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for Your Child's Liver Transplant
It may be some time before you have your child's transplant surgery. While you wait, it is important to follow the steps listed below.
Take your child to the doctor regularly
Take your child for regular dental exams
Give your child the right foods to eat
Help your child to quit smoking
Be sure we know where to contact you
Plan for your transportation
Plan for you other children and pets
Plan where your family can stay
Plan what to bring to the hospital
Prepare your family and friends
Prepare yourself and your child emotionally
Problems to watch for while your child waits
Take your child to the doctor regularly
It is your job to schedule all your child's doctor visits. Your child will need to see a liver doctor (hepatologist) at least every three months. The doctor will assess your child's condition, order lab tests, adjust your child's medicines and tell you how often your child will need to have check-ups.
Your child will need to see your family doctor for general health care. Your child's doctors will write to each other to share the results of your child's exams and note any changes in your child's health.
To stay active on the transplant waiting list, your child will also need to have regular lab tests at your local clinic to determine his or her MELD or PELD score.
Please see your family doctor for the following tests and vaccines. Have your child's doctor send all test results to your transplant coordinator.
- Your child will need a Mantoux test to see if he or she has ever been exposed to tuberculosis (an infection that affects the lungs). This is given with a very small needle on the forearm. You must bring your child back to your clinic 48 hours after the test so your child's doctor can check the result. If your child has a reaction to this test (a raised red area on the skin), he or she will need to see an infectious disease specialist at the University of Minnesota Amplatz Children's Hospital.
- Your child will need to have pneumococcal vaccines (shots to prevent pneumonia), if he or she have not had one in the past five years. You will also need hepatitis A and B vaccines. Please keep a record of these and all shots your child receives.
- Once your child is on the transplant waiting list, it is very important that your child receive NO LIVE viral vaccines.
- Your child should get yearly flu shots.
Take your child for regular dental exams
All necessary dental work should be completed before your child's transplant. Your child should see the dentist every six months while waiting for the transplant.
Give your child the right foods to eat
Your child's liver disease may change the way that his or her body stores nutrients. For this reason:
- Your doctor may suggest special fat soluble vitamins and mineral supplements and/or special infant formulas for your child. Do not give your child any other vitamin, minerals or herbal products without first discussing them with your child's doctor. Some of these products may cause liver problems. Please tell your transplant coordinator if your child starts any new medicines, vitamins or herbal products.
- If your child has fluid retention (bloating or swelling), you may need to restrict your child's sodium (salt) intake. Avoid any foods that come out of a bottle, box, can or jar. Processed foods tend to be very high in sodium. Fresh fruits and vegetables are best.
- Your child's dietitian can help you build a healthy meal plan for your child. The goal is to get enough calories and protein without putting stress on the liver.
- In many cases, infants require extra vitamins (A, D, E and K) and supplemental tube feedings before transplant to maintain good growth. Your child's doctor will tell you if this is necessary.
Be sure we know how to contact you
If your child's liver will come from a deceased donor, we will call you when a liver is available. If we can’t find you, you may lose the chance for this liver. We will not leave a message on your answering machine or voice mail.
We must have current phone numbers where you can be reached 24 hours a day. This may include numbers for close friends, family and work. Please call us right away if a phone number changes. You will also need to contact the transplant office any time your child is in the hospital.
It is helpful if at least one other family member always knows where to reach you.
Plan your transportation
If your child's liver will come from a deceased donor, arrange your ride to the hospital in advance. Plan more than one route in case of rush hour or bad weather. You may need to arrange air travel if you live more than six hours from the hospital. It might be a good idea to call your local airlines to get their schedules.
Some families arrange for a company plane. Check with corporations in your area—they may be willing to make a plane or pilot available. This is good public relations for the company, which is why many are able to help.
Plan for your children and pets
Your child will be in the hospital for at least two weeks. Some children stay as long as two months. If you have other children, now is the time to plan for their care while you are with your child in the hospital. Get them used to another home if they will be staying there.
Your other children may visit your child in the hospital, but they must be carefully supervised by an adult and have no contagious diseases.
If you have pets, you will need to arrange for their care as well.
Plan where your family can stay
If family and friends will stay in the Twin Cities while your child is in the hospital, start looking for hotels. Start by checking our housing information on this Web site. You may also ask your social worker for options. Or call our Accommodations Office at 612-273-3695 or 1-800-328-5576.
Family members may not stay overnight in the hospital if your child has a semi-private room.
Plan what to bring to the hospital
Make a list of items to bring with yourself and your child to the hospital. Be sure to include:
- Comfortable clothes (jogging suits, sleepwear) that have soft, elastic waistbands or no waistbands
- A list of your child's current medicines (bring this to every clinic or hospital visit)
- Your child's favorite pillow, blanket or toys
If your child's liver will come from a deceased donor, be sure your packing list is ready when the doctor calls.
Prepare your family and friends
Please tell visitors that plants and flowers (cut or dried) are not allowed in your child's room. Your medicines will lower your immune system, and plants and flowers may increase your child's risk for fungal infection. When you return home, this will not be a problem.
Remind your family and friends that they need to take care of themselves in order to be the best possible support for you adn your child. This includes getting plenty of sleep, eating regular meals and limiting caffeine and tobacco. You might also warn them that your child will tire easily for the first three to six months after transplant. So activities may need to be limited.
Prepare yourself emotionally
Waiting for your child's transplant is stressful. Patients and families have told us that being in the hospital after the transplant is also difficult. Please think about how you and your family have dealt with great stress in the past. Think about what helped you through these periods as well as what you would like to do differently this time.
If you or your child are having a hard time, please ask for help. Social workers, transplant coordinators, clergy and other support staff are here for you. You may want to ask your social worker about our weekly support groups. Family and friends are invited to attend.
Finally, try to take a tour of the University of Minnesota Amplatz Children's Hospital. This may be very helpful for your child and your family. Your social worker can arrange the tour.
Problems to watch for while you wait
Be on the alert for any of the following symptoms. These may be signs that your child's liver disease is getting worse. If you notice a change, call your family doctor and your child's transplant coordinator.
Feeling sleepy or mentally cloudy
People with liver disease often have low energy and trouble sleeping. It is common to want to sleep all day and stay up all night. If these are problems for your child, be sure to tell your child's doctor. Have your child take a short nap in the afternoon if needed. As your child's liver disease gets worse, his or her ammonia levels may rise. (Ammonia is a waste product of the body.) This can cause your child's thought process to slow or your child may feel confused. You or other family members may be the first to notice this. Your child might need medicine to help him or her think more clearly. Do not let your older child drive if he or she feels this way.
Signs of bleeding
It is important to watch for any signs of blood in your child's vomit or stool (bowel movements). This can be life threatening. Call your family doctor or go to the emergency room if:
- Your child's vomit is bright red or dark brown (like coffee grounds).
- Your child's stool is black.
You may also notice that your child bruises more easily and that bleeding from cuts may be harder to stop. Your child may have nosebleeds. If using pressure will not stop the bleeding, call your family doctor or take your child to the emergency room.
Fever
Call your family doctor if your child has a fever over 101°F (38.3°C) (taken under the tongue).
If your child's liver is failing, he or she cannot fight germs as well and may get sick more often. An illness can be much more severe for your child than for other members of your family.
Fluid retention
When the liver is not working well, fluid may leak out of your child's blood vessels and build up in his or her abdomen (belly). This fluid is called ascites. If your child's belly gets large and he or she has trouble breathing, call your transplant coordinator or go to the emergency room. Your child may need to have fluid removed from the belly.
Swelling or fluid build-up may also occur in other parts of the body, such as in your child's legs or ankles. This is called edema. If you notice swelling, it may help to limit your child's salt intake.
Jaundice
When your child's liver isn’t working well, you may notice that his or her skin or the white parts of the eyes turn yellow. This is called jaundice. You may also notice darker urine or your child may complain of itching skin. This is not unusual. Be sure to take good care of your child's skin and use
lots of lotion. You may also ask your child's doctor for medicines to help with the itching.
