Franciscan Children’s

Kimberly Plante Keefe

Mechanical ventilators are most often coined “life support” and are viewed to be breathing machine that is used on the most critically ill patients. This lifesaving, breath-giving machines are most commonly used in acute intensive care units and emergency departments, but also can be used in long-term care hospitals for patients who can't breathe without the ventilator's help.

Age isn't a discriminatory factor for the need for a mechanical ventilator, however, the smallest population per capita is the pediatric population. There are a number of medical problems that can lead to respiratory failure and the need for an infant/child to use a ventilator chronically. Some examples are:

• Conditions that affect the lungs (extremely premature birth, severe infections, other lung diseases),

• Disease of the muscles and bones that may lead to weak breathing,

• Disease of the nervous system that leads to poor breathing effort or weakness,

• Airways that are narrow or collapse and limit airflow and breathing.

In the acute hospital care settings, the goal is to stabilize these conditions and transfer the child to a subacute facility that supports mechanical ventilators, where they can continue to grow, heal and become well enough to go home. However, these types of subacute care facilities in the United States are hard to find. For example, in the New England area, only one pediatric healthcare facility offers such care to infants -- Franciscan Children’s in Brighton, Massachusetts.

“It not only brings the parents closer and able to bond with their child, but also relieves much of the fear and apprehension the parents experienced while their child was in the NICU/PICU.”

Franciscan Children’s, in 1949 realized the importance and necessity of providing subacute care to the infant and pediatric patient population when they first opened their doors. Shifting the focus from the NICU/PICU hospitalizations, too far beyond that point, investing in the parents and the family. They focused on interventions and support strategies to improve mechanically ventilated patient outcomes and facilitated teaching to the families. This family-integrated method is the best team approach I have ever witnessed.  It not only brings the parents closer and able to bond with their child, but also relieves much of the fear and apprehension the parents experienced while their child was in the NICU/PICU.

The respiratory teaching is provided by respiratory therapists that have specialized in this patient population and mechanical ventilator management. Families have included respiratory care that these professionals perform 24/7 from day one. Besides managing the ventilator with the appropriate settings ordered by the medical provider, the therapist manages the patient’s airway and tracheostomy tubes. By the time the infant/child is ready to transition home, the parents will be educated on how to change a tracheostomy tube and will have performed three independent tracheostomy tube changes and deliver respiratory medications. Respiratory education with parents is done in a slow, step-by-step process. Any care questions parents have are answered in real-time by the providers, respiratory therapists and nurses, and PT/OT speech therapists, who serve as the child’s healthcare experts, teachers, and coaches, but also as cheerleaders who celebrate all of the parents' accomplishments.

After all of the education items have been completed independently by respiratory and nursing, each caregiver is required to do a “trial run” before the child can go home. Before a patient is discharged, two caregivers (a primary and backup) must complete a 48-hour, in-house stay. Each caregiver does this trial run independently from the other. During this stay, they perform all of the care for the child. Staff is there to serve as a backup in case the parent needs assistance, but this stay mocks what it will be like once the patient is discharged. This stay not only tests the caregiver’s skills but also gives the caregiver confidence in their abilities -- which is important to a successful home transition.

Years ago, many of these children on ventilators would not have the option to go home and would have to remain in a hospital or long-term care facility. With advancements in ventilator technology and portability, along with thorough and expert family training, such as the program at Franciscan Children’s, so many more of these children can safely transfer home to their families, which is truly the best place for them.