These are stressful times. If you would like to contact a social worker, psychologist or child life specialist for information on community referrals or coping resources, you can call 312.227.4118 and leave a message. Your call will be returned within 24 hours, Monday through Friday. Non-urgent questions only. For emergencies, call 911.
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Soon after the liver transplant at Lurie Children’s is complete and the stress related to having a chronically or acutely ill child fades, your family should start to return to a more normal life. In a short time, your child should begin to participate in developmental, social, educational and recreational activities that are appropriate for their age.
Taking your child home with a new liver is exciting, but it can be very overwhelming because of all the medications and information you have been given.
You are ready to leave the hospital when you are able to do the following:
Demonstrate appropriate knowledge, measurement and administration of all medications
Verbalize signs and symptoms of rejection, infection and when to call your transplant nurse
Successfully complete 24-hours of independent care at the hospital
Your child will be seen twice weekly for about two weeks after discharge from the hospital. Your child then will have visits weekly for about one month, once every two weeks for about a month, then monthly for about six months, depending on how well they’re doing.
During each visit your child will be seen by a hepatologist (liver specialist), transplant nurse, transplant social worker, dietician and coordinator of any other service that may be necessary. Your transplant team will explain the results of every test. The social worker and other team members will continue to work with your family to address any adjustment issues and to help your child and family understand normal emotional/developmental concerns that arise in the transplant process. These may include:
Dealing with side effects from the medications
The need to take medications every day for life
Talking with peers about the transplant
Dealing with fears regarding medical procedures and tests
Resuming regular activities
When to Call the Transplant Team
Call the transplant team if your child exhibits:
A fever of 101.5F or 38.5C or a low grade fever(<101.5F) for more than 24 hours
Nausea or diarrhea
Any skin rash or itching
Sores, blisters or lumps in neck, armpits or groin area
Exposure to chicken pox
White patches in mouth (on tongue, inner cheeks or gums)
Sores or blisters on mouth, lips or gums
Yellow color change in white of eyes
Change in color of stool to black or clay color
Change in color of urine to brown or tea color
It is extremely important to report any changes in your child's condition to the transplant team. They will let you know which symptoms are important and need further treatment. Your child may need to be evaluated at Lurie Children's or by your local pediatrician.
During weekdays (8:30 a.m. - 5:30 p.m.), the liver transplant nurses should be contacted by calling 312.227.4030. During the night and on weekends, parents should call 312.227.4000 and ask for the attending gastroenterologist on call.