Tips While Waiting
Prepare to Go:
Since you may need to leave a moment’s notice, prepare yourself for the call.
For your child, pack loose fitting clothing, pajamas, slippers, underwear, and bathroom supplies.
Consider packing your child’s favorite book, toy, or blanket or other comforting items.
Older children may want headphones, a book, or small craft kits.
Caregiver or Parent: toiletries, comfortable clothing, and some form of entertainment to keep yourself occupied during the long hours sitting in the hospital room while your child is in surgery or procedures.
Prepare Travel Arrangements
Plan your travel arrangements in advance, especially if you live far away and will need air transport.
Get on with Life
Try to keep busy by doing normal things as much as possible.
Do daily activities of life, go to the park, take walks outside, have playdates with friends, and continue to engage in family time.
Consider finding support groups in your area while your child is waiting for transplant to help with the anxiety of the waiting process.
Keep your child’s health and spirits up:
Encourage your child to exercise daily, if able.
Keep your child social and visiting with friends.
Keeping your child healthy and strong before his or her transplant is essential for a successful operation.
Be sure to keep up on giving your child his or her medications and taking your child to his or her medical appointments as required.
Also make sure your child’s nutritional status is being maintained and he or she is not losing weight pre-transplant.
Stay in touch:
Make sure you keep your transplant coordinator updated at all times.
If your address or phone number changes, be sure to update your coordinator immediately to make sure if an organ donor becomes available that your child does not miss the opportunity.
Report any infections or medications changes.
Change in health status can affect the ability of your child to receive a transplant.