As parents, we hope our child never has to stay in the hospital. But, injuries happen, as do illnesses, surgeries and procedures that require an extended overnight stay.
If it’s a scheduled surgery or procedure, we may have time to prepare ourselves and our child for what will happen. Or, we may be thrust into a maelstrom of activity, noise, tests, people and anxiety by a sudden onset of illness or injury. Either way, it’s good to know how to advocate for your child’s care and make him or her feel as safe and comfortable as possible.
You’ll want to get up to speed on who is caring for your child, what is being done and why, so that you can explain what’s going on in terms your child can understand. It helps to bring familiar items, such as stuffed animals, to comfort your child. And, if you’re in for a long haul, get help to keep your family and your home going.
A one-time visit can be very different than preparing your child for multiple visits to the hospital.
“We were very matter-of-fact,” Kathleen Thornton says of her daughter, Aisling’s, first admittance to Evergreen Hospital when she was 3. “We thought it would be a one-time visit and be done. We didn’t know what to expect, and so we weren’t traumatized,” the Kirkland mother adds. “We had a very good experience, and there were treats like art projects, stick-on tattoos, bubbles, balloons or Play-Doh – something at every step that might be difficult.”
It turned out that Aisling has a chronic illness and had to spend 48 hours in the hospital every month (although she has just turned 5 and has not had to go for five months). Thornton learned a lot of coping mechanisms to get her and her daughter through the stays. For example, one good technique for Aisling was to bring a big bag of toys and other things she’d never seen before to distract and amuse her.
Most experts, including Nancy Keene and Rachel Prentice, authors of Your Child in the Hospital: A Practical Guide for Parents, advise bringing familiar objects to the hospital to make the child feel safer and more comfortable.
This made a big difference to Tillie Hannah when she was hospitalized at Seattle Children’s at 13 and 17 months of age to have a feeding tube inserted and maintained. “Our nanny brought her whole bed to the hospital – stuffed animals, blankets, pillows. She seemed 100 percent happier with that,” said Rachael Hannah, Tillie’s mom.
Even though Tillie’s first five-day visit was planned, the experience was still a shock for Hannah and her husband. “I thought it would be better than it was,” she remembers. “I envisioned bright, single rooms, and that it would be restful and quiet. But get ready to share a room – for the crampedness, noises 24/7, lots of crying, nurses coming in and out … “
She has advice for other parents coping with a long hospital stay.
“Be prepared for it being so boring. Have friends come with dinner, take shifts with other people. Don’t do it alone; have another adult there as soon as possible to comfort and steady each other.”
Preparing Yourself and Your Child
If you know your child will be hospitalized, the experience will be less stressful if everything can be organized before you go. In Your Child in the Hospital, Keene and Prentice suggest researching the medical procedure ahead of time, arranging for care of other children, arranging for time off work and school, listing people you can call for help and finding out the services the hospital has available.
The Seattle Children’s website lists nine essentials to bring with you, including insurance cards, medical coupons (Medicaid, etc.), court papers, if necessary, lists of prescription and nonprescription medicines your child takes, ATM cards or cash, clothing, play and comfort items, baby needs and car or booster seats.
If the hospitalization is unexpected because of sudden illness or injury, a team coordinator – part of your child’s medical team – will help with contacting the primary doctor, handling insurance and obtaining medical records, says Dr. Michelle Terry, pediatrician and attending physician at Seattle Children’s.
Lorraine Hodgins, nurse educator with Children’s Services at Evergreen Hospital, has a son, Philip, who was hospitalized many times before he was 6 because of a heart ailment.
She has advice for preparing the child for the hospital visit.
“We spent the most time preparing him for tests, like cardiac ultrasounds, telling him what would happen and how it would feel – the gel will feel kind of cold like soap; the machine will take a picture,” she says. “Talk to your child in words they understand, clear and honest. It usually makes the child more comfortable to find out details ahead of time.”
She and others recommend touring the pediatric ward with your child ahead of time, if possible, so that the place is not brand new when he arrives.
Keene and Prentice recommend honesty with the child. “Be realistic,” they say. “If you tell your child that a painful procedure won’t hurt, they won’t believe you the next time.”
Advocating for Your Child
One of the most difficult thing for parents of hospitalized children is the number of professionals involved in their child’s care, Terry says. “Each should identify themselves and explain their role so that the parent can ask questions.”
The medical team includes an attending physician, and – at a teaching hospital like Children’s – a senior resident (in his second or third year of residency) and a couple of pediatric interns (in their first year of residency). One of the interns will usually assume the primary care, under the supervision of the resident and attending physicians. In addition, the team includes a nurse care coordinator (who helps with medical equipment, nutrition, medication and discharge), a social worker and others. A Child Life specialist can be requested to use play to help the child understand procedures and express her feelings and help parents relieve tension and express concerns and fears https://affectivebrain.com/?attachment_id=5774.
At Children’s, a white board in each child’s room lists all of the medical team’s names, along with updated discharge criteria and a place for parents to write questions. “Parents talk to so many people that they lose their train of thought, and writing it down may jog their memory,” Terry notes. Parents attend rounds at their child’s bedside, at which point the medical team talks about overnight concerns, updates and therapies. If a child is in the hospital for more than a week, the parents can ask to schedule a care conference. “It’s a good idea to have other family members or friends come to the conference, so that they can speak for the parents or ask questions if the parent is overwhelmed,” she advises.
Terry says it’s helpful, but not essential, for parents to keep track of procedures and test results. Although they will be given a hand-written summary of their child’s stay in the hospital, and their primary physician will receive a typed transcript, parents can help keep track of things when staff change over to prevent information being lost in the transition, she says.
Hodgins advises close vigilance of what goes on in your child’s room. “Before someone puts hands on your child, they must wash or use alcohol-based cleaner. Before your child is given any medication, you are given the reason it is given and the medication’s name and side effects.”
“Know your child,” Hannah adds. “Arrange in advance what your child needs.” All of the strange medical personnel upset Tillie, and so Hannah arranged for them not to come into the room if it was just to talk to the parents. She also arranged for herself or her husband to stay with their daughter longer than is usually allowed for procedures in order to keep Tillie calmer.
“Parents are never in the way,” Terry says. “They’re their child’s advocate, and so they should call for help whenever they have a question.”
Wenda Reed is a Seattle area health writer.
