Your child will need to spend some time in hospital to treat and manage their intestinal failure. While they are in hospital, they may experience various changes, such as a move to a different ward or clinic, changes to their health-care team and changes to their daily routines. Below are some general tips to care for your child and for yourself as you navigate these transitions.
- Connect regularly with your health-care team to discuss progress and goals.
- Set realistic expectations about how long your child will be admitted to the hospital and planning for discharge.
- Work with your bedside nurse and Child Life therapist to establish a routine for yourself and your child.
- Learn what resources are available in the hospital and nearby.
- Before discharge, establish expectations for follow-up and ensure you have contact information for your health-care team.
Transitions
Your family will experience many transitions during your child’s time in the hospital and when preparing to return home from the hospital. The following are recommendations to support yourself and your child while continuing to meet your child’s developmental, social, self-care, education and medical needs through these transitions.
Transitions within the hospital
- If your child will be moving to a different ward or clinic within the hospital, discuss the anticipated move with your health-care team and criteria to move, such as weight and oxygen needs.
- Tour the receiving area of the new ward or clinic.
- Review the daily routine of the new ward or clinic.
- Meet with your new health-care team if it is changing.
Developmental/physical
- Encourage play time while your child is at the hospital. Connect with your Child Life Services therapist to find out ways you can play with your child to promote development.
- Connect with your physiotherapist and occupational therapist if you have concerns about your child’s development while they are in the hospital.
Social/emotional
- It is very important that your child develops a healthy attachment to primary caregivers. Recognize the important role you play in caring for your child and view yourself as a primary caregiver. Engaging in daily care fosters connection.
- It is common for children to regress developmentally and emotionally during an admission. Children may need additional nurturing and support. Speak to your health-care team if you feel you need support for yourself or your child.
Self-care
- Explore supports at home and in your community
- Take frequent breaks — self-care is important.
- Explore resources that may facilitate you keeping home routines (e.g., home-cooked meals, exercise, meditation).
- Find out if you can access volunteer resources that can support you while in hospital.
- Time away from the hospital is important for mental health. Discuss with your health-care team what times it would be appropriate to leave the bedside while still allowing bonding with your child.
Education
- When transitioning to a new floor or unit, request a tour to get familiar with the facilities and practices of the new area.
- Understand goals for next stages (i.e., goals for discharge and teaching needs, such as a G-tube class or diet teaching).
- Work with your health-care team to identify developmental goals for your child and how to support normal development in hospital.
- Be active in your child’s care as this will help you to be more comfortable with care at discharge.
- If your child is school age, discuss virtual learning opportunities with your health-care team.
Medication
- Know what medications your child is on and, if possible, bring in any medications your child was taking at home (e.g., creams, inhalers, vitamins).
- When preparing for discharge, ensure you have an updated medication list and supplies to administer (e.g., pill crusher, pill splitter).
- If there is concern around funding for medication, discuss this early with your social worker or health-care team to determine supports that may be available.
- Note that formulations of medications given in hospital may be different from what is dispensed from the outpatient pharmacy. Pick up your medications prior to discharge and review them with the pharmacist or your health-care team.
Transitions from hospital to home
- Review goals for readiness to transition home.
- Discuss your child’s specific care needs and the home environment required to accommodate these needs with your health-care team.
- Complete any required training to provide care for your child.
- Organize and arrange your home space to accommodate for child’s medical needs.
- If there are concerns about funding for medication or equipment, meet with a social worker. A social worker can help you find support.