Caring for your child when they get home from hospital will take a lot of time and energy. If you have other children at home you may need extra help. Think about the following questions:
- Who will be caring for your child when they come home?
- Will you or a helper be able to lift or carry your child from the bed to a chair or the toilet if needed?
- Do you have family or friends who will be able to help you if needed? You may need help with things like grocery shopping, cleaning, and laundry.
- Are there community supports that you can access, and funding available? For example, in Ontario, there are the Community Care Access Centre (CCAC), Special Services at Home (SSAH), and the Assistant for Children with Severe Disabilities (ACSD) program. Similar types of support may be available in your area.
Your child’s daily routine and activities
In the first two weeks, your child may be tired and need to take a nap in the daytime.
The treatment team will let you know when your child can return to school. They might begin by going to school for half a day. If they need to be out of school for more than two weeks, they may need home instruction, where the school sends someone to your home to help your child keep up with their school work.
The treatment team will also tell you when they can begin activities such as sports again.
Your child may be working with a physical/occupational therapist, and may need to do exercises to help improve their physical abilities.
It is important for your child to eat a healthy diet. It will help them get better and become strong. This is especially important if they need to have more treatments, such as chemotherapy.
Once your child is at home, have a family meeting with siblings to talk about what will be the same and what will be different. Talk about the new rules for play and safety. Indicate what is acceptable, and what you don’t want to see.
Medications
Your child may need medications to control pain, reduce swelling, and possibly also for seizures. Here are some points to keep in mind:
- Get the drugs before you go home. You can get them from the hospital pharmacy or any pharmacy recommended by the treatment team. Your local pharmacy may not have all these medications in stock. It could take several days to order them.
- Make friends with your local pharmacist. They can tell you about the services they offer, and whether they can make drugs for filling future prescriptions. Some medicines are specially made for children.
- If you do not have drug benefits, your discharge planner, social worker, or nurse can help look into drug programs for you.
- Your child may need medical equipment such as a wheelchair, walker, bath bench, or other items. Your child’s nurse, physiotherapist, or discharge planner will help you decide if your child needs any of these items. The discharge planner can give you information about renting any items.
Your health insurance from work may cover the cost for a short time. If not, you may be able to borrow some of these items from local organizations for short periods. If you need them for a long time, you may be able to get funding from some of these organizations.
Getting around your home
There are four main things that can make it difficult when your child comes home from the hospital. Consider the following issues.
- Stairs: Do you have stairs inside your home? Your child may not be able to get up and down the stairs and will need to be carried.
- Location of your child’s bedroom: If your child’s bedroom is not on the main floor, they may not be able to reach it. You may need to set up a bed for your child on the main floor of your home.
- Access to the bathroom: Will your child be able to get to the bathroom easily?
- A referral to home care may be necessary to access your home for safety and obtain equipment such as walkers, wheelchairs, and tub rails.
Baby monitor
Some parents suggest keeping a baby monitor in your child’s room at night to calm your worries. This way they can easily call for you if they need anything while you are sleeping.
Informing local agencies
If your child has complex needs and you live in a small town or rural area, it can be helpful to tell your local hospital’s emergency department, ambulance service, and fire department about your child. These services may keep a list of serious cases so that they are prepared in an emergency. Provide them with important medical information about your child. Keep them regularly updated. Check with your child’s doctor to see if they think this is necessary.
