Once your child has received a heart transplant at Lurie Children’s, the constant stress related to having an acutely ill child fades and your family should start to return to a more normal life. Your child should soon begin to participate in developmental, social, educational and recreational activities that are appropriate for their age.
Taking your child home with a new heart to enjoy all of these things is exciting, but it also can be very overwhelming due to the many medications and new information you have been given. You are ready to leave the hospital when you and one other caretaker are able to do the following:
Demonstrate appropriate knowledge, measurement, administration, and recording of medications and vital signs.
Verbalize signs and symptoms of rejection, infection, and 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 is able to sit or stand on a regular bathroom scale, you will need to weigh them every morning. 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. Your child may be retaining fluid.
Medic Alert Identification
You will need to get an identification bracelet or necklace for your child so that healthcare professionals will know that your child has had a heart transplant in case of an unintentional injury or other type of emergency. The Medic Alert bracelet or necklace will be ordered by the transplant coordinator. It usually takes about four weeks to arrive.
When to Call the Transplant Team
You should call the transplant team if your child exhibits:
Call if temperature is 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.
The Transplant team includes:
Heart Transplant nurse practitioners: Susan Blensdorf, Christina del Salto, Elizabeth McGhee, Jodi Bohl