In the past 14 years, Alex has had more visits to the hospital than to his local park. Alex’s odyssey resulted in a diagnosis of a rare, progressive, neurodegenerative disorder NEDAMSS or IRF2BPL related disorder. There are fewer than 30 known cases in the world. As a result, his mom, Caroline Cheng-Yiu, has become an expert on how to prepare for overnight hospital visits. Cheng-Liu started the San Diego Undiagnosed Support Group (now CURE—the Complex Undiagnosed Rare and Extraordinary) to share her expertise and help make connections for parents of rare and undiagnosed kids.
Cheng-Yiu recommends packing these essentials in a “grab-and-go bag” for hospital visits:
- Spare set of clothes/socks
- Emergency medications
- Back-up medical equipment for the medically fragile
- Specialty formula/foods
- Portable battery charger for your cell phone
- Extra blankets and sheets
- Your child’s most recent medical summary with current list of medications, doses and times
For longer stays, she suggests personalizing a child’s room with cards and seasonal decorations. She keeps Alex connected to family and school friends through Skype. A daily routine helps keep Alex on track and gives him something to look forward to.
Cheng-Yiu brings a small pocket photo album of her son and printed information on the conditions he has. “By sharing your child’s story, doctors, nurses and therapists learn about your child as a person, not just as a patient,” she says.
Asking questions and establishing rapport is necessary for every parent, as long as the health and security of the child is the center of each discussion. Nancy Keene, an author and mother of a childhood cancer survivor, is no stranger to hospital stays. In her book, Your Child in the Hospital: A Practical Guide for Parents, she suggests families strive for a collegial relationship, where doctors present medical options and parents ask questions and have a stake in the care of their child. This allows doctors to lead with best practices and parents to feel safe that knowledge of their child is being taken into consideration.
Crystal Hasinsky, mom of Justine (Beanie), often fears she will forget to ask about an important topic. Beanie, with 22q 11.2 Deletion Syndrome, is the youngest of four; managing schedules for all of them can be a lot of work. It’s easy for Hasinsky to leave something out.
She asks her doctor, “What do other parents ask that I might be forgetting?” By encouraging the doctor to talk about possible holes in the plan, she learns important tips on how to survive necessary surgeries for Beanie (including heart surgery).
Sometimes Beanie gets anxious about post-operative pain. To keep her calm, Hasinsky brings simple, sanitizable toys and electronics with headphones for longer stays. Travel toys work well—those with attached pieces, such as the Melissa & Doug Flip-to-Win Hangman Travel Game. “The good news is,” she says, “right about the time you start to get bored and antsy, they expect you to be going home.”
Hasinsky learned the difference between the ICU, an intensive, monitoring unit for post-surgery that has a restriction on visitation to keep kids healthy, and the next level of healing care. At Rady Children’s Hospital, it’s called the Acute Care Pavilion (ACP), which allows (registered) adult visitation (when health and safety guidelines permit it) and has pull-out couches for parents to sleep next to their children. In the ACP, kids receive therapies, get visits from therapy animals, and see specialists who instruct how to ease pain as children heal. Nurses have a handful of patients and rotate between rooms; and parents begin to make the transition back to primary caregiver.
Parents traveling from out of area who are not staying with their child can take advantage of family accommodations at nearby Ronald McDonald House (RMH). There are play spaces, movies and games, and a schoolroom. RMH also offers free, nutritious hot meals and showers for parents who sleep in their child’s hospital room. RMH focuses on self-care for caregivers, as parents often forget their own daily tasks while focusing on their child.
It’s natural for families to neglect daily tasks during a time of extreme illness; but parents should do their best to accept help. Here are Keene’s suggestions on ways friends and family can support parents (without imposing) when they have a child in the hospital:
- Provide meals (meal delivery gift cards allow families to choose what they want and when).
- Take care of pets or livestock.
- Mow grass, water plants and tend the garden.
- Clean house and do laundry.
- Shop for groceries (especially when a family is due home from the hospital).
- Invite siblings over for outings and meals and/or drive them to sports or school.
- Donate blood and platelets.
For more information on how to support your child during Rady Children’s Hospital stays, visit www.rchsd.org/patients-visitors/your-childs-hospital-stay.
To access family support for undiagnosed children, visit www.CUREundx.com.
Emily Dolton is a resource specialist and mom of two boys, one with 22q 11.2 Deletion Syndrome.