Support beyond our hospital.

After leaving our hospital, other organizations may offer you and your child additional support and continuity of care. You can ask your child’s care team to add these organizations—along with their contact information—to your care plan so you can follow up when you get home.

You can also ask the Child and Family Life team if they can provide additional information or have other recommendations.

There are numerous advocacy groups and organizations dedicated to supporting parents of pediatric patients.

The role of advocacy organizations is to provide families with a wide range of resources, information, emotional support, and advocacy on behalf of families with children requiring medical care. For example, there are advocacy groups for children with cancer, neurological problems, or other disorders. There are also advocacy groups that support the needs of NICU families.

You can look to an advocacy organization for help obtaining the appropriate accommodations and services from your child’s school. Other organizations can connect families and caregivers with support networks, such as online communities or local support groups, where they can share experiences and receive emotional support.

You can reach out to your care team or to a Child and Family Life team member and ask for a list of advocacy organizations they would recommend.

Connecting Champions is a nonprofit organization that helps kids and young adults with cancer envision life beyond their illness where they can explore their passions and reclaim their identity. They facilitate this by pairing kids with a volunteer mentor who has shared passions. Through in-person and virtual friendship programs, Connecting Champions has paired 3- to 26-year-olds with mentors from 100+ career paths, such as fashion design, robotics, and zoology. Mentors visit kids on a weekly to monthly basis. This evidence-based, outcomes-driven approach helps children and young adults developmentally, psychosocially, and physically.

You can reach out to a Child and Family Life team member and ask if Connecting Champions can help find your child a mentor.

The Children’s Healing Center is a squeaky clean play space in Grand Rapids area created for infants through young adults aged 26 who’ve been diagnosed with diseases that leave them more vulnerable to illness than their peers. If your child is healing from cancer, an organ transplant, an autoimmune disorder, or another immune-compromising condition, you can seek a free membership for your child to use this high-quality, hospital-grade environment for play. Children’s Healing Center includes opportunities like an exploratory play area, an active fitness space, a tech zone, and art and learning room.

If interested, a Child and Family Life team member can give you more information.

When inpatient hospital care ends, sometimes ongoing care is transferred to another environment. For example, your child may go to a specialty care facility or to a rehabilitation facility. A transitional facility has been shown to greatly improve a patient’s recovery.

Naturally, this transition could make you feel stress and anxiety, and that’s understandable. Your child’s care team will go through the differences in each of the facilities, helping you understand the type of care that is most appropriate for your child’s needs and preferences.

Parents who’ve had their child in a pediatric hospital before are happy to share their helpful tips and strategic “hacks” with other parents. They have faced similar circumstances and navigated the same challenges. Here are some general tips that parents have shared.

Parents often advise each other to keep an online journal or notebook to track medications, symptoms, and doctor's appointments. This can help to provide updated and accurate information to all the different health care providers involved.

If a Child and Family Life Specialist is not available, these are other ideas for distracting children. Playing games like "I Spy" or "Let's count how many red things are in this room" is suggested. Blowing bubbles can be a fun, captivating way to distract your child, too. Singing songs, storytelling, or using sensory toys like a stress ball or kinetic sand can help keep little hands occupied. And, of course, some kids already know how to use a tablet or smartphone for playing games or watching videos.

Parents have shared creative ways to encourage their child to stay hydrated, like using fun and colorful cups, or cups made with lenticular and holographic designs. These unique cups can reveal an animated image or a message as the liquid is consumed. You could even create a drinking chart to help your child reach their daily drinking goals.