Totally Kids® Specialty Healthcare

Pediatric Subacute Care for Children
who are Medically Fragile and/or Dependent on Technology

Improving Care

Tierra's Journey Home Includes a Subacute Stay

Originally Printed Fall, 1997. Reprinted with permission from SubacuteCare Today©, a Publication of Daedalus Enterprises, Inc., Dallas, TX.

"With the advent of more complex and successful methods of treating traumatic events and premature births in pediatric and neonatal ICUs, long-term survival rates for this population have reached an unprecedented level. But survivors of these events often require long-term and/or complex care -- sometimes for their entire lives. Thus, the families of these children find themselves responsible for gastrostomy tubes, tracheostomy tubes, ventilators, indwelling lines, and assessment -tasks usually reserved for licensed personnel in the intensive care units of tertiary care medical centers.

Challenges like these have created the need for appropriate settings where children can be cared for during the sometimes lengthy process of training the family and preparing the home for the child's return. These are children who require well-trained, qualified medical staff from a variety of disciplines who can maintain the child's stability while assisting both the child and the family in overcoming the psychological traumas that an extended ICU stay can create. The ideal setting will have fewer restrictions than an ICU and allow for a child's need for play and social interaction with family and peers. This setting should also include methods and facilities that encourage family participation in the day-to-day care of the child, allowing them to integrate their child's new needs into the daily routines of parenting while making a realistic assessment of the support structures that will be necessary to make the transition to home safe and comfortable.

All of these needs point to the level of care that has come to be recognized as 'subacute.' This may also be termed 'chronic intensive care' but is currently more readily recognized by government agencies, HMOs, and managed care plans as subacute care.

Recovering from too early a start

One child who has benefited greatly from this level of care is Tierra, the two-year old daughter of Tanya and Tyrone Holloway.

Tierra was born prematurely at Barstow community hospital on December 12, 1995, at 27 weeks gestation and weighing 794 grams. She was intubated and placed on ventilatory support due to immaturity of the pulmonary system, and transferred to the NICU at Loma Linda Children's Hospital. There she was maintained on mechanical ventilation and had a tracheostomy tube placed for long-term ventilation and bronchopulmonary hygiene. Her nutrition was maintained via a nasogastric tube. She received rehabilitation services from occupational, speech and physical therapists.

Tierra resided in the NICU from December 1995 to October 1996 and grew from her original weight to 5,790 grams. At that time, Tierra's physicians felt that she had stabilized and needed to transition to an environment that was less restrictive than an NICU and could offer her a more normal growth experience. "At first we wanted to take her home right away, but the doctors told us she may not make it home." Tanya explains, "so the doctors at the hospital told us a subacute was the only option." Her case managers referred her to Totally Kids® Specialty Healthcare. Totally Kids®, a division of Mountain View Child Care Inc., is a 59-bed subacute facility dedicated to serving the needs of children and adolescents. Tierra was transferred in October 1996. The staff at Totally Kids® constructed an individual care plan, which included consultation by a pediatrician, pediatric intensivist, pediatric physiatrist (a physician specializing in rehabilitation medicine), ear-nose-throat specialist, neurologist, RN's, respiratory care practitioners, occupational therapists, physical therapists, speech, a child-life specialist, social worker, and case management staff - all coordinated by the facility's full-time nurse practitioner in conjunction with Tierra's parents.

Paramount to a successful transition was the resolution of the logistical problems arising from the fact that Tierra's parents lived 115 miles away. Tierra's case manager, Deborah Wilson, RN, BSN, assisted Tyrone in his efforts to arrange for leave from the military by writing letters to Tyrone's commanding officers explaining his daughter's fragile medical condition. The Kids-4-Ever House, a not-for-profit facility located next to the Totally Kids® Healthcare Center, was offered to the couple for a nominal fee, allowing them to stay in the area for several days at a time, decreasing their transportation and lodging costs. This allowed Tanya and Tyrone to maximize the amount of time they could spend with their infant daughter.

Special attention makes the difference

At Totally Kids®, Tierra improved developmentally at a faster pace than in the acute facility. She began to take food orally under the supervision of the speech and occupational therapists and was increasingly responsive to her outside environment. With outside stimulus from the child-life specialist and aides, she also showed increased social activities. The Holloways attribute a large portion of Tierra's remarkable improvement to the level of special attention she has received in this setting. Not only has she had an opportunity to interact with the staff, she has been able to socialize with other children at the facility as well. Far from being the sterile, clinical environment of an ICU, Totally Kids® allows and encourages children to socialize with one another when they can, and children receive lots of individual attention from the staff members. Of course, Tierra's stay has not been without its complications. For a long period, Tierra experienced frequent nausea related to the nasogastric tube. This often resulted in vomiting and dislodgment of the nasogastric tube and, frequently, dislodgment of the tracheostomy tube as well. The nursing staff at the center became increasingly concerned for her well being and related this to her family, recommending placement of a gastrostomy tube.

Multiple meetings were held with the family and the doctors to explain all of the risks, benefits, and alternatives to the gastrostomy tube. Dr. Menaj Shah, the facility's pediatric gastroenterologist, was particularly helpful, spending three hours with Tanya and Tyrone explaining the procedures' benefits and answering questions. After much thought, Tierra's parents consented to the gastrostomy tube placement, which they had been hesitant to agree to while at the Children's Hospital, and the surgery was performed.

Tierra's condition improved dramatically. Her bouts of vomiting decreased, and her incidence of tracheostomy dislodgments dropped as well. She increased her oral food intake and became more social. Without the regular bouts of nausea, her respiratory status also improved.

Ongoing challenges

The level of personal attention that the family has received at Totally Kids® has impacted Tierra's care in many other ways as well. Tyrone Holloway explains that while he and his wife appreciated the clinical expertise of the staff in the acute care setting, the smaller, more relaxed and informal setting of a subacute facility has made them feel more at ease. Tanya welcomes the feedback, she gets from the staff and says, "Everyone here is positive. The staff always reports to me about everything Tierra does." Initially wary of health care personnel, Tyrone has warmed to the idea of getting involved with Tierra's care. Today he assists his wife and the staff with all of Tierra's care-- from gastrostomy tube feedings to tracheostomy tube changes.

A continuing concern for parents of special needs children and pediatric subacute providers alike, however, is the failure of commercial providers to recognize pediatric subacute as a cost-effective transitional level of care. While pediatric subacute care can often supplant a large portion of a child's stay in the ICU or a general acute floor, the process of convincing third-party payors that this level of care is not simply "skilled nursing for kids" is an ongoing challenge.

The Holloways have experienced this challenge first hand. Tierra's care was originally funded by CHAMPUS. But CHAMPUS terminated Tierra's funding based on their determination that she requires only maintenance care. While this determination is under appeal, Tierra's care is being paid for by California's Medicaid program, which is a provision for pediatric subacute care. It is difficult, however, to obtain Medicaid funding for the therapy services Tierra continues to require. While that issue is being resolved, the facility continues to provide full therapy services.

Making good progress

The Holloways believe that communication is the key to providing quality care and keeping families involved their children's care. One way that Totally Kids® strives to keep the lines of communication open is through regular care plan meetings. Upon admission, the multidisciplinary team of professionals develops an individual care plan for each child. These plans are reviewed and revised each quarter and whenever there is significant change in the child's condition or method of treatment, and the families are always invited to participate. While the Holloways enjoy receiving on-going reports from the staff in the hall or in the break room, they appreciate the opportunity to give their input and ask their questions at these formal meetings.

Tierra is progressing well, has grown to a weight of 9,700 grams, and has transitioned from the acute care ventilator that she was on when she arrived at Totally Kids® to a ventilator that can be used in the home. With the care of respiratory therapists and specially trained nursing staff, under the direction of Totally Kids'® pediatric intensivist, Dr. Daved Van Stralen, her respiratory status has improved to the point where she is able to tolerate being off the ventilator for up to six hours a day.

During her time off the ventilator, Tierra is learning how to crawl with the assistance of Oradelle Lizer, the physical therapist. Occupational therapist Sandie Stringer is teaching her fine motor skills via interactive play, and her parents take her for strolls around the grounds and the facility. Hesitant to make eye contact with people in the past, Tierra is now starting to focus on her family and favorite staff, and enjoys her time off the ventilator in the playpen with her favorite toys -- a vast improvement over the days when her favored object of play was a coil of ventilator tubing the staff had made for her to keep her hands away from her tracheostomy tube.

"The best place for her"

The Holloways had originally planned to return home to Virginia after Tyrone's discharge from the service last June. But they have become so comfortable with the care Tierra is receiving at Totally Kids® that they have decided to become residents of California and have relocated to a home near the facility. At this writing in mid-fall (1997), Tanya and Tyrone were planning to take Tierra home in December of 1997, with assistance from a home health agency. Says Tyrone, "Everyone knows her here - all the doctors and the staff. This is the best place for her."