Preparing for any procedure especially surgery, takes time and planning. Doctors must review medical records and approve the need for any procedure. Insurance companies will need to approve all procedures. In some cases this process can be easy and in others unrelentingly frustrating. Families have reported a need to secure letters of support from doctors, clergy, schools, other HH families and politicians to obtain insurance approvals.

Some hospitals provide information packages outlining their policies and procedures, including guidelines for the 24 to 48 hours just prior to treatment. This information is great and comforting however, what do you do in the months, weeks, and days before that affect your family and everyday life.

Several new areas of importance begin to emerge. There is a need to create a task list and a realistic time line. The list and time line is as individualized as each HH child/adult and family. Because transition (changes of any kind) can be a struggle for most children/adults with HH, planning will be beneficial. Some areas to consider include:

  • Financial budgets should be revised. This may mean examining savings accounts, obtaining loans, refinancing homes, and fund raising. Pay bills early if possible so that they are not piling up until your return home.
  • International travel requirements change from time to time. Check with local immigration offices the State Department and travel agencies. Basic travel documents needed are a valid passport, visa, authentic documents, emergency travel information, register with the State Department.
  • Travel within the country will require determining the most appropriate means of transportation based on individual needs. Whether utilizing air, train, bus, or car explore available discounts. Some airlines and organizations have provided assistance to families in the past (e.g. Southwest Airlines, American, US Airways), Angel Flight (angelflightsoars.org), Make a Wish Foundation (wish.org).
  • Secure lodging close to the hospital. Most hospitals have hotels and lodging close by that may have agreements to provide patient families with special rates. Check with the Hospital’s Patient Liaison for more information. There are also Ronald McDonald (rmhc.org) Houses that should be contacted early for possible availabilities during your stay.
  • Arrange for childcare. Any child/children that will not be traveling will need to be placed in the care of a guardian. Schools may require letters from parents and picture identification of anyone temporarily named as guardian. Provide guardian with necessary medical information, insurance cards ,physicians, and authorization for medical treatment if necessary (Medical Proxy). Provide schedules, phone numbers and list of foods, medicines, and rules for all kids in care, including outside school activities.
  • Notify work and schools early of plans. Estimated time needed for recovery varies from person to person. Hospital Patient Liaison maybe able to provide an approximate time frame for recovery. Make arrangements for your vacation time or a leave of absence. Investigate FMLA (Family Medical Leave Act) options with employer. Request school work for child/children that will be traveling. Prepare for the unexpected. Sometimes a few days stay may need to be extended.
  • Maintain contact with hospital liaison. During the months, weeks and days prior to surgery maintaining communication is important. Ask any questions that you have thought of including (Can one-person sleep in the room? Is there a place to clean up in the hospital? Are there places to eat?). Should there be changes or concerns they can be addressed early.
  • Weeks before begin packing clothes and toiletries for child/adult scheduled for surgery. Remember to check on document and clothing requirements outlined by hospital. (E.g. Recent blood work, EEGs, MRI, button up shirts, pajamas, and elastic waist pants, slippers—comfortable clothes). Pack favorite toys, blankets, clothes, games, movies,cds, pictures, books or anything that will provide comfort after surgery. Remember to pack your own clothes and toiletries too. Try to keep it easy, comfortable and simple.
  • Open communication lines between all family members. Everyone will want to know what is going on, and what will happen. Hold family meetings and discuss plans step by step. If possible get family members involved. Provide them with task to allow them to feel that they are a part of the planning process. Use words and terms that are age appropriate

These can be stressful times for everyone involved. According to many families, being aware of what to expect and preparing everyone involved to the best of your ability helps lower stress levels. As already known, transition is a struggle for most persons with HH, therefore preparing early may assist during these times.