1. How long will my child need to stay here?
Your child’s stay in the Neurorehabilitation Program varies from child to child and is based on information such as severity of illness or injury, ability to participate in the program, and progress made towards individual goals. Your child’s care team will evaluate your child and give an estimated length of stay at the first family conference. This first conference usually occurs within a few days of admission to the program. The average length of stay for most of our patients is 3 - 6 weeks, but could range from 1 week to 10 weeks. The discharge date may be revised based on your child’s needs and progress.
2. When can I visit my child?
Parents and grandparents are welcome 24 hours a day; other guests may visit between 9am-9pm. Please refer to our current visiting guidelines for additional information. If there are guests who you do not wish to visit with your child, please notify your nurse so that staff can be informed of your preference.
3. Can I leave the hospital?
Yes. You are not required to stay with your child at all times. Your care team may identify times that would be most beneficial for you to be present to optimize your child's care.
4. Who is allowed to stay overnight and what is the procedure for authorizing this?
Parents, grandparents, or guardians may stay with a patient overnight. One family member may sleep overnight in your child’s room. If parents wish to make special arrangements for another adult to stay with their child, please obtain approval from your nurse in advance.
5. What is a typical day like in the Neurorehabilitation Program?
While each child’s day will be slightly different, there are several similarities. After breakfast, therapy begins around 9:00 a.m. and may last 1-1/2 to 3 hours depending on your child’s needs and tolerance. Therapy resumes again after lunch for another 1-1/2 to 3 hours. If your child needs a nap during the day, the team will incorporate one into the schedule. If your child is of school age, school room time will be included in the daily schedule if appropriate. Our team tries to maintain a consistent schedule for your child Monday through Friday, however this may occasionally need to vary.
6. Is there therapy on weekends?
Yes. Your child will receive therapy in the morning and afternoon on Saturdays, although treatment times may vary from the Monday through Friday schedule. The weekend schedule will be delivered to your room on Friday afternoon. To allow time for family visitation or outings, or well-deserved down time, your child will be seen only once for each therapy on Sundays.
7. What is a typical therapy schedule like for my child?
An individualized schedule is developed for each child after the first team meeting. You will receive a copy of this schedule. While we try to be as consistent as possible with the schedule, there are occasions when it will need to change to accommodate other procedures, conferences, or outings for your child. Each child receives at least 3 hours of therapy per day (reduced on Sunday), depending on your child’s needs and level of endurance.
8. Can families and friends observe therapy?
Children are typically seen in the therapy gym without family members or friends present. This practice is based upon the need to protect privacy and decrease distractions.
Family members can expect that the therapists will be available for regular – even daily – updates on progress and status. There will be times when the therapists will welcome family members to be present in the gym to “show off” progress and/or to instruct in exercises or activities.
9. What is a therapeutic community outing?
When your child is stable and strong enough to tolerate being away from the nurses and hospital support for periods of several hours or more, the therapy team will plan a therapeutic community outing (TCO). It is important that the TCO be a fun event, but it is also an opportunity to reinforce therapy goals in the community setting. The aim of the TCO is to facilitate re-entry and independence in the community. The child life specialist will work with the children on the unit to decide on a mutually agreed upon location to spend a morning or afternoon outside of the hospital. Children may decide to see a movie, go to lunch or breakfast, visit the zoo or the Botanical Gardens, or to go to the mall. Most requests can be considered. The Neurorehabilitation Program has a wheelchair accessible van, and drivers who are specially trained and licensed. Therapy and staff members accompany the children with a ratio of at least one staff member for every child. Nurses and respiratory therapists accompany the group as children’s needs dictate.
10. What is a functional trial visit?
When your child is medically stable and after the child has been out of the hospital for an outing with the therapy team (a therapeutic community outing) we encourage a functional trial visit (FTV) in which you take your child on an outing. A FTV provides the family with the experience of caring for their child in the community or home and assisting the child with the transition to home before actual discharge. These outings are designed to provide emotional support and enhancement of the therapeutic treatment program for long-term patients. During the FTV, the parent is responsible for the child. You must have a physician’s order to participate in the outing. You will be given a checklist to complete before the outing, and you will be asked to complete an FTV report when you return. The length of the FTV will be based on your child’s needs and medical status.
11. What are my responsibilities in terms of insurance coverage?
You are responsible for providing accurate information regarding insurance coverage for your child.
12. Where else can I eat besides the cafeteria?
For a fee of $8.00 per tray, family members can take advantage of “Dining on Call”. There are several restaurants in the area from which to choose. Barnes-Jewish Hospital South has a cafeteria available. In addition, the Central West End has several restaurants that are within walking distance. For a complete listing of nearby restaurants, check at the first or second floor information desk.
13. How are beds assigned?
Beds are assigned based on the age, gender, and diagnosis of each individual. Every attempt is made to place children in the most appropriate location based on this information. There may be occasions when you and your child will need to change rooms during your stay in order to accommodate all patient and family needs; however, we try to minimize this disruption.
14. Can I take my child off the unit?
With a few medical exceptions, you are encouraged to enjoy time off of the 12th floor when therapy sessions have ended for the day. Please notify your nurse of your wish to leave this unit. Before a patient leaves the floor, a nurse or other member of the team must provide a “ticket to ride”. The ticket to ride is a simple document which provides basic information if the child needs assistance while away from 12th floor nurses. You and your child might want to visit one of our rooftop gardens (7th and 8th floors), the Center for Families (3rd floor), the cafeteria (lower level), or the gift shop (1st floor). Please remember to check back in with your child's nurse when you return to the room.
15. What type of clothing can be brought in?
Children are encouraged to wear their own clothing from home. Being dressed in comfortable and familiar clothing promotes normalcy for the child and for the family. Since most children are in therapy for a significant portion of the day, we encourage you to bring comfortable, loose-fitting clothing such as sweatpants and sweatshirts. If possible, avoid clothing with a lot of buttons or fasteners. Patients also should have sneakers or rubber- soled shoes, socks, and underwear. You should check with your nurse or therapist to get more specific suggestions, especially before making purchases.
16. Can I bring in food?
Yes, but any food brought in to the hospital must first be approved by nursing based on your child’s diet requirements and restrictions. Some children must have soft or pureed food, and some must have thickened liquids if they have difficulty swallowing. Please keep in mind that storage for food on the neurorehabilitation unit is limited.
Please include the child’s name and the date on any food stored in the refrigerators.
17. Can I decorate my child’s room?
We encourage you to decorate and personalize your child’s room to make him/her feel as comfortable as possible. Please check with your nurse to determine the extent to which you may decorate - children who have a great deal of equipment in use may not have room for many decorations. Also, the hospital is not responsible for the loss of personal property, so keep in mind the possibility of loss or theft when leaving belongings in the room. Please label belongings with your child’s name. Any electrical items must be approved by our engineering department.
18. What items are not allowed in the hospital?
Alcohol, street drugs and weapons are not allowed in the hospital.
We request your help in creating a safe and comfortable environment for the children staying on the 12th floor. Please do not bring music or movies with adult themes and profanity to the unit.
19. Who should I go to if I have questions?
Any member of the neurorehabilitation team should be able to answer any questions you have about the plan of treatment for your child. However, each child has a case manager, who is a member of the therapy team. The case manager will provide your first introduction to the rehab process and she will assume responsibility for disseminating information throughout the rehab stay. You will have a formal meeting with your attending physician and your multidisciplinary team on a regular basis of at least every other week. The team conference is on Thursday afternoon. If you or any family members are not able to attend, we can communicate via conference call.