Caring for a child with an illness can be overwhelming and seem unmanageable at times. You may have experienced a range of emotions when your child was first diagnosed with a serious illness. Now that your child has been recommended for a possible liver transplant, this information may likely create additional concerns and anxiety.

The waiting period for the donor liver, whether it is a few weeks or several months, can seem extremely wearisome and can create a sense of fear. When your child is on the waiting list for only a few weeks, you may think you didn't have enough time to prepare. On the other hand, if your child has waited for several months, your concerns and anxiety may increase as your child's illness progresses.

Often, worrying can stem from a lack of knowledge or not knowing what to anticipate. You are not alone. These feelings and concerns are appropriate for what you are experiencing, given your child's illness.

There are things you can do to help redirect your worrying into something productive. You can refocus some of your anxiety and strengthen your ability to cope with the following tips:

1. Get to know your team. The interdisciplinary liver transplant team usually consists of the Pediatric Gastroenterologist, Surgeon, Nurse Coordinator and Social Worker. You may also interact with a Child Life Specialist, Dietitian, Psychologist, Chaplain, Physical Therapist, Pharmacist, and Nursing Staff. Talk with the members of your liver transplant team and identify each of their roles. Each person on the team has distinctive knowledge and information, which will be helpful throughout your child's transplant process.

2. Get to know your transplant center. Request a tour of the medical facility to help address questions you or your child may have in preparing for future hospitalizations. What do the rooms and intensive care units look like? Where will my child have his/her exams? Where can I get something to eat? Where can family members sleep? Where can we take a shower? Find out about resources available at the hospital and the neighboring area. It is often helpful to contact the Pediatric Liver Transplant Social Worker prior to your initial admission to the hospital/transplant center or evaluation process to help you identify these resources.

3. Educate yourself about your child's illness. Learn about the functions of the liver. What caused your child's liver failure (if known)? What are the symptoms to look out for? What are the medical or surgical options to help your child as his/her condition progresses?

4. Learn about the transplantation procedures. What are the pre- and post-transplantation procedures? What kinds of tests will be involved? How does my child get on the waiting list? How long is the wait? What is a PELD score? How will we be contacted? How long will the hospitalization be? How often will we go to clinic? How many medications will my child be taking? Who do we contact in case of an emergency? Your transplant team will welcome your questions and are there as a resource to you.

5. Get organized. Develop a "care notebook" as a reference/resource guide. If possible, request information in writing. Have a list of all the contact people at your transplant center in one place or sort all your business cards in a sleeve. Take notes and write down questions for the team. There is a great deal of information and much to learn. It can be easy to get overwhelmed. It is simple to overlook or fail to remember some of the details. Keep a calendar of appointments, lab schedules, and dates when procedures were performed. Keep copies of all medical consents for test/procedures.

6. Get support. Emotional support is vital during this time. Your family and friends can be excellent support givers and may also be able to handle day-to-day activities, such as childcare, house sitting, getting mail, etc. Your employers may also be supportive during this difficult period and may be able to grant you FMLA Leave (Family Medical Leave Act) to be with your child or for visitation. You may also consider contacting other parents who have experienced something similar. Ask your social worker for information on support groups or resources such as C.L.A.S.S.

Explore areas where you and your family may need more assistance such as help regarding disciplining your child, school issues, appropriate social activities, sibling support or financial issues. Research community agencies or resources, which may be helpful. Parents may also face marital and financial problems. Therefore, it is important to consider asking for and accepting assistance during this time.

7. Take care of yourself. Make sure you eat well, sleep regularly and remember to take some time for yourself. Good physical and emotional care during this time will help you care for your child more effectively. This will also permit you to fully enjoy your child and your family. If you notice you are having difficulty coping, you may consider talking with a professional about your physical and emotional health during this period.

No matter what your situation is, support for your child and getting support for yourself is essential. Enjoy your child and your family every moment. Facing a serious illness together can be enriching as well as stressful and allows families to appreciate how precious and valuable life is.

Betty Kim-Liu, MSW, is the Clinical Social Worker for the Pediatric Liver Transplant and Pediatric Small Bowel Transplant Team at Mattel Children's Hospital at UCLA Medical Center.