craft cart that comes by, and there are crafts in the playroom. The Child Life Specialist can also find whatever you want. Olivia’s friends and family asked us what she wanted (people always want to give gifts) and we generally asked for arts and crafts supplies. Her room was overflowing with them, but at least we weren’t in any danger of running out.

Make It Your Child's Space

Decorating her room was very important to her, and to us. Changing from a generic hospital room into her room covered with cards and get-well posters and some of her artwork really made a significant difference. Stuffed animals threatened to take over the room, but Olivia wouldn’t have had it any other way. Even though she was nine and three-quarters, she had her teddy bear with her at all times. We also brought in her own pillow with her own pillowcase and a beautiful quilt that a friend made for her. Children need the comfort of familiar objects around them and something interesting or unique or beautiful to look at.

Put Your Child in Charge

This brings me to my next tip, which is to give your child as much control over his or her life as possible. Ask your child what he or she would like to eat, and try to get it. The nurses have secret stashes, or they can allow you to get meals at the hospital cafeteria and charge them to the room, and there are lots of restaurants and even a grocery store near the hospital. Give your child choices – TV now and playroom in the afternoon, or vice versa? Do you want a sponge bath or a tub bath? Red jello or blue jello? Usually a choice between two items is good enough, but then again, your child just wants a modicum of control to know that he or she is not a total baby.

You walk a fine line as a parent because your child must take the lead in many instances. Olivia was sometimes seemingly rude to nurses and doctors, but we realized that her rudeness erupted when an adult treated her like a baby or like an adult. Olivia wanted to be treated like a kid. It was important that the staff listened to her and did things as close to her way of doing things as possible. If they were cleaning her PICC line, she wanted them to remove all the Betadine and let all the alcohol dry. Olivia knew that it hurt less if the nurse did it that way. And if the nurse did it right, then that relieved Olivia’s stress and anxiety about the procedure.

We felt it was important for Olivia to talk to the doctors, the transplant coordinators, the nurses, and the therapists, etc. She developed a good sense of how to express to them all her aches and pains and wants and problems, without needing us as her constant mediators. She made some staff uncomfortable because she was so aware of what was going on, but again it gave her so much more control over her situation.

Olivia was scared about having to get a transplant, as were we all. But she felt it was important that when she had questions we answered them, but she did not want to dwell on it and talk about it all the time. We mostly let her take the lead on telling us what she wanted to talk about regarding the transplant. Sometimes she was worried about the scar she would have, so we discussed the scar with another transplant recipient. Mainly we tried not to overload her; we let her tell us what she wanted to know. We found that she was not as anxious about the procedure itself as we thought she might be. She just wanted to get it over with because she knew more than anyone else did that she had no other choice.

Rely on the Staff's Experience

Take advantage of the Child Life Specialist. Our specialist had a collection of large shells that she held up to Olivia’s ear during the procedure to have the PICC line inserted. The specialists have all sorts of tips and distraction techniques that they can pass along to you. Our specialist also worked with our younger daughter, Natalie, and made her feel important and useful; the specialist also explained to her all about a heart transplant using a doll. It relieved me from the duty of explaining something to Natalie that I was only recently coming to terms with.

We established a close bond with Olivia’s main nurse, Mary. I would highly recommend finding a staff member that you and your child relate to and cultivate that relationship. We are still close to Mary over a year and a half later. She is funny and warm and gentle, yet firm and opinionated too. She was willing to butt heads with Olivia over issues that we had given up on long ago. Mary made Olivia turn off the TV and do something else at least once a day. She also had a rule that Olivia had to get out of bed at least once a day and leave her room. Sometimes we only went as far as the end of the hall, but to Mary that was enough. We always made it to Beanie Baby Bingo though! Everyone always fussed over Olivia’s winnings, and it was the highlight of her week. She won the grand prize one week - an ice skating princess teddy bear complete with ice skates and tiara and wand.

Mary also had a rule that Olivia had to have a bath every other day. A tub bath was a huge drain on her energy, but the tub bath felt so good to her. She loved the warm water and the Johnson’s baby bath liquid soap. It was my job to give the bath, so it was a wonderful bonding time for us. Mary realized how important it was that I still be Olivia’s mom, and for my husband to be Olivia’s dad. A bath was the one time when it was permissible to lock the door and have privacy. Of course, I was there with Olivia, but I was kid close, not baby close. She liked having me wash her back and rinse her hair with warm water with the portable shower nozzle. She was always exhausted when we got back to the room, but on the other hand, she was able to take a good nap too.

The Transplant was the Easy Part

This whole experience brought us closer together as a family. We see Olivia’s transplant for the miracle that it is. We feel the responsibility of caring for her and providing her with the medicine that she will need for the rest of her life.

One of the hardest parts of this whole experience to me was how much I missed our other daughter, Natalie, through it all. The hospital does its best to include the whole family as best as it can. We called on everyone who volunteered to help with Natalie, and to be honest, she had some really fun adventures. But, after the transplant, my husband and I tried to make up for lost time and make sure that Natalie knew how special that she is to us and what an integral part of the family she is.

Our surgeon told us that the transplant itself was the easy part. It turned out that he was right. The hard part was the wait before and the worry after the transplant. But, the anxiety and the worry and the stress were all worth it because Olivia has her life back. Even she would tell you it was worth it. She leads a mostly normal life. We live each day as a new day and as a new opportunity.