There’s no place like home – not only for the children, but also for their parents. After four months in Children’s Hospital Central California, little Anthony Thomas still required life-saving care, and yet his doctor knew he was ready to go home. The 2-year-old had fallen from a bunk bed while playing at his cousin’s house, breaking four vertebrae in his neck. The traumatic injury literally took Anthony’s breath away, but Children’s gave him the opportunity to transport the equipment he needed to the familiar comfort of his own home, and still receive the professional care he and his family had benefitted from during his hospital stay. A little known service offered by Children’s made it all possible.
“This is probably one of the best kept secrets about Children’s Hospital,” said Mel Yow, director, Children’s Home Care. “And it shouldn’t be a secret.” The only home healthcare provider in the area devoted exclusively to pediatrics, Children’s Home Care was established in 1995 to improve a child’s health and quality of life by providing essential healthcare in the patient’s own home, without regard to living conditions.
“The home is the best environment for the chronically ill,” said Mary Lou Pease, billing manager at Children’s Home Care. “We set up a miniature hospital in the home and take ‘incredible care’ to another level.”
Children’s Home Care delivers an array of nursing, respiratory care, and infusion services in a 45,000-square-mile area of Central California to the homes of children with chronic illnesses. For families like Anthony’s, Children’s Home Care provides the only alternative to long-term hospitalization.
“We support getting children out of the hospital as soon as possible and back into the home by providing training to families before discharge,” said Denise Russo, clinical services manager at Children’s Home Care. Russo oversees a team of nurses and respiratory care practitioners who, together with Home Care pharmacists and pharmacy technicians, treat approximately 2,000 patients in their homes each year. “Many parents do much better in the home environment,” said Russo. “They feel no control in the hospital. Children’s Home Care allows parents to become as much in control as they can. Being in their home environment decreases the level of anxiety tremendously.”
Tristan Yang, respiratory therapist at Children’s Home Care, has visited Anthony’s home on a regular basis since he was discharged on Sept. 15, 2009. Approximately one month prior to the home visits, Yang began training the family at the Hospital on ventilator operation and tracheostomy care.
“If I didn’t learn how to suction and bag his trach, Anthony would’ve gone to a rehab home,” said Timica Thomas, Anthony’s mother. She shook her head, recalling her initial apprehension. Thomas never hesitated when removing her son’s tracheostomy tube, but she shied away from inserting it out of fear. “I didn’t want to take my son’s breath away,” she said. “Tristan would say, ‘Calm down. You can do it. Take a deep breath.’ He was great.”
With time, patience, and a lot of practice the Thomas family learned how to provide Anthony’s care by the time he was ready for discharge. Yang continued coaching the family with weekly home visits for the first six months. Since then, the respiratory therapist makes the trip to the Thomas’ home once a month. “The time and quality that Home Care puts into what we need means so much to me,” said Thomas. “They’re the best. To be honest, I didn’t expect this. I thought I’d be left here on my own, but it’s not like that at all.”
Most home healthcare providers in our service area avoid offering labor intensive pediatric respiratory service because of the high cost. However, Children’s Home Care currently services approximately 75 ventilator patients. “If we didn’t provide that service, those 75 kids would be in the hospital instead of home,” said Raymond Sotelo, distribution supervisor at Children’s Home Care. Our distribution team works closely with nurses and respiratory therapists, making sure ventilator patients have backup equipment and an emergency surplus of oxygen. On call drivers are available 24/7 for emergencies like equipment failure and lengthy power outages.
In addition to ventilators, Home Care offers delivery and setup of many types of durable medical equipment. “We currently have around 2,500 pieces of equipment in patient homes, either rented or purchased by the family,” said Sotelo. “We provide repairs and maintenance to all equipment, even if the family owns it.”
Home Care also supplies families with portable equipment, which grants chronically ill children the freedom to leave the home environment on occasion. Battery-operated feeding pumps hidden in backpacks allow children on a continual feeding regimen the opportunity to go to school. Portable enteral devices, portable suction machines, and even portable ventilators create as much normalcy as possible. “Home Care helps the parents be mom and dad as much as possible to all their kids, and not just to the patient,” said Russo.
Patients may not require equipment, but they almost always take medication – from chemotherapy injections for oncology patients, to life-saving factor for hemophiliac patients, from medical foods for children with a metabolic diagnosis, to total parenteral nutrition infusions and more. Children’s Home Care has its own pharmacy to meet our patients’ varying needs.
“All our Home Care pharmacists worked at the inpatient pharmacy first,” said Karen Jaramishian, pharmacy supervisor for Home Care. “That gives us a good background and training.” She explained the difference between pharmaceuticals delivered to a patient’s home and those prepared by the inpatient pharmacy at Children’s Hospital. “We dispense them in a ready-to-use format,” said Jaramishian. “Whereas in the Hospital a nurse may prepare the medications before administering them to the patient, ours are prepared here before they go out.”
Hospital nurses not only prepare injections and other forms of medication, but they also provide another set of trained eyes between the pharmacy and the patient. “There are no checks and balances between us and the patient,” said Jaramishian. “So we have to make sure everything is right on our end regarding allergies, dosage, and adverse effects with other medications.”
The Home Care pharmacy keeps extremely busy. As many as 100 packages containing enteral formulas, respiratory supplies, suction supplies, nebulizer supplies, tracheostomy tubes, and more are delivered daily to patients in their homes by a third-party shipper. An additional 30 to 40 deliveries of medications, oxygen, and equipment are made by Home Care drivers every business day. Drivers receive confirmed orders ahead of time, and know exactly what supplies, equipment, and pharmaceuticals go where.
“Our drivers are not just providing a delivery service,” said Sotelo. “They’re knowledgeable and compassionate. They don’t leave the home until everything is tested. We’re very interactive with the family. Simply calling them a ‘driver’ is not an accurate description of what they do.”
Russo agreed. “They’re not ‘drivers’,” she said, wiggling the first two fingers of each hand like quotation marks. “The amount of education they give the families, the relationships they build, the dedication to providing extremely high-quality care, they’re not just making deliveries.”
“They become teachers in the home to these parents challenged with caring for special needs,” said Sotelo. “I’m so proud of our staff,” he said of the drivers he manages. “They are the face of Home Care.”
Sotelo spoke of a mom who had recently gone out of her way to compliment a driver. “I remember her telling me, ‘Whenever I call her, she takes care of me.’”
“Being in pediatrics is different,” said Kevin Coffin, equipment coordinator for Home Care. Coffin came to Children’s from a similar position with an adult hospital. “Pediatric care is more personal,” he said. “The perception is different here. The kids are not just a number to us.”
“The most rewarding thing is going in and seeing the patients,” said Joel Armendariz, distribution coordinator for Home Care. Armendariz remembers hugging a bereaved mom following the death of her child. “We build long-term, personal relationships with patient families,” he said.
Russo arranges for the Home Care nurse familiar with a patient family to visit terminal patients together with the hospice nurse. This protects the family from abruptly adjusting to a new nurse at a critical time. “It’s a great feeling to be able to do that, no matter how heartbreaking it is,” she said.
“You go to the house and you see the way they struggle,” said Yang. “And you share your life with them, too. It helps them trust you.”
“The personal connection sets Children’s Home Care apart from other providers,” said Yow. After 44 years in clinical laboratory administration, (with 24 of them as director of the clinical laboratories at Children's Hospital Central California) Yow was ready to retire. “Then I was asked to fill the director of Home Care position,” he said. “I never thought at 66 years old I’d start a new career.” Yow’s smile indicated he has no regrets regarding his decision. “It’s energizing to come here to work. My goal is that we continue to be an important part of our community, and that we maintain the confidence of Valley families by providing the very best care and by developing personal relationships,” said Yow.
Home Care patient families often show the same level of trust and respect to their Home Care clinician that they give their physician. Yang shared his experience with a family in Tulare who sought his advice on how to approach their child’s treatment regimen. “I told them, ‘I’m not the doctor, you should do what the doctor says,’ but they still wanted to know what I thought they should do.”
“These folks have a high level of pride in what they do,” said Yow of his Home Care team. “And the level of patient commitment is very high.”
“I’ve got staff members who go the extra mile,” said Jaramishian. “If the deliveries have already gone out and a patient calls with a need, my pharmacists will make the delivery on their way home.”
Home Care professionals demonstrate expertise as well as compassion. “Their level of technical competency is awe-inspiring to me,” said Yow of his staff. “I’m incredibly proud to be associated not only with Children’s, but also with Home Care.”
Yow commended his staff for the outstanding – and highly unusual – findings cited at the conclusion of Home Care’s most recent inspection by the California Department of Public Health. Though not expected until late April 2011, two public health inspectors arrived unannounced on a Wednesday in February. They planned to conduct their survey over the next five business days, but completed their work by Friday of that week.
“The inspector sat right there in that chair and said ‘I’m going to write something I’ve never done in my 16 years of inspecting home health,’” said Yow, pointing to the empty chair at the round table in his office. “She said, ’I’m recording there were no findings.’ I credit Denise for that successful survey. She worked diligently since the prior survey three years ago.”
Russo had recently begun managing the clinical staff at Children’s Home Care when the previous survey had taken place, and immediately began addressing the findings from that survey. “I must’ve had five pages of findings,” she said. “And that’s normal. They always find something.” However, this year the inspectors found no deficiencies to report. “It’s very much a shining star for Home Care,” said Russo. “And it wasn’t just because of us. After the last Joint Commission survey, the Hospital embraced Children’s Home Care more than ever before, and that showed in this last state survey.”
The close working relationship between Children's Hospital Central California and Children’s Home Care benefits our patients in a number of ways. “Families come to us because they trust the Hospital and know our standards are the same,” said Russo. “We are employees of the Hospital, an extension with the same level of commitment and expertise. We are the same, with the same goals and vision.”
”Because we’re associated with Children’s Hospital, we work very closely with pediatric subspecialists,” said Yow. “We have a tight working relationship with the doctors providing highly specialized care to our patients.”
Home Care maintains the same computer system as the Hospital. When patients undergo lab work at one of the Hospital’s many practices or clinics, Home Care can check the results and address any changes before sending out a new round of medication.
Physician, nurse, respiratory therapist, social worker, and pharmacist all collaborate to provide the highest level of care. No other home healthcare provider offers this type of access. “It’s unique the way we’re set up to have our Home Care as a part of the Hospital,” said Pease. “Every day’s an exciting challenge. I can’t wait to see what the next day will bring.”
“We impact the community in a large way, in a quiet way,” said Sotelo. “I love working for Children’s Hospital. I truly do believe it’s amazing people and incredible care.”
The Thomas family knows Anthony’s quality of life is better because of Home Care. “Tristan is wonderful,” said Thomas of the respiratory therapist who has become a consistent part of her life. “He’s not allowed to quit. Ever!” she exclaimed with laughter. “Anything that goes wrong, he’s right there. If I have a ‘panic’ he’s always right there. Tristan is like family.”
Thomas described one “panic” she had and how Yang came through for her. “We had given Anthony a drink and he couldn’t breathe,” she said. “Tristan stayed on the line with me until the paramedics arrived. He told me what to do and said Anthony might have a trach infection. And it turns out he did have a trach infection. It was like Tristan knew exactly what was wrong.”
When asked if she would recommend Children’s Home Care, Thomas nodded deliberately and answered with one word. “Always.”