Going home

Once your child has received a heart transplant, 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 his or her 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:

Health assessment

General
An overall assessment of your child's general health should be part of your daily routine.

Vital signs

It is important to check your child's blood pressure and temperature daily. A change in any one of these vital signs may indicate a problem. You must also record these vital signs on your "Home Medication and Vital Sign Record" and bring this record to the clinic for evaluation by the heart transplant team.

Daily weights

If your child is able to sit or stand on a regular bathroom scale, you will need to weigh him or her 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 health care 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:

• A frequent or persistent cough or congestion
• Fever greater than 101.5°
• Nausea or diarrhea
• Chest or abdominal pain
• Any skin rash or itching
• Red or pink colored urine, decrease in the amount of urine, frequent urinating or pain with urination
• Vomiting
• Sores, blisters, or lumps in armpits or groin area
• Exposure to Chicken Pox
• White patches in mouth (on tongue, inner cheeks or gums)
• Sores, blisters on mouth, lips or gums
• Yellow color change in whites of eyes
• Dark, black stools or pain with stools
• Puffiness or swelling of eyes, face, arms, hands, feet and legs

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 Children's Memorial Hospital or by your local pediatrician. During weekdays (8:30 a.m. - 5:30 p.m.) the heart transplant coordinator can be contacted at 773.880.4533. During the night and on weekends, parents should call 773.880.4000 and ask for the cardiologist on call.