Relief is the feeling described by most families following HH surgery - it’s over! Choosing surgery is one of the most difficult decisions many families have ever had to make. Life after any procedure, especially HH surgery, takes time and patience. There is no way to know what will happen next. For some HH families it will be a few hours until you‘re released from the hospital. For others, it may be days or weeks. No matter what the time frame, preparing to return home afterward is just as important as the preparation before.

In the hours, days, or weeks following surgery, this is when you will begin to see a glimpse of life after. Some of the post surgical side effects begin to emerge. Some families will see the results they had hoped for such as (seizure cessation) and others may see new medical concerns such as diabetes insipidus (DI). This is one of the more common side effects. With DI, the kidneys are unable to conserve water and symptoms include excessive thirst and excessive urine output. DI can be treated by a nasal spray called DDAVP administered or in pill form administered one or more times a day. In some cases this will resolve itself and in others it has to be treated long term. Other common concerns are weight gain or hypothalamic obesity, sleepiness, temperature instability, a deficiency in pituitary hormone production which is described as low thyroxine and growth hormone levels for which replacement therapy is required.

Life after surgery requires time to heal, patience to see results, and the understanding that change will be constant. Transitioning back from a hospital setting to home may be different. The child/adult that left home a few days, weeks, or months ago may not be the same person that returns. Emotions, seizures, thoughts, and memories may increase or decrease; medications may change; and new medical concerns may arise. No matter what the post surgical issues are, individual needs change. Experiences will vary just as each child/adult varies; however, knowledge can provide strength and confidence.

Some common considerations for returning home are described below:

  • Hospital discharge paperwork. The transition begins with being discharged from the hospital. Once you have been cleared for discharge, the hospital staff will provide you with a discharge package that may include hospital medical records, surgical summaries, copies of MRI film, EEG’s, pre and post evaluations, and updated letters to local doctors. Keep these documents in a dedicated folder so you can refer back to them in the coming months during follow up and other appointments.
  • Post surgical medical monitoring. Your child/adult’s needs always vary as in all other HH cases. Some will require the monitoring of food intake, increase or decrease of water, memory loss, new medications as well as any other post surgical side effects discussed prior to the surgery or procedure. This will require training for all persons including family, friends, sitters, day care and school staff responsible for the task of care giving. Check with your local hospital's Social Service Department as to training they offer. Two other agencies that may provide training assistance are The Epilepsy Foundation (www.efg.org) and National Association of School Nurses (www.nasa.org).
  • Follow up appointments. Make appointments with local doctors. Be sure to provide all documents and copies of films from the hospital. Discuss concerns, new medications, need for additional referrals (e.g. nutritionist, occupational or physical therapy, endocrinologist, psychologist, social worker), medical equipment, monitoring needs, and clearance for return to normal activities or restrictions.
  • Budgets. Financial budgets will need to be revised again in light of the costs of the surgery and or follow up care. Be prepared to appeal any denials of coverage. Check that hospitalization and surgery has not exhausted limitations.
  • Leave of absence. Employers need to be notified of your return home. Arrange to return to work, alter your work schedule, or continue leave. Finalize arrangements for FMLA (Family Medical Leave Act) if available. Extend vacation leave, or arrange for childcare services.
  • Returning to school. If your child is school age, discuss current medical status, including anticipated date for child/adult to return to school. Individual schools will advise as to documentation required to return. Domestic and international educational policies and guidelines will vary, so check with your local schools. If there is a need for medical services at school, such as daily administration of medication, monitoring or intervention treatments, school nurses and/or administrators must be notified. Some needs may require contacting district offices for intervention. NOTE: Within the United States, it is important to become familiar with the federal law Individual Disabilities Educational Act (IDEA)(www.ed.gov/offices/OSERS). This law was enacted to assess the needs of persons with disabilities and provide special education programs and services to help them succeed in school.
  • The rest of the family. Keep communication lines open between family members. As discussed in the preparation for surgery, it remains important to keep everyone informed. Remember everyone wants to feel involved. From time to time, siblings will focus on the extra attention being given to the HH child/adult, and express their feelings. Remember to validate their feelings and explain the need for extra attention. Make arrangements with the other kids to have time alone with you. As the needs of the HH person increases or decreases over the years, the feelings of the siblings will continue to require acknowledgement and validation
  • Behavioral Changes. Concerns related to HH rages or depression will continue to vary. Some families that experienced rages daily (pre-surgery) saw them diminish over the few months and years. Others saw rages emerge for the first time. The same is true for depression and other mood disorders. There are many different views on these issues. Mood and behavior concerns have been linked to HH, auras, seizures, and medication side effects. Families have explored and chosen some traditional and untraditional interventions to assist in this area including adding and/or eliminating medications, changing diets, trying natural herbs and oils, using behavior modification, and adding psychiatric therapies and/or parenting skill programs. Some resources to explore are:

    “How to Handle a Hard to Handle Kid” by C. Drew Edwards, PhD

    “The Secret of Happy Children” by Steve Biddulph

    “Raising Boys” by Steve Biddulph

    “Treating the Explosive Child” by Ross Greene & J, Stuart Ablon

    “No Blow –Ups!”” Cool Down and Work Through Anger” in Bernstein Bears Series

    Brain Injury Association of America (www.biausa.org)

    Susan Epstein (www.parentingbookmark.com)

  • Enlist Support of doctors, teachers and others. Sometimes seizures stop completely and other times they diminish overtime. Sometimes memory issues cease and other times new strategies are implemented to assist with any memory loss such as writing things down, using a tape recorder, charts, and calendars. Hunger concerns are addressed through nutritional changes (e.g. limiting portions, adding more fruits and vegetables, smaller frequent meals, consultations with nutritionist). When necessary, monitoring of various fluid levels become part of the daily routine. Hormonal imbalances and endocrine difficulties may require medications, annual bone scans, and blood tests.
  • Adapting to change. Adaptation is the key post surgery. Understanding that things have and will continue to change instead of constantly asking yourself “Why my child or me” and “How did this happen to our family.”