Family Guidelines

Aftercare Follow-Up

A follow up protocol can be implemented with the assistance of Rotary, Rotaract, Medical and School personnel in collaboration with the immediate and extended families of the children. Most children do very well after surgery. Some need attention. Rotary Clubs and Gift of Life chapter members can follow up with home visits and use these guidelines for a framework to help families evaluate their child's progress.

1. Medical Recovery –
   
   • a. Before discharge from the hospital, the staff can talk with the family and child regarding their behavioral and educational goals upon return home.
   • b. Physicians and rehab staff can help the family develop reasonable goals for recovery medically and socially
   • c. Design a chart for the family to keep a record of exercises, medications, food.
   • d. Determine what assistance the family needs in taking the child to cardiac follow-ups and administration of meds, etc.
   • e. Determine what the family understands about heart disease, what the child's diagnosis was, what the medicines are for and the importance of taking them as prescribed.
   • What constitutes a possible distress symptom requiring physician evaluation
   • What is a reasonable level of discomfort during recovery
   • Signs of Infection:
   • The wound becomes very red
   • Secretions coming out of wound
   • The skin around it is really hot
   • The skin is swollen and inflamed
   • The child has a fever
   • The child begins to feel worse
   • Signs of Heart Distress
   • lips turn blue
   • Difficulty breathing or rapid breathing
   • Restlessness
   • Cold, clammy skin, or unusual sweating
   • Possible side effects of medications and need for rest
   • Fatigue
   • Anxiety
   • Sleepiness
   • Lethargy

   Some of the above signs may be normal as the each child recovers. If parents have any questions about what is happening, it is very important that they feel free to call the doctor or the staff at the hospital and make an appointment if necessary.

2. Psychological And Educational Goals - i.e., counseling; to learn to read, etc; to learn a sport; to gain more friends; to do better in school; to enter school.
• a. Parents and school need to collaborate on an educational evaluation
• b. Parents need to be informed about remedial help for the child if he is not at age level in school.
• c. Coach the family to give positive comments to their child for all social, educational and personal achievements in functioning.
• d. Coach the family not to criticize the child directly, but to use appropriate discipline and consequences for behavior modification and change
• e. Coach the family to talk to the child, age appropriately, to find out his needs and wishes following surgery. IMPORTANT!! – Ask what does he want to do now in school, the neighborhood, the church, at home. Many children want to learn, play, or do more. Some may want to move more slowly.
3. Effect Of Recovery Upon Family Functioning
 
• a. Determine family expectations of child as he gets stronger and more effective. Explore with the family how they normally reward their child for doing well and discipline him for misbehaving. Coach them to be aware of the child's need to be more independent as he feels better.
 
• b. Evaluate the family's perception of their role and adjustments they need to make as they are needed less and child needs less supervision and can do more for himself
• c. Determine what the family may need from the extended family in terms of support.
• Child care
• Financial help
• Educational tutoring
• transport to and from physicians and follow-up appointments
• d. Family may need help in explaining to siblings and extended family what the child has experienced. His rate of recovery is very individual, and needs to be supported.
• If child needs different disciplinary consequences because of his heart disease, coach parents to explain to sibling. Overprotection or lack of discipline is a common reaction of parents who need to learn more effective ways of setting limits
• e. During recovery is the time to attend to others in the family as well and keep the child's needs in perspective
4. Ongoing Contact With Local Gift Of Life And Rotary Chapters
• a. Encourage family to keep in contact with local chapter members to communicate progress and goals. This contact could be initiated by the local Rotarians and continued for 1-5 years.
• b. Ask each family to contact their local GOL chapter every 6 months to report how the child is doing and any special achievements or needs that might arise.
• School achievements
• Athletic activities
• medical changes
• psychological or emotional changes