Accountability Report

Stories...

On a winter morning in early February, he awoke feeling weak. By the next day he couldn’t move his arms and legs. Diagnosed with transverse myelitis, a rare neurological disorder caused by inflammation of the spinal cord, Robert’s life changed overnight. According to the National Institute of Neurological Disorders and Stroke, only 1,400 cases occur annually in the United States.

Admitted to the Legacy Emmanuel Hospital Pediatric Rehabilitation Unit on February 23rd, Robert is making an amazing recovery. Each day, he says, he is regaining mobility in his arms and legs. He is using his hands to write and draw when just a few weeks ago he couldn’t hold a pencil. “I wake up every morning and my fingers aremoving more. It’s like Christmas,” he says.

And each day he keeps up with his studies by attending class with MESD Hospital School Program Teacher Julia Lightell and Educational Assistant Annabella Davis.

A one-desk classroom

On blustery spring day in early April, Robert is once again a normal high school student. It’s just that the learning is taking place in the Hospital School classroom. More like a large office, the classroom has just one worktable and a couple of desks against the wall. It’s the perfect environment for Julia and Annabella to tutor one-on-one with students in a close and comfortable setting.

As Annabella works on a computer a few feet away, Robert and Julia pour over a textbook. They engage in easy conversation. Smiles and laughter flow like water. It’s easy to tell they have a good relationship. While today’s math lesson is not his favorite subject, Robert has a tremendous work ethic that helps him persevere through the lesson in algebra and trigonometry. When it comes to science, Robert is a voracious and self-motivated learner. “Human anatomy, science kind of stuff…I dig that and I love to draw,” he said.

Robert is a funny guy. Like John Stewart funny. Like morning drive time DJ funny. Quips and one-liners spring from his mind like sunshine on a spring day. No one is safe from his wit. He’s got humorous observations on hospital food, physical therapists, his friends back in Aloha, his doctors and his teachers. Some can’t be repeated but it’s all in good fun.

It’s also a great sign to Julia and Annabella.

“Robert is a dream patient,” said Julia. “We get so many kids that are really struggling being here. He is so great with other patients here. A lot of the other kids really look up to Robert because he is a cool guy but he’s also motivated and he
participates.”

Tough to overcome the trauma

Julia says the trauma that accompanies children at Emmanuel, both physical and emotional, can be difficult to overcome. Many kids, she says, don’t take easily to school and therapy. A lot have difficult home situations that are complicated by disease or injury.

“Robert’s got a really great family. He’s got a great mom and dad who are really supportive. Just from my outside observation, I think that probably has a lot to do with his attitude.” For a young man with an irrepressible personality, one would think his current limitations would be an unbearable weight. But it’s just the opposite. Robert has no use for self-pity. He is realistic about the rehabilitation he faces but is also thankful for the prognosis that he may make a nearly complete
recovery.

“Some of the kids have way harder stuff. I saw this one little girl who has the same thing as me and she’s two years old and she’s got a ventilator and she’s trached and I could have had that. And they ask me ‘are you depressed?’ I’m like, are you kidding me? A lot of the kids here have it worse. I have progressed so much. To have a negative outlook too is really not helping.”

A team with different beginnings

Julia and Annabella have worked together for a few years on the second floor of the hospital, but each has taken a different path to get there.

Julia, a Chicago native and graduate of Reed College and Columbia University, discovered her niche in special education while working at a residential hospital for medically fragile children in Manhattan. When she moved back to Portland in 2004, she was looking for a job in a hospital and stumbled upon MESD’s ad for a hospital schoolteacher. Pat Haley, coordinator in the Department of Health and Social Services, jumped at the chance to gain a staff member with her background. Not many teachers, he says, come with experience working in hospital or medical settings. She started at Dornbecher, working in a team of teachers. When the need arose to have a instructional leader at Emmanuel, Pat knew she was the right person for the job.

Annabella, a native of Guatemala, came to the program from a different angle. As the parent of a son with autism, she knew MESD from the perspective of a mother and advocate. She respected the work MESD did with her son and developed a passion for helping children in similar situations. When the opportunity to join the program came, she jumped at the chance. Energetic and vivacious, she says she couldn’t be happier with her job. As Annabella proudly gives a tour of the floor, she describes how all the various components on the rehabilitation unit work together seamlessly. Each professional on the team - neuropsychologists, occupational and physical therapists, recreational and art therapists, social workers, teachers and child life specialists - meet weekly to review each case and make sure their efforts are in synch.

This teamwork is essential. Members of the team treat each child as an individual with different circumstances and medical needs while they coordinate every aspect of treatment, therapy, recreation and education. “Everyone works as a team to ease their (the student’s) transition to whatever is coming up - surgery, chemo, radiation,” said Annabella.

Children stay at the rehab unit anywhere from three weeks to four months. Although the teachers know in advance who is going to be on the floor on any given day, they have to be flexible with their daily schedule. Things can change on a moment’s notice. But the goal always remains the same: get each child back home and back into school.

An emotional rollercoaster

Julia and Annabella find themselves in the midst of an emotional roller coaster each day. Yet they remain resolute and calm, an anchor of stability in a sea of tragedy and dashed hopes or resilience and triumph. “You see kids pass away sometimes. It’s gut wrenching, really emotional, but your also see kids making real progress,” said Julia. “We work with kids who face a lot of fears. It is the team’s job to prepare the children to understand and be ready for what they might face.” Julia says that sometimes they must be the bearers of tough news about the reality of life after a tragic illness. “At the time we are working with kids, they are on the brink of a new reality. Their lives as they once were lived have changed dramatically. The child is not what he once was.”

Easing transition back to home and school is a big part of their job. Sometimes, before the child leaves the hospital, the home may need to be remodeled to become accessible. Since local schools have the ultimate responsibility to take over education, Julia and Annabella help prepare the school to serve the student in their new situation. But above and beyond everything that they do, Julia and Annabella seem to be saying:

We are the part of your day that says there’s a part of you that is healthy, that is normal, that is going to get better. The chance to come to school means the chance to be like other kids.