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In the days following the transplant procedure at Cincinnati Children's, your child will stay in the Pediatric Intensive Care Unit (PICU). This allows us to closely monitor his or her recovery during a critical time. You can be with your child most of the day, but you cannot stay overnight in your child’s room. We offer parent sleep rooms in the PICU on a first-come, first-served basis. You will need to arrange for outside lodging in case you are unable to get a parent sleep room.
After your child is stable, we will move him or her to a hospital ward where the nursing staff specializes in caring for children after a liver transplant. Our goals during this time are to get your child feeling well again, and to educate you and your family about caring for your child when you leave the hospital.
You will continue to see the members of the liver transplant team every day. The medical team will make rounds, examine your child and be available to discuss your child's health. During rounds, the team will make recommendations for care and discuss your child’s progress. The length of the recovery process varies from patient to patient, depending on the child’s health before the transplant.
Proper nutrition is important for your child’s healthy recovery from a liver transplant. A day or two after the transplant, your child will receive a special liquid food mixture through an intravenous catheter (IV). Once he or she resumes normal bowel function, your child will start with a diet of clear liquids and will move onto solid food when he or she can tolerate it. Infants put on special formula before transplant usually can be returned to regular formula. The transplant team may use a feeding tube to supplement your child’s diet until he or she can consume enough calories to fuel the recovery process.
Your primary job while your child is recovering is to learn about home transplant care. Your liver transplant coordinator will give you a home care education packet. It will explain the medications your child must take and how to care for your child's incision sites, central line (a long-term IV), external drains and feeding tube.
The nursing staff will be available at all times to answer questions and help you during this important time. The liver transplant coordinator will also work with you to set up a medication and task schedule.
When your child is ready to leave the hospital, the coordinator will schedule post-transplant clinic appointments and times for lab work.
The doctor who referred you to Cincinnati Children’s will help with your child’s care after you return home. The doctor will see your child frequently at first, to make sure recovery proceeds correctly. As time goes on, your doctor appointments will be spread out to monthly visits, then visits every three months.
If your child has a primary gastroenterologist (liver doctor) in your hometown, you need only to return to Cincinnati every three months to see the transplant liver doctor. However, you will need to return to Cincinnati more frequently if you do not have a primary gastroenterologist in your hometown, or if your child has complications or surgical issues. You will also need to keep in close contact with your child's primary care physician.
The first year after a transplant is usually the most difficult. Many changes take place in your family's life: lab tests, clinic visits and medications become a priority. The liver transplant team focuses on making sure your child’s new liver functions properly and monitors your child’s overall health.
One-year survival rates for children following liver transplants are close to 90 percent. However, complications (bile duct problems, infection, rejection) do sometimes arise after your child goes home. These complications could require readmission to Cincinnati Children's, a liver biopsy or other specialized testing.
Pay close attention to any symptoms your child develops after the transplant. Contact a liver care coordinator or your child’s primary care physician immediately if your child experiences any of these symptoms:
If your child experiences any of the following, contact a liver care coordinator during business hours:
To simplify the process of keeping up with bills and to allow you to focus on your child, Cincinnati Children's handles billing for transplant patients.
The transplant financial manager will take care of sending paperwork to your insurance providers and following up on reimbursement issues. You will receive a notice from your insurance provider indicating when a payment has been issued.
Changing insurance coverage or choosing COBRA coverage after the transplant could affect what costs are covered. We can help you evaluate how an insurance plan change will affect you and your family.
Katherine Haenlein battled with biliary atresia, received a liver transplant, and is now an active high school athlete.
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