The hospitalization, treatment and recovery of a pediatric transplant patient will create stress for the entire family. The child will be inundated with tests, medications and daily procedures. He or she will also be very sick, and in some cases will not understand what is happening. Parents will be worried and exhausted. Siblings may feel ignored.
It helps to maintain as much of a normal family routine as possible. Consider bringing the child’s favorite toys, books, and clothes to the hospital. Put pictures of family and friends around the room.
Some hospitals have special programs involving arts and crafts, surprise visits by personalities or costumed characters, and special television programs for children. Be sure to ask the transplant social worker or child life specialist for special, age-appropriate activities for teens, such as video game tournaments.
It is common for children to temporarily regress during this time. They may become withdrawn, or unable to do tasks they had previously mastered. They may refuse to do necessary medical routines or become angry with parents and hospital personnel.
Allowing the child to make as many decisions as possible about his or her own care helps. For example, if the child needs to do mouth care, asking if he would like to do it before you read a book to him or after, gives him some sense of control over the situation.
Children should be prepared in advance for new medical procedures or medications. If possible, let the child handle the equipment that will be used during the procedure and practice on dolls. Letting the child see the room where the procedure will be done can help. If a medication may make the child feel dizzy or drowsy, alert her in advance so she is not scared when this side effect occurs.
Don't Ignore the Siblings
Be sure to pay attention to the patient's siblings at this time. They may feel ignored or neglected. Don't interpret this as selfishness on the sibling's part; it is a normal reaction.
During the child’s hospital stay, try to arrange for family members or friends to take siblings to after school activities, shop for clothes or school supplies or to social events. If one parent is away from home in order to care for the sick child, setting up times to talk with siblings about their activities and interests, rather than just focusing on what is happening with the patient, helps the siblings feel loved and valued.
Supersibs! is an organization that honors siblings of cancer patients throughout the treatment and recovery process. They have a number of programs to help children cope with of a sibling's illness, as well as tips on how to talk with children about a sibling's diagnosis and treatment.
Guard Against Stress on Your Marriage
Marital stress often occurs during this difficult time. Both parents are exhausted. A parent who remains home may be managing a job as well as the household duties normally handled by the spouse. The parent who is with the child at the hospital lives and breathes transplant 24/7 with all of its emotional ups and downs. Remember to share emotions and burdens with each other and greet those admissions with patience and understanding. If ever there was a time to put yourself in each other’s shoes, this is it. Seeking help from counselors can help.
Be the Advocate for Your Child
Communicating with the medical staff on your child’s behalf is important. You know your child best. Observing his care and notifying the medical team promptly whenever a problem arises is key. Communicating your concerns in a firm, but polite manner helps keeps the lines of communication open.
Take Care of Yourself
Finally, and this is very important, resist the temptation to tax yourself to exhaustion. Yes, it’s tempting to want to stay at the hospital with your child around the clock, but remember, you are a better advocate for your child if you are well rested and fed. Your health and well being is critical at this time and during the long recovery to follow.
Take breaks, trade off times at the hospital between you and your spouse or another family member. It is important to rest as much as possible. Don’t burn out in the short run. Many months of caring for your transplant child lie ahead of you. Recovery is a long process and your child will be better off in the long run if you stay healthy, alert and confident.
To learn what to expect in the months after transplant, click here.