As the parent, you are the most important member of the transplant team once your child is on the waiting list. The transplant team depends on the family to help provide the best healthcare possible. If there are ever any changes to your child’s medical condition, please contact your transplant team immediately. Parents are also responsible for:
Transportation: You may receive a call for transplant at any time — night or day! You must be able to reach the hospital within an hour.
Pager: The transplant team will issue you a pager to so they can contact you when an organ offer has been made for your child. You must carry the pager at all times. The pager should be checked daily and should only be utilized for the team to contact you.
Adherence: The transplant team will discuss the plan that will best meet your child's health needs. It is your responsibility to make certain you are following your child's health care plan. The plan includes instructions for medicines, diet, physical therapy/exercise, immunizations and clinic visits.
Communication: It is very important that the transplant team be able to contact you at all times. Please keep phone numbers up to date. This includes work numbers, home numbers, cell phone numbers, neighbors, family members and other contact numbers. You must be able to call us at any time and should carry the transplant center's numbers with you.
Vaccinations: Please check with your doctor or nurse before your child gets any vaccines. Your child should not receive live vaccines while they are on the transplant waiting list or after transplant. We can give you a full list of approved vaccines and a timeline for when your child will need them. All transplant patients are expected to receive their yearly flu shots. Flu shots are strongly encouraged for all family members as well. Others living in the home, including siblings, can receive the MMR, the MMRV and the Varivax vaccines, but should avoid the flu mist vaccine.
Examples of live vaccines are:
- MMR (Measles/Mumps/Rubella)
- Chickenpox (Varicella/Chickenpox)
- MMRV (Measles/Mumps/Rubella/Varicella)
Physical Therapy: Physical exercise is a critical component pre- and post-transplant. It is essential for your child to continue with the exercise plan developed by your physical therapist and exercise physiologist. Your child will have regularly scheduled PT appointments and will be given homework by the physical therapists to do between visits.
Labs: We want to monitor any medical changes your child may be experiencing. In addition to regular lab tests and blood work, we will also show you how to monitor your child’s vital signs at home.
Nutrition: Good nutrition is important for growing and staying healthy. It is also important to help your child’s body deal with the transplant and recover more quickly. It is important that you understand and help your child with their nutritional goals. During the pre-transplant evaluation, a dietitian will monitor growth and overall nutritional health. He or she might ask you to write down what your child eats over several days. The dietitian will be able to help guide you and the team in making a nutritional care plan for your child. Some children with lung disease:
- Need more vitamins and minerals
- Require more calories than usual to help them grow
- Need tube feedings to help them gain weight and grow