There's No Place Like Home
Ben Thang turns two on November 30. For the first time, he’s expected to celebrate his birthday outside of a hospital.
Ben has spent all but a few months of his life in a hospital because of multiple health issues including pulmonary hypertension, having a tracheostomy and feeding tube, and Down syndrome. He requires around the clock care.
His family, including 5-year-old sister, Frieda, are refugees from Myanmar in Southeast Asia, who came to East Moline, Illinois, three years ago and speak Hakha Chin, their native language. Ben was born after they arrived in the United States. Because of a shortage of in-home shift nurses, coupled with the language barrier, Ben’s family struggles to find the care he needs.
“Everything is difficult in terms of using the oxygen and all of the other things that he has to have to survive,” said Mercy Zathang, who serves as translator for her cousin’s family – dad, Thaluai, and mom, Tuan. Like most parents, they want to do what’s best for their son and worry about meeting his special needs.
In early October, Ben Thang became the first child admitted to Almost Home Kids at OSF HealthCare Children’s Hospital of Illinois in Peoria.
The home is a bridge between hospital and home which provide community-based transitional care in a home-like setting for children from newborns to 22-years old with complex health needs, training for their families, and respite care. Children receive 24-hour medical and nursing support from skilled pediatric nurses.
In just a few short weeks, the staff has already seen a difference in Ben.
“I got to see him in the hospital and here and I feel like here he is more thriving, he's up, he's getting moving, he’s interacting with toys and people and he's really social. So I'm even learning more things about Ben here than I knew when I was in the hospital and had seen him,” said Cristol Klicker, Licensed Social Worker for Almost Home Kids at OSF HealthCare Children’s Hospital of Illinois.
Almost Home Kids at OSF Children’s Hospital is just the third facility of its kind in the nation, and the first one purpose-built. It looks like a house with community living spaces which allow typical, family interactions. Ben’s family is already working on rebuilding the bond with their son that was lost in a clinical, hospital setting.
It’s not unusual to find staff on the floor playing with siblings or working with a child staying in the home. The goal is to further expand those opportunities in the coming months.
The need for such a transitional care facility is great. Requests for care have been coming in from throughout the state of Illinois and beyond.
“Families are going to be able to go through this with support and help from other people in the community and they won't feel alone in this. We're going to offer so many great things to families that come here, so whether it be emotional support or medical support, or training. A major goal here is for training, so we're going to offer that - whatever they need, they can come and let us know and we have somebody who's going to be willing to help them,” explained Klicker.
“Because of this home, she can sleep at night, you know, peacefully and she doesn't have to worry about what will happen to Ben. Also, here is all of the nurses, taking care of him. At home - she's not a nurse and she doesn't know anything. Here they have nurses that take care of him and all of their stress and all of their pain is relieved and they can enjoy, you know, the moment,” add Mercy, when asked what the Almost Home Kids location means for Ben’s family.
Almost Home Kids at OSF Children’s Hospital of Illinois will be able to accommodate 12 children with a maximum length of stay of 120 days. Respite care is offered from 24-hours to two weeks.
Learn more, including what volunteer opportunities there are for community members, here.