As you and your family prepare for a heart transplant, the team at Lurie Children’s will attempt to answer your questions and help you during this period.
As soon as the cardiac surgeon and cardiologist accept an offer for a heart, the procurement coordinator on call will call you by phone. Please ensure we have all your phone numbers so we can reach you at any time. If you should move or get a new phone number, be sure to notify the transplant team as soon as possible so that we can update our records.
Be prepared ahead of time to leave the house within 15 minutes. It is helpful to have a bag packed. If you are coming from out of town, you should have established travel plans. Do not give your child anything to eat or drink after we call you in for transplant.
After you reach the hospital, the transplant coordinator will direct you to the Admitting Department or the Emergency Department to be registered. Once you arrive on the inpatient floor, the team will be waiting for you to begin the preparation for surgery.
A lot of things need to happen in a short amount of time before surgery, including chest x-ray, blood tests, vital signs, height, weight and the first by-mouth doses of antirejection medications.
As soon as your child is ready for the operating room, we will take you to the surgical floor.
Your child will go into the operating room and the operating room nurse will take you to the nearby surgery waiting room.
It is good to take breaks with your family to eat and rest but be sure to tell the operating room staff where you will be in case of an update, which will occur periodically throughout the procedure.
Post Heart Transplant
Immediately after the heart transplant surgery at Lurie Children’s, your child will be taken to the cardiac intensive care unit (Regenstein CCU). You may go to your child’s room approximately one hour after your child arrives in the Regenstein CCU.
Several IVs, chest and mouth breathing tubes will be inserted. The breathing tube will stay until your child is strong and awake enough to breathe on their own. After the tubes are removed, normal eating and drinking will be possible. IV medications will be changed to oral doses after normal eating and drinking begins.
A Regenstein CCU nurse will explain the monitors and tubes, and the medication given to your child. Pain medication and sedation is given to help with comfort.
While in the Regenstein CCU
A typical stay in the Regenstein CCU is at least two weeks, until your child is ready to leave the hospital.
Your child will have a nurse who is constantly monitoring them. The nurses will encourage you to participate in your child's care as much as you feel comfortable with.
Visiting hours for healthy parents/guardians are seven days a week, 24 hours a day. Due to the amount of equipment and limited space, we ask that only two people be at the bedside at any one time. Anyone who has been exposed to communicable diseases or who is ill (cold, flu, etc.) cannot visit the CCU.
Protection from Infections
Your child will be in a special isolation room to protect them from infection throughout their stay in the hospital. Before you enter their room, you will be asked to wash your hands, wear a mask, gown, hat and gloves. Hand washing is the most important way to protect your child from infection after surgery.
Getting Ready for Discharge
During their stay in the CCU, any remaining tubes and IVs will be removed. They will begin to walk about the room and participate in activities to increase their strength with the help of a physical therapist. The nurses on the floor and the transplant team will get your family ready to go home. With their help, you will learn how to take care of your child at home. After discharge from the hospital, families will stay at the Ronald McDonald House Near Lurie Children's for 2-4 weeks to get acclimated to life outside of the hospital. The Ronald McDonald House is located five blocks south of Lurie Children’s and has two dedicated transplant floors.
After receiving a heart transplant, your child will require a variety of essential medications. Each child is unique. Therefore the transplant surgeon and cardiologist may prescribe different anti-rejection medications based on each special situation.
It is extremely important for you and your child to learn how to give each medication, know the correct doses, possible side effects and special considerations. Your child may not go home until this education is complete, which includes: how to care for a transplant patient; how to take vital signs; medication administration and other medication interactions.
Give medications on a regular schedule in the same way every day to avoid mistakes and harmful drug interactions. You might find it helpful to keep a home medication journal.
Do not give your child any over-the-counter or herbal medications without first checking with the transplant team.
Call before you fill any new prescriptions written by anyone else (for example, your pediatrician or primary care provider) to be sure it doesn’t interact with transplant medications.
Store all medications away from light, heat and children. Do not store in the bathroom because heat and moisture will change the medication’s effects. Do not refrigerate medications unless labeled by the pharmacy to do so.
Bring your child’s medication with you every time you visit the hospital.
If you miss a dose, give it as soon as possible. Do not double the dose. If your child misses two doses, call the transplant nurse.
Never stop giving your child medication and notify your physician if a dose was skipped.
Always keep medications with you whenever you travel — do not check your child’s medications with your baggage. Always take enough of each medication.
Tell the transplant nurse if your child experiences side effects.
Speak with a transplant nurse before considering a generic preparation or before adding, stopping or changing the way you give any medication.
Know all the medications your child is taking and the possible side effects.
Whenever you have your child’s anti-rejection medication refilled, make sure it looks the same as before.
If you have any questions about your child's medications, please call your child's transplant coordinator or your doctor without delay.
Your child should soon begin to participate in developmental, social, educational and recreational activities that are appropriate for their age.
Taking your child home post-transplant is exciting, but it also can be very overwhelming due to the many medications and new information you have been given. You are deemed ready to leave the hospital when you and one other caretaker can do the following:
Demonstrate appropriate knowledge, measurement, administration, and recording of medications and vital signs.
Recognize signs and symptoms of rejection, infection, and know when to call the transplant coordinator.
Successfully complete a CPR class and 24-independent care given at the hospital.
An overall assessment of your child's general health should be part of your daily routine.
A change in any vital sign may indicate a problem.
You must record vital signs on your "Home Medication and Vital Sign Record" and bring this record to the clinic for evaluation by the heart transplant team.
If your child can sit or stand on a regular bathroom scale, you will need to weigh them every day. Please try to do this at the same time every day (preferably in the morning after he or she uses the bathroom), wearing the same amount of underclothes.
Keep track of your child's weight. If your child has gained more than two pounds overnight or more than two or three pounds over a few days, you need to call the transplant coordinator as your child may be retaining fluid.
Medic Alert Identification
In case of an unintentional injury or other type of emergency, your child will need to wear an identification bracelet or necklace so that healthcare professionals will know they have had a heart transplant. The Medic Alert bracelet or necklace will be ordered by the transplant coordinator and will arrive in about four weeks.
When to Call the Transplant Team
You should call the transplant team if your child exhibits:
A temperature of more than 100 degrees F or 38 degrees C
Nausea, vomiting or diarrhea
Chest or abdominal pain
Any skin rash or itching
A frequent or persistent cough or congestion
Sweating or “chills” at rest or at night
Pain or difficulty breathing
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
Puffiness or swelling of eyes, face, arms, hands, feet and legs
A change in color of lips, face, hands or feet (pale or blue)
Dark black stools or pain with stools
Red or pink colored urine
Decrease in the amount of urine or frequency of urination
Decreased exercise tolerance
It is extremely important that you report any changes in your child's condition to the transplant team. Your team contact 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 heart transplant coordinator can be contacted at 312.227.4100. During the night and on weekends, parents should call 312.227.4000 and ask for the cardiologist on call.
Keeping the Heart Healthy
A heart transplant is not a cure. In fact, a heart transplant requires a lifetime commitment by both the caretaker and the patient. Although the transplant team at Lurie Children’s will continue to provide you with support and education, it's up to you to follow their instructions.
Whenever possible, all required immunizations should be given before transplant. After transplant, your child should not receive any routine immunizations until approval is given by the transplant team (about 12 weeks after transplant). Modified immunizations will then be given according to the usual well-child schedule.
Because of the immunosuppressant medications, your child should never receive live virus vaccines including MMR (Measles, Mumps and Rubella), OPV (oral polio vaccine), or varicella. Infants and children who are immunosuppressed should receive the inactivated polio vaccine (IPV). All members of the family should also receive IPV. Family members can, however, receive the MMR. Call the transplant team immediately if your child has been exposed to chicken pox so that VZIG, a shot, can be given to lessen the severity of the disease.
Cleanliness After Transplant
In the first month after transplant your child will be on the highest dose of their immunosuppressant medication, which means that this is the time they are more likely to get an infection. During this time, avoid crowded areas such as malls, theaters and grocery stores. If you do go to one of these public areas, go when other kids are in school and it is likely to be less crowded.
The most important guard against germs and infection for your child is good, consistent hand washing for all family members.
While you may visit the transplant team often, it is also important to follow up with your pediatrician to monitor your child's growth and development and help you with any problems not related to the heart (for example, an ear infection). It is important that your pediatrician is aware that your child has had a heart transplant and what their medications are. A summary letter is sent to your pediatrician after discharge from the hospital and after each visit.
Good oral hygiene is a way to keep your child healthy and free of infection. Before transplant, it is best to take care of cavities and other dental work. Regular dental check-ups are important to prevent infection but should be avoided for the first six months after transplant when the amount of immunosuppressant medications are at their highest.
The transplant team will let you know when you may return for regular dental visits. Antibiotics must be taken as prescribed, before the dental visit, to prevent infection in the blood or heart. Notify your dentist of this when making the appointment for your child.
After transplant, the medications prescribed will cause sun sensitivity and put your child at a higher risk for skin cancer. It is important to always apply sun screen when outdoors and to check your child's skin often for irregular moles or growths. The transplant team may refer your child to a dermatologist for any suspicious skin conditions.
Hearing & Vision Evaluations
We recommend yearly hearing and vision exams. Children who are on Prednisone should be evaluated annually by an ophthalmologist. Also, some of the medications that your child received during transplant can increase the risk for hearing loss.
School is an important part of your child's life. The transplant team encourages children to return to school as soon as possible after transplant (about three months). While recovering in the hospital and at home, a tutor may help your child keep up with their studies. It is important for others to understand that once your child has received a new heart, they’re no longer ill but need to continue to take medications and be followed by the transplant team. Please contact the transplant coordinator if your child is exposed to any communicable diseases.