If your child needs liver transplant surgery, you may have many questions. What will happen to your child? And how will your child’s surgery affect your family?
Your pediatric transplant coordinator gets you the answers you need. They’re a trusted expert by your side throughout the process. They’re a key member of your child’s liver transplant team.
What Does a Transplant Coordinator Do?
A pediatric transplant coordinator is a registered nurse caring for kids with organ transplants. Your coordinator is your guide to the liver transplant process. You’ll meet the coordinator when you first contact your liver transplant center.
Before Pediatric Liver Transplant
Your transplant coordinator talks with you about your child’s health history. They gather your health insurance information. The coordinator also talks with other transplant team members about your child’s health history.
Pediatric liver transplant evaluation
After learning about your child, your coordinator schedules their liver transplant evaluation. You’ll bring your child to many visits and talk with several doctors about their health. Your child will also have certain tests.
The transplant coordinator schedules all the visits and tests your child needs. They make sure all transplant team members have your child’s test results. Once the team reviews your child’s chart, your coordinator will tell you if they suggest a liver transplant.
Waiting for a donated liver
Your transplant coordinator adds your child’s name to the national waiting list. Your child’s health and need for a new liver determine their place in line.
Your transplant coordinator explains the options if your child qualifies. Depending on their health, your child may get a donated liver from a:
- Deceased donor: A person who donates their organs after they die.
- Living donor: A person who donates part of their liver. This is a living donor liver transplant.
Waiting for a new liver can be hard for you and your family. You must be ready to come to the transplant center at any time. You may also need to go to the transplant center for visits and tests during the waiting period.
Your transplant coordinator helps you make travel plans if you live far away. They can also help you find a place to stay nearby.
If you have questions during the waiting period, call your transplant coordinator. You should also let them know right away if your child has any new symptoms.
Preparing for life after liver transplant
Before surgery, your transplant coordinator helps you know what to expect. They connect you with transplant team members who teach you about:
- Anti-rejection drugs that your child will take to help their body accept the new liver.
- Avoiding infection after liver transplant.
- Spotting signs of organ rejection and what to do if you see these signs.
- Supporting your child’s liver health through nutrition.
When It’s Time for Liver Transplant Surgery
When a liver becomes available for your child, your transplant coordinator contacts you. They make sure everything is ready at the hospital when you get there.
Preparing for surgery
Your transplant coordinator makes sure your child gets any tests or exams they need before surgery. They have you talk to a social worker who makes plans so you can stay near your child during and after surgery.
Surgery day
Your transplant coordinator stays in touch during your child’s surgery. They let you know what to expect and give you updates.
After surgery, your child goes to the pediatric intensive care unit. When doctors say your child is ready, they move to the liver transplant unit. Your coordinator answers your questions and makes sure you know about your child’s status.
After Liver Transplant Surgery
There’s a lot to know about life and long-term care after surgery. Your transplant coordinator helps you get ready. You’ll learn to:
- Care for your child at home.
- Create and manage your child’s medicine schedule.
- Manage how you and your family feel.
You’ll stay in touch with your transplant coordinator after surgery. They will support you and your child after you go home. Your coordinator helps you:
- Talk with your child’s regular doctor.
- Feel confident in caring for your child after surgery.
- Manage your child’s at-home care routine.
Reach out to your coordinator if you have concerns. Emergency support from a transplant coordinator is typically available 24 hours a day.
Support for You And Your Family
Transplant coordinators make sure your child and your family have what you need during the process. They connect you with other transplant team members who can help with:
- Financial help.
- Managing stress and uncertainty.
- Spiritual matters.
- Support groups for kids and parents.
How To Work With Your Pediatric Transplant Coordinator
You and your pediatric transplant coordinator share a vital goal. You both want a successful surgery and a healthy life for your child. Here are some ways to have a good relationship with your pediatric liver transplant coordinator:
- Ask for what you need: Your coordinator tries to anticipate your needs, but they can’t know what you don’t tell them. You can ask any question or share any concerns with your coordinator.
- Find common ground: Being around health care workers in a hospital can be intimidating. Get to know your transplant coordinator and help them get to know you and your child.
- Keep an open mind: You’re used to minding your family’s needs and challenges. But liver transplant brings a whole new set of stresses. Be open to the help your coordinator suggests to manage these.
- Share what you know: Your coordinator is an expert in the liver transplant process. But you’re an expert in knowing your child. Help your coordinator learn about your child’s needs so they can best help them.
You and your pediatric transplant coordinator will work closely throughout the process. Together, you can help your child have the best possible health outcome.