Update on Elyse
Shortly after birth, Elyse was diagnosed with chronic intestinal pseudo-obstruction. At 2019 Speak Now for Kids Family Advocacy Day, Elyse advocated on behalf of kids like her and the care she receives from UCLA Mattel Children's Hospital. Below is an update from her mom.
Last August during the first week of the 2019-2020 school year, Elyse was admitted to the hospital for about a week due to complications with her central line. Elyse takes her academics very seriously, and she absolutely hates to miss a day of school.
She also missed another week of school in January 2020 due to a line infection. Elyse recently had major abdominal surgery to relocate an ostomy that was not functioning ideally and to resection some of her bowel.
The surgery was successful, and Elyse is on the road to recovery. She wasn't nervous about the surgery. Instead, Elyse was more concerned with falling behind with her online schoolwork!
We're very fortunate to have great private health coverage through Elyse’s father's job, as well as having Medi-Cal (California's Medicaid program) to cover the cost of things that primary insurance doesn't cover—such as additional hospital costs, co-pays, and supplies.
During the COVID-19 pandemic, we haven’t taken any serious precautions other than Elyse is not allowed to go to stores and no visitors (no aunts, uncles, cousins, or grandparents). Since Elyse has always had a compromised immune system, we are accustomed to taking precautions around other people. Washing our hands is an automatic thing for us. Even face masks are normal in our house because we've always taken Elyse’s vulnerability very seriously. If one of our family members were to contract the virus, we already have a plan to isolate that person inside a camping trailer on our property.
Elyse is well known at UCLA Mattel Children's Hospital. Since many photos of our Family Advocacy Day experience, were posted to the hospital's social media page, Elyse's nurses and doctors mention her trip to Washington, D.C., whenever they see her.
UCLA Mattel Children's Hospital holds a very dear place in Elyse’s heart. To her, it’s a place where Elyse feels safe--she even calls it her "second home." Elyse's life goal is to become a UCLA Bruin. If you ask Elyse about why she stresses so much about her grades, it's because she believes she must have a perfect record to get into UCLA for college.
Elyse is into an app called TikToK, and she loves to do all the dances that are on there. During a recent hospital stay, Elyse taught her nurses how to do TikTok dances--and they filmed them doing the dances together. Many times, you can find Elyse roaming the halls on the peds floor talking and joking around with the nurses, There even have been times when the charge nurse lets Elyse be the assistant for the day.
It’s always a serious thing when your child goes into the hospital. But with Elyse, she has a way to find the silver lining in the experience--such as make up a game or create some cool art in the playroom. Our family strives to keep a positive attitude toward her medical condition. It's something we've worked to instill in Elyse from a very young age, and I'm glad this approach has helped her through these years.
You're encouraged to read more about Elyse from when she participated at 2019 Speak Now for Kids Family Advocacy Day.