Pediatric Liver Transplantation Information for Healthcare Professionals

Chapter 13: Discharge Needs and Life After Transplant

Medications

In preparing for discharge, it is important for you and your child to understand why and how each medicine is given. Discharge will not occur until all of the medication levels are stable, and parents understand how to take care of their child at home.  The clinical nurse specialist will help obtain all necessary medications and medical equipment for home.

Some important points to remember:

• Do not increase or decrease your child’s medication without discussing it with the physicians first.
• Get more information from the drug store before the supply runs out.  Plan ahead for weekends and vacations.
• When your child no longer needs a specific medicine, it will be stopped by the transplant physician.
• Do not give over-the-counter medications for colds or flu without consulting your physician.

The staff will teach you how to recognize and report signs of potential complications and, if necessary, how to care for your child’s central line, tube feedings and the T-tube.  Initially, clinic visits will be scheduled twice a week.  If your child is stabile after a month, the labs and visits can be scheduled once a week.  Eventually, this will decrease to twice a month and then finally monthly.  On the day you come to clinic, do not give your child a dose of Cyclosporine or Prograf.  Bring the dose to the hospital and give it to your child after blood work is drawn.

When To Call The Doctor/Clinical Nurse Specialist

• If your child repeatedly vomits medicine after it is given
• If several medication doses have been missed
• If too much medicine is accidentally given
• If your child has any of the side effects mentioned
• If your child is vomiting or had diarrhea (more than five runny stools)
• If your child has any symptoms of rejection

Blood Pressure Monitoring

Taking your child’s blood pressure may become part of your daily routine since most children who have had a liver transplant have some degree of hypertension (high blood pressure).  Because most children will continue to require blood pressure medications after discharge, it is important that you learn how to measure and record your child’s blood pressure properly.  The primary nurse will show you how to take your child’s blood pressure, and tell you what pressure range is good for your child.  If the BP consistently drops below the range or is elevated above the range, contact the clinical nurse specialist at once.

Blood pressure is the force used by the heart as it pumps blood throughout the body.  The highest pressure exerted against the arteries when the heart contracts is the systolic pressure (top number).  The lowest pressure in the arteries when the heart is at rest is the diastolic pressure (bottom number).  This is recorded as 100/60.

The tools used for measurement of blood pressure are a stethoscope and a blood pressure cuff with a gauge.  The staff will help you obtain a properly fitting blood pressure cuff and stethoscope.  The proper size cuff is needed to obtain an accurate measurement.  You will need to k now how to find (palpate) the brachial artery in the bend in the elbow.  A quiet room will help you to hear the sounds clearly when taking blood pressure.  Practicing on adults will help you sharpen your blood pressure taking skills.  Children do not always cooperate, nor do they tolerate practice sessions that require them to be very still for long periods of time.

The step-by-step procedure for taking blood pressure is as follows:

1.       Wrap the blood pressure cuff around either arm one inch above the elbow.

2.       With your finger tips, feel for the brachial artery.  You will find it is in the center of the inner bend of the elbow.

3.       Place the ear pieces of the stethoscope in your ears and the flat side of the stethoscope over the brachial artery.

4.       Close the valve on the hand bulb by turning the screw away from you (clockwise).

5.       Pump the hand bulb while looking at the gauge.  Continue to pump until you hear no sound and the mercury gauge is 20 above the place where you hear the last sound (usually 160 in most children).

6.       Slowly open the valve by turning the screw counter clockwise, toward you.  Watch the gauge and note where you hear the first sound.  This is the systolic pressure.

7.       Continue to listen as you slowly release the valve.  Listen for a muffling or disappearance of the sound.  This is the diastolic pressure.

If you don’t hear the sounds clearly, deflate the cuff and wait a few minutes for the arm to refill with blood.  Take the blood pressure again.

Life After Transplant

Nutrition

If your child was eating poorly before the transplant, it may take some time before he will reach an optimum state of well-being.  (It is not uncommon for some children to lose as much as 10 lbs.)  After the transplant, your child’s physician may order additional nutritional support in the form of liquid supplements.  As long as your child is eating a reasonably balanced diet containing foods from the food guide pyramid (meat, bread, dairy, fruits and vegetables), then you know he has a healthy diet.  Remember, a number of foods can be substituted for ones your child dislikes.  A well-balanced diet with enough calories and a standard multi-vitamin (e.g. Flintstone’s, Bugs Bunny) may be all your child needs.

Steroids (Prednisone) may cause your child to have an increased appetite and weight gain.  Do not allow your child to get into the habit of overeating.  As the steroid dose decreases, his increased appetite should become less of a problem.

A few points to remember about meals and snacks:

• Children often eat better when they are not urged or tired.
• Usually, small children prefer small portions with second helpings, rather than one large serving.
• Suggestions to increase your child’s intake of high calorie foods include offering nutritious snacks such as raisins, cheese and granola, adding non-fat milk to other foods (whole milk, casseroles, puddings) and generously using foods such as mayonnaise, creamed sauces, dressings, margarine/butter, cream cheese and peanut butter.

Your child now has a healthy liver and should be able to digest foods high in fat.  Decreasing the salt (sodium chloride) in your child’s diet may help to decrease some water gained after the transplant.  Limit salty foods and do not add salt to foods already prepared.  If your child’s physician orders a specific salt-restricted diet, your dietician can provide written guidelines.

Activity

Your child can return to his normal activity level almost immediately.  However, he should avoid contact sports and vigorous exercise for at least three months after the transplant surgery.

Many children have weak muscles due to chronic liver disease.  In fact, many children with liver disease have motor delays.  After transplantation you should notice a gradual improvement.

Dental Care for Your Child

All children should receive regular preventive dental care after the primary teeth are in place.  Children with liver disease may have some staining of the primary teeth or permanent teeth.  Regular preventive care of the teeth will not remove the discoloration.  More frequent dental visits may be required to prevent gingival hyperplasia (overgrowth of the gums), especially in children who are taking Cyclosporine or Nifedipine.  Inform the dentist of your child’s transplant history and obtain antibiotics prior to routine (teeth cleaning) or invasive procedures (filling a cavity).  Your dentist can consult with the transplant office regarding the protocol.

Sun Exposure

Because your child is taking steroids, his skin will be more sensitive to the sun.  Apply an effective sun screen lotion on all exposed areas.  The sun screen should have a minimum sun protection factor (SPF) of 15.  Reapply the lotion frequently if they are swimming.  Avoid exposure to the sun between 10 a.m. and 2. p.m.

Medical Alert

A medical alert application will be provided prior to discharge.  It is very important for your child to wear a medical alert bracelet or necklace at all times.

Immunizations

Young children will need to continue to receive regular immunizations.  They should not receive live virus vaccines such as oral polio or the MMR.  A killed version of the polio immunization (Salk vaccine) can be provided by the pediatrician.  The disadvantage of administering the Salk vaccine is that it must be given by injection and may require multiple boosters.  Because oral polio is shed through the stool, younger brothers and sisters in the same household should be given a killed version of the polio immunization too.  If other children in the same house receive a live virus vaccination, they should be isolated from the transplant recipient for two weeks.

Childhood Illnesses

Many children have not had chicken pox prior to transplantation.  Chicken pox can be a serious illness for your child because he is immunosuppressed.  Chicken pox is spread through the air or by close contact with someone who has the virus.  A person with chicken pox is contagious 1-2 days before the rash develops.  The contagious period lasts until all of the pox have developed a scab.  If your child is exposed, they may develop chicken pox from 14-21 days after the exposure.  Chicken pox often begins with a fever and a splotchy rash on the trunk that spreads downward.  The rash consists of small watery blisters with red rings around them.

If your child is exposed to another child with chicken pox, inform the transplant office within 2-3 days.  Your child will receive a zoster immune globulin (VZIG) injection to prevent or lessen the severity of the chicken pox.  Children who break out with chicken pox must be treated with 10 days of IV medication (Acyclovir), so contact the transplant office immediately if you suspect this childhood disease.  The shingles virus (Varicella) that adults and some children get is the same as the chicken pox virus.  It should be treated in the same way.

Behavioral Changes

It is not unusual for children to become very demanding after you return home.  Your child probably received a lot of attention during the illness and hospitalization.  It may take some time before your child realizes he does not need to be the center of attention.

After transplantation, your child will have a higher energy level.  They may behave aggressively to act out feelings of fear, frustration or loss of control experienced in the hospital.  Some children have fears about the incision and worry about their body not being intact.  To help deal with fears, medical play in the hospital and at home may be helpful.

Proper limit setting and appropriate disciplinary measures should help your child adjust.

Return to School and Daily Routine

During clinic visits, parents will be advised when to send children back to school.  In the meantime, contact the school and obtain home tutoring.  Discuss with your physician the appropriate activity and return to physical education and sports after transplantation.  Families with younger children will be referred to the county Infant and Toddlers program for developmental support.  At the time of discharge, avoid large crowds at the mall and grocery store.

Because of changes in physical appearance some children experience teasing on their return to school.  Try to be as supportive as possible and help the child or teen to feel confident enough to handle the teasing.

The Future

The field of transplantation has grown tremendously over the last 10 years. Every day new discoveries are made about better surgical techniques and new immunosuppressant medications.  The expectation is that all of your children will live a full life.