AWAKENING

Getting Ready for the Transition to a Rehabilitation Hospital

• The ICU unit’s job is to stabilize the patient. Understand that when your child is stable, you will need to investigate the option of taking him or her to a rehabilitation hospital.
• Have another family member at the ICU to advocate for your child while you’re investigating potential rehabilitation hospitals.
• Talk to a social worker about the transition ahead.
• Find out what do rehabilitation hospitals actually do. Rehabilitation is to assist your child in regaining or gaining maximal independence. Rehabilitation helps the survivor to relearn old skills, acquire new skills, and develop skills that have been lost or that will not develop.
• Know that rehabilitation requires a comprehensive team approach. The family’s involvement is crucial.
• Depending on the severity and location of your child’s brain injury, recognize that the outcome of therapy may differ.
• Learn some basic brain physiology. Neurons are cells in the brain that send messages to other parts of the brain and body. Damage to these neurons can be temporary or permanent. When neurons are damaged, they may recover on their own or die, which could result in the loss of certain abilities or make new connections and take over the job of the damaged neurons.

Visiting a Potential Rehabilitation Hospital

• Understand the duration of your stay at the rehabilitation hospital is likely to be unsure. Your child could be
  there 3 weeks, 3 months, or 3 years.
• Take into account the distance from your home to the rehab hospital, as well as parking and traffic issues. For example, will you have to pay for parking?
• Realize the doctors and nurses you are currently working within the ICU will no longer follow your case or have any input.
• Recognize that facilities differ: not all can manage someone on a ventilator or with a tracheotomy, or care for an individual with behavioral issues. Some facilities have different types of care for someone who is in a coma or catatonic versus more independent.
• Tour different facilities and watch therapies in action.
• Ask to speak to former patients and or their caregivers about their experience at the facility.
• When visiting the facility, bring your spouse/partner or another family member or friend with you.
• Take notes or bring a tape recorder. Be prepared with questions.

First Impressions Are Often Right

• Pay attention to how you feel when you first walk in.


Paul & Dixie at the ICU

• Note if the people appear friendly and professional.
• Are you seen in a reasonable amount of time?
• Do the premises appear to be well maintained, clean, safe, etc?
• Were all your questions answered?
• Was the staff compassionate?
• Suggested Questions:
  What will be the source of funding?
  How is this facility accredited?
  Is there a waiting list?
  Is there a head doctor on the floor at all times?
  What is the patient-to-nurse ratio?
  What is the turnover of staff?
  Is there bilingual staff?
  How often will my child receive services? How long are the sessions
  What is your success rate for patients with traumatic brain injuries?
  Can I speak to other patients who have been here?
  What therapies are offered?
  Do you have a special brace clinic or orthopedics department?
  Do you have a therapeutic aquatics department?
  What about assistive technology?
  Do you provide tutors for school work?
  Do you have counselors or social workers? Do you provide family therapy?
  Can my other children visit? What is the involvement of family?
  Can I sleep in the room and be with my child 24 hours a day?
  Is there a chapel, cafeteria, separate bathrooms, or sleeping areas for parents?
  What are my rights?
  Do you help with the transition home?

Making the Transition

• It’s okay to feel apprehensive as you leave the ICU.
• Communicate feelings with your spouse/partner; try to comfort each other.
• Be prepared that the atmosphere in the rehabilitation hospital will be more subdued than in the ICU.
• Find out where the resource room or library is and where you get Internet access to learn more about TBI.
• Be prepared to see very disabled children, wheelchairs, walkers, etc.
• Understand medical terminology such as catatonic, vegetative state, etc.
• Know that your child may need to share a room with another patient; ask for a patient in the same age
  range and sex of your child.
• Have one parent stay in the hospital, while the other is at home with the other children.
• Set a time of day when you can connect with your spouse/partner by phone or e-mail.
• Bring in items from home: I-pod, radio, clothes, posters, pictures, diary, pillows, etc.
• Call home to talk to your other children; answer their questions as best you can at their age
  level of understanding.
• Rest when you can.
• Get ready to fight the fight of your life.
• Write down the names of all therapies and the names of all therapists, nurses, and doctors.
• Know the names of the medications your child is now on and when they need to be administered. Advocate for your child when the nurses are late in administering drugs or changing the bed or undergarments.
• Ask where the cafeteria is. Are coupons provided for parking or meals?
• Talk to a financial advisor at the hospital and find out about resources they provide.
• Talk with a social worker about getting a case worker involved from your insurance company.
• Stay with your child or have another adult at the rehab hospital 24 hours a day.
• You may begin to realize that there might be long-term effects from the injury and begin to feel intense fear and anxiety.
• You may face the loss of what might have been.

A few things I’ve learned since traumatic brain injury crashed into our lives–

1. First, care giving is exhausting, and it is not a weakness to ask for help.
2. Second, it is vital to nurture yourself and your marriage whenever possible.
3. Third, it’s imperative to take time away from the hospital and injured child to take care of your other children’s needs.

I have also learned that to except the “new” person who emerges after brain injury, families must mourn the loss of the “old” one who is gone…and then move on to embrace life’s challenges and changes and to love unconditionally. What I wished I had known at the beginning of our journey was to reach out more for help, resources, and no matter what the circumstances, never to give up, to keep hope alive.