When Your Child Is in the Hospital
Amanda Connealy will never forget her daughter Olivia’s first hospital stay two years ago. She was admitted following a massive seizure, and the stay lasted just over three months.
“We were scared out of our minds and worried for Olivia, of course,” says Connealy, a Lenexa mom of four. “Every moment was filled with hopeful anticipation for good news, but instead, it seemed like the prognosis just kept getting worse.”
The devastating seizure that her “sweet, quirky” youngster experienced led to a life-altering brain injury called global cerebral hypoxic-ischemic injury.
Diagnosed with intractable epilepsy, Olivia, now 8, continues to battle seizures that refuse to come under control with treatment. She has been hospitalized six times since that initial stay.
Lean on community. Connealy immediately turned to her faith community for support and started a Facebook group called “The Lord Is Her Shepherd.” Through the group, she asks for prayers and keeps concerned family and friends informed. She shares Olivia’s progress and setbacks, as well as her own worries and frustrations.
“Putting what’s running through my mind into words helps to rein in the thoughts that aren’t productive or even accurate,” Connealy says. “The comments people leave on my posts—and I read every single one of them—offer me encouragement and consolation that so often carries me from one moment to the next.”
Manage fears. Although pediatric hospitals focus on creating a welcoming environment for their young patients, it’s normal for kids to feel anxious.
“If they seem scared or worried, ask them about their feelings and provide truthful explanations,” says Missy Stover, CCLS, assistant director of Patient and Family Support Programs, Children’s Mercy Hospital. “Young children sometimes need reassurance that they didn’t do anything wrong to cause their illness.”
Jennifer Sauer, Blue Springs, used a doll that the Children’s Mercy child life team gave to her son Jack, now 4, to help explain upcoming procedures as he awaited a life-saving kidney transplant.
Jack had been undergoing daily dialysis since he was only 1 because of kidney failure.
“His ‘Super Buddy’ doll has a port like him,” Sauer says. “For example, when prepping him for his biopsy surgery, we explained in basic terms what the team would be doing prior to and during his procedure.”
If your youngster is frightened about getting a shot or an IV, Stover suggests putting your child on your lap, practicing deep breathing or playing on an iPad during the procedure.
“Parents can also ask the provider for a topical medicine to numb the skin so the child won’t feel the poke as much,” Stover says.
What to pack. Bring your insurance card, photo ID and method of payment. You’ll also need a list of any medications your child is currently on and immunization records.
For yourself, pack toiletries (including moisturizing hand lotion, shampoo/conditioner), warm socks with rubber bottoms and comfortable clothes.
“Items like a journal, magazines, electronic devices are nice to have on hand as well,” Stover says. “Letting your child choose familiar items from home like a favorite stuffed animal or special activities will help them feel more in control.”
Deb Clem-Buckert’s daughter Jaiden, now 19, went into the hospital for a week in 2014 after she started spitting up blood. Clem-Buckert says Jaiden was eventually diagnosed with Ehlers-Danlos syndrome and superior mesenteric artery syndrome. Since then, hospital stays for the Olathe teen have ranged from several days to weeks at a time.
“It really helps to have as much of home as you can in the hospital—bedding, pillows, towels,” Clem-Buckert says. “We even learned to bring our own toilet paper and tissues.”
Inquire about amenities. Ask health care providers where you can access food and entertainment.
“Pediatric hospitals do a good job of making kids feel comfortable and trying to entertain them with activities and tutoring,” Clem-Buckert says. She also advises asking nurses about available programming and crafts to help your child get involved and pass the time.
She was especially delighted when they discovered an area outside the chapel where they could get fresh air.
Advocate. Because the onslaught of information can be overwhelming, Sauer says she always feels better if another adult loved one or friend is in the room.
“I firmly believe in having more eyes and ears to see and hear things the clinical team may be telling us,” she says.
As the voice for your child, you can also ensure he receives the treatment he needs on time.
“I adore and fully trust the Children’s Mercy Hospital team, but you’re still your child’s only advocate, and he’s in there for a life-saving treatment, so I’m constantly—in a nice way—making sure the meds being administered are correct and on time. Working in a hospital myself may make me a bit more annoying in that way!” laughs Sauer, who works as an executive assistant for a physicians group at Saint Luke’s.
Ask for help. Friends and family are often more than willing to help run errands or sit with your child.
“I always want Jack to have someone he knows and trusts with him at all times—even when I run down to get food,” Sauer says.
Because Sauer’s husband, Geoff, was undergoing surgery himself across town to provide the kidney for Jack’s transplant, he was unable to provide the support he normally would have during their son’s first few days in the hospital. Thankfully, extended family stepped in to help both Geoff in his recovery from surgery and Jennifer as she oversaw Jack’s recovery. Both father and son are doing well!
Try to stay upbeat. “I know it’s scary, but as the parent, try your best to stay calm, comforting and positive,” Sauer says. “You are the biggest factor in trying to set the tone to help put your child at ease, and in turn, that can help you.”
Christa Melnyk Hines is a nationally published freelance writer. She resides in Olathe with her family.
As always, please consult your health care provider with any questions or concerns.