Being an advocate for your child

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Hospitals can be frightening places for children. Parents need to provide comfort, protection, and advocacy for their vulnerable child. To fulfill these roles, parents need to be present.

Most pediatric hospitals are quite aware of how much better children do if a parent is allowed to sleep in the room. Sometimes small couches convert into beds, or parents can use a cot provided by the hospital. If hospital policy requires the parent to leave, insist on staying. Geralyn Gaes tells a story in You Don't Have to Die about a confrontation at her local community hospital.

One night a nurse came into Jason's room and curtly informed me that I would have to leave, since it was past visiting hours. With my son pale and retching from chemotherapy, I was not about to go anywhere. Looking her in the eye, I said, "You can send security after me if you like, but I'm not leaving here." No one disturbed me again.

Of course, sometimes it isn't possible to stay with your child if you are a single parent or if both parents work full time. Many families have grandparents or close friends who stay with the hospitalized child when the parents cannot be present. Older children and teenagers may not want a parent in the room at night, but they may need an advocate there during the day just as much as the preschoolers.

Whenever my husband couldn't be at the hospital at bedtime, he would bring in homemade tapes of him reading bedtime stories. Our son would drift off to sleep hearing his daddy's voice.

We were always there with her in the hospital, and one of us was always with her for treatments. However, she did not want us going back with her into the examining room, so we respected those wishes. Her doctor was very kind in always coming out and talking to us. He showed her complete respect as a 15-year-old and also took time to meet our needs. She has always kept up with her own medical reports and concerns. Although her father and I have always been there with her and for her in the background, she has been much more knowledgeable about the whole cancer experience than we have in her treatments, medications, etc. She loves being in charge of her medical needs.

BEING AN ADVOCATE FOR YOUR CHILD

Brian was 12 and could have stayed alone, but we never left him for more than five minutes to run down the hall for coffee, bathroom, etc. Someone—my husband, me, a grandparent, an aunt or uncle—was always there. If we had needed them, church members and friends had also volunteered, as Kevin (the younger brother) was only 2 at the time. With my husband rotating days at work and the hospital, and me rotating home and hospital, somehow we managed. The shift usually changed mid-day, so we each got a half day at both. A caring employer is essential.

Also, Brian became very familiar with all his drugs, allergies, reactions, and doses. Several times he corrected the staff even before I could. We also had errors and near-errors, as I'm sure everyone does, but many fewer, I'm sure, because of the constant presence and watchful eyes. Operating room doctors and nurses accessed his line without first swabbing with alcohol. Someone wanted to give ibuprofen for fever. Non-oncology nurses were working the pediatric oncology floor and knew less than we did. Our hospital is now greatly improved, but things like this happen everywhere.

For some families, it is less stressful for all if they do not hover at the bedside. An oncologist made the following suggestion:

When people are subject to stress, some people cope by focusing on all the details. For these people, being there all the time reduces their stress level. In other words, they would be more stressed if they were at home or work because they would be worrying all the time. Other people cope with stress by blocking out the details and trying to make life normal. I think that you need to think about how your family can best cope with this process and make your decisions based on that. Have a family meeting to sort out these issues, and don't feel bad if you decide what is best for your family is different from what other people say you should do.

Whenever a family member cannot be present, children who are old enough should be taught to use the telephone. Tape a phone number nearby where a parent can be reached and have the child call if anyone tries to do procedures that are unexpected. The hospital staff should be informed that any changes in treatment (except emergencies) need to be authorized by a parent.

Having cancer strips children of control over their bodies. To help reverse this process, parents can take over most nursing care. Children may prefer parents to help them to the bathroom or to clean up diarrhea or vomit. Making the bed, keeping the room tidy, changing dressings, and giving back rubs helps your child feel more comfortable and lightens the burden on the nurses. However, some children and teens may feel better if the nurses provide these services. Parents should allow the child to express his needs, even if it feels like rejection.

I was embarrassed to have the nurse change the sheets when I had an accident in the bed. I couldn't help it when I was taking the Cytoxan, but I was still embarrassed.

Parents can also help out by checking for mistakes. People who work in hospitals are human, and they sometimes make errors. It helps to have a written copy of the protocol. If you weren't given one, ask. If your child is enrolled in a clinical trial, you should have the short roadmap that describes dates, drugs, and tests. However, you also have a right to get a copy of the full trial protocol if you would like one. For more information, see Chapter 4, Clinical Trials. Parents can be the last line of defense against mistakes.

Know every drug your child takes. Write down the name of the drug and the dosage. Watch that the name on the drug matches what YOU are expecting them to get, and ask if it isn't something you recognize. Watch that the name on the blood matches up with the child's name band. Watch everything.

Parents can help their child regain some control by encouraging choices whenever possible. Older children should be involved in discussions about their treatment, while younger children can decide when to take a bath, which arm to use for an IV, what to order for meals, what position for procedures, what clothes to wear, and how to decorate the room. Some children request a hug or a handshake after all treatments or procedures.

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