They just wanted to go home. But there was no home to go to, and that broke Laura Moore's heart.
Day in and out, she changed these children's trachs and colostomy bags. She bathed them. She read to them. She listened to them cry. She kissed them when she finished her shift and went home to her own family.
"They would look at me and say, 'please take me with you.' They had no family, no friends, no home - and no hope," Moore said. "I had one patient (a teenager, severely injured in a car crash) who begged me to turn off his life support."
Sometimes it was more than she could take. Moore knew that many nurses felt the same way, avoiding working on this floor, because it was so demoralizing to see the kids.
"I realized that these beautiful children - who were on the [neurological] floor because of accident, illness and abuse and who were saved by incredible feats of technology - were then left with lives dependent on that technology. [Their] care required knowledge of that technology to sustain their life," Moore said.
For different reasons, caring for these children often proved insurmountable for their parents or family who abandoned them.
"I was stunned by the numbers of families who didn't want to deal with it," Moore said. Other children were products of an abusive home situation and were permanently in state custody.
She also saw the problems with limited training options for foster-care families.
"While I was at the hospital, four of the [homeless] children were placed in a home; and all four died within the first 12 months of placement."
She doesn't attribute their deaths to abuse, but to the fact that the families weren't prepared or didn't have the resources to support themselves or to obtain the guidance needed to care for the child.
"It's not enough to get these kids out [of the hospitals] and put them in a 'dream house' - that's a Band-Aid approach. They need a permanent home and their families need to be trained to care for them," Moore said.
Moore knew she needed more than just a nursinghome environment for these children. She wanted a real home environment, balanced with effective care and education that would prepare both the child and the adoptive family for living in the "real" world.
She prayed a lot. And with the blessings of her husband and her own family (she has two teenage children), she took a leave of absence from her job at Children's Healthcare of Atlanta and began shaping her dream into a brick-and-mortar reality. (She has since left her job there to pursue the project fulltime.)
She went to her church, Mountain Park United Methodist, and enlisted volunteers. In 2001, she incorporated into a nonprofit, Dream House for Medically Fragile Children, got a board of directors and began explaining her mission to anyone who would listen.
"These children need a home - not an institution," she said, over and over again.
Moore's family and friends pitched in. Her background in nursing education (she holds a master's degree) was helpful when she wrote grant proposals.
The Moores sold their own home and bought a contemporary-style house on more than two acres in Lilburn. It soon became Dream House central. With donations of time, talent and money from community volunteers, the renovations to the home slowly became a reality. Bowen Homes donated much of the labor and materials. Boy Scout and Girl Scout troops, senior citizens and corporate volunteers pitched in. Others donated medical supplies and bedding.
When it's completed later this month, the house will accomodate six medically fragile children. The Georgia Divison of Family and Children Services approved the home for up to eight children.
Once completed, the 3,500-square-foot renovation will have four bedrooms for children and two bedrooms for adoptive or foster families to live in while they learn how to care for their child; a classroom, an art and music therapy room, plus bath and shower facilities adapted to the needs of paralyzed children. An elevator takes children downstairs to a play therapy room. A handicap ramp criss-crosses the front of the house.
In the back yard, an accessible walkway created by senior volunteers meanders through the property to a "secret garden." A memories pathway, made from bricks engraved with donor's names, is taking shape behind the house. There's also a pool for water therapy.
Including the child's family in the living arrangements - or in most cases, the adoptive family - is crucial to Moore's vision of helping create an effective environment where families can learn the skills they need to care for these children in their own homes. Her own family will be among the first foster families to care for a child.
According to Moore, about 800 medically fragile children are living in hospitals in Georgia - 300 in metro Atlanta.
Her goal is to establish more therapeutic foster homes throughout metro Atlanta and eventually the state. She has networked with programs that already provide training and support services.
Creating a supportive environment is key to her mission to build these homes. "The government can't fix this. The answer isn't in building more institutions," Moore said.
The challenge, she said, is to "increase the community awareness about the desperate plight of these children and create partnerships that provide resources to grant the quality of life every child deserves."
For information on the Dream House for Medically Fragile Children, contact Moore at 770-717-7410, or see www.dreamhouseforkids.org.