Waiting for a donor organ is a stressful time for your child and family. Here are some steps you can follow to improve the situation.
Take Good Care of Your Child's Health
Make sure your child takes all medicines as prescribed. Tell your child's transplant nurse coordinator if any other medicines have been prescribed or changed.
Also, tell the coordinator if your child is hospitalized for any reason or if your child develops any new medical problems or infections, even if they can be treated out of the hospital.
Follow Diet and Exercise Guidelines
Your child's dietitian and physical therapist will help you set up a plan that will help your child maintain strength during the waiting period.
Update Insurance Information
Let your child's team know of any change in coverage.
Wait time can be a good time to get to know the transplant team and to become familiar with the care that your child will need after the transplant.
Meet Others or Join a Support Group
Some families find it helpful to meet other transplant patients and their families. If you would like to do this, your nurse coordinator can help make arrangements.
Stay in Touch with Family and Friends
Good company will take your minds off waiting and enhance your quality of life.
Depending on your insurance and your financial situation, this may be a good time to start
Even with insurance, there are many out-of-pocket costs associated with transplant such as some medications, insurance co-pays and deductibles. The transplant social worker can help you with ideas of how to start fundraising.
Take time to read with your child. Listen to music together. Watch funny movies. An older child can meditate or do light yoga. You can play games with a younger child. Focus on creating stress-free enjoyable times with your family.
Make Sure Your Child's Transplant Nurse Coordinator Can Reach You at All Times
You will receive a pager from the hospital if you are in an area that can be reached. Do not give out this pager number to friends or family.
The person who is able to bring your child to the hospital the quickest should carry the pager. You may also need a cell phone or answering machine.
Your transplant nurse coordinator may ask you not to travel far from your local area. Tell the coordinator about any changes to your address or phone number.
Know How You'll Get to the Hospital
You must be able to get to the hospital as soon as you are told that an organ is available. Make travel plans ahead of time.
Read About Hospital Services
Most patient rooms have a pull-out couch for one parent or legal guardian to sleep overnight. When your child is in the Pediatric Intensive Care Unit (PICU) right after surgery, one parent may use a separate sleeping room if one is available. Siblings may not spend the night in the hospital.
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Pack Your Bags
You must be ready to leave as soon as the call comes. Be sure to pack an extra 24-hour supply of your child's medicines. Include clothes for you and your child, and a few toys, books, videos and a favorite blanket - things that help pass time and soothe your child.