Loneliness, exhaustion, isolation: these are just a few of the side effects of having a loved one in the hospital long-term.

By Maggie O'Neill
Updated: March 22, 2019

Theresa Ybanez was an otherwise healthy little girl when her appendix ruptured in January of 2018, necessitating an emergency surgery.

“She was a very happy, healthy 3-year-old when it all started,” Theresa’s mother Kayla Ybanez tells Health.

The rupture was a result of appendicitis, a condition caused by an inflamed appendix. Once the appendix ruptures, a surgeon must remove it and clean out the patient’s abdominal cavity. Appendicitis is common, affecting one in 20 Americans, but it mostly happens in people ages 10 to 30.

Most patients feel better a few weeks after surgery for appendicitis. But in Theresa's case, doctors noticed that something wasn’t right after the surgery, and her health rapidly declined during the following weeks.

“It all happened very suddenly,” Kayla recalls. “Things started to get scary.”

Theresa had more emergency surgeries, and doctors eventually told Kayla that her daughter might not make it.

Kayla says the memories of her daughter’s health spinning out of control are “still kind of a blur. [Theresa] was often sedated. She wasn’t really talking.”

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But by March, the little girl was out of the woods. Her stability didn’t mean she could leave the hospital, though. Fourteen months to the day after she was first taken to the hospital, Theresa still hasn't been able to spend a night at home with her parents and older brother, Kruz, 6.

After the emergency surgery that saved her from a ruptured appendix, Theresa was moved to Comer Children’s Hospital at the University of Chicago. There have been many ups and downs for her family members during her 14-month hospitalization: treatments that didn’t work and more than 20 surgeries, a bone marrow transplant among them. Kruz was the bone marrow donor, and Kayla says her son’s behavior during that ordeal added an element of normalcy to the situation. “Like any six year old, he didn’t like bloodwork and needles.” But he wanted to help his younger sister.

On top of the constant medical worries, the logistics required to get Theresa the care she needs has added a layer of stress.

“Our family’s been split up the past 14 months—we only really see our son on weekends,” Kayla says. Everyone’s had to make sacrifices. Kruz has had to stay with his grandparents since his sister was hospitalized at the beginning of last year. Nickolas, Kayla’s husband, works a corporate job during the day and comes to the hospital at night. He stays with his daughter overnight, and Kayla stays in her home alone. “For health insurance, he works a normal nine to five,” Kayla explains.

Kayla’s own well-being has taken a hit along the way. “You don’t get much rest. You don’t get to eat much, and, when you do, you have to order out. It’s expensive. I don’t think people realize just how much goes into being a caregiver to a child this sick.”

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Loneliness has also been a hardship. Kayla describes the challenge of connecting with other families in the hospital. Part of the problem stems from the circumstances: having a sick loved one, especially a child, in the hospital can be incredibly distressing. Kayla says: “It’s hard to find people to talk to. It can be isolating.” The families she has met at the hospital have since moved on. “I’ve met families who, thankfully, their kids have gotten better quicker. We’ve been the longest-timer, at least on our floor.”

Perhaps the most frustrating aspect of this for Kayla has been the uncertainty surrounding her daughter’s illness. Theresa has an undiagnosed immune disease. Kayla said: “I guess the scariest part is: we still don’t know a solid diagnosis.”

But for now, there seems to be a light at the end of the tunnel. Theresa might be able to go home at the end of this month. The bone marrow transplant that took place in January seems to have been successful, and, from that perspective, Theresa is stable.

Kayla talks about her daughter’s bettering condition, saying, “She can leave her bed and walk. We’re trying to get her to move. It’s an uphill battle trying to get her moving.”

Theresa’s time at home will come with its own set of challenges. She’ll have to come to the hospital three or four times a week and will be monitored constantly. Even though the transplant went well, Theresa’s at risk for becoming seriously ill because of it. Doctors plan to reconstruct her intestines this fall in a series of surgeries.

But things are looking up in time for Theresa’s fifth birthday, which will be in May.

“We’re hopeful,” Kayla says.

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