Frequently Asked Questions

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. The first family conference usually occurs within a week of admission to the program. The average length of stay for most of our patients is three to six weeks but could range from one to 12 weeks. The discharge date may be revised based on your child’s needs and progress.

Parents and grandparents are welcome 24 hours a day; other guests may visit between 9 a.m.–9 p.m. Please refer to our current visiting guidelines for additional information. If there are guests you do not wish to visit with your child, please notify your nurse so that staff can be informed of your preference.

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.

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.

While each child’s day will be slightly different, there are several similarities. After breakfast, therapy begins around 9 a.m. and may last 1.5 to 3 hours depending on your child’s needs and tolerance. Therapy resumes after lunch for another 1.5 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–Friday, however this may occasionally need to vary.

Yes. Your child will receive therapy over the weekend on either Saturday or Sunday. The weekend schedule is established on the Friday prior to the weekend. We try to avoid scheduling therapy on Sundays to allow your child some well deserved downtime. Additionally, we encourage your child to visit with family and participate in family outings. As discharge approaches for your child, and your child is medically stable, we encourage families to embark on a functional trial visit (FTV).

An individualized schedule is developed for each child after their initial evaluation. You will receive a copy of the daily therapy schedule and will be notified of any changes. 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 three hours of therapy per day Monday–Friday, depending on your child’s needs and level of endurance.

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 or to instruct about exercises or activities.

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 reentry and independence in the community. The Child Life specialist works 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.

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 at 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 their 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.

You are responsible for providing accurate information regarding insurance coverage for your child. 

We understand how important meals are when your child is in the hospital. St. Louis Children’s Hospital offers a Caregiver Meal Program:

• Two caregivers per inpatient can eat breakfast and dinner for free, every day by visiting the cafeteria on the lower level
• Meals will be served from 7–10 a.m. and 5–8 p.m.
• Snacks are available in the Center for Families

Located close to the hospital, the Central West End neighborhood has several restaurants that are within walking distance. For a complete listing of nearby restaurants, stop by the 2nd floor Guest Services desk.

Beds are assigned based on the age, gender, and diagnosis of each patient. 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 to accommodate all patient and family needs. However, we try to minimize this disruption.

With a few medical exceptions, you are encouraged to enjoy time off from 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 “hall pass”. The hall pass is a simple document that 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.

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 should also 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.

Yes, but any food brought into 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.

We encourage you to decorate and personalize your child’s room to make them 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.

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.

Any member of the Neurorehabilitation team should be able to answer any questions you have about the treatment plan for your child. Each child has a case manager, who is a member of the therapy team. The case manager will provide your first introduction to the rehabilitation process and will assume responsibility for disseminating information to you throughout your child’s rehab stay. They will have a formal meeting with your attending physician and your multidisciplinary team on a regular basis—typically, every other week. The team conference is on Thursday afternoon. If you or any family members are unable to attend, we can communicate via conference call.