We are there at the beginning, we can help in the middle

The impetus for home monitoring two decades ago was unrelenting interstage mortality despite marked improvement in survival following stage 1 Norwood palliation. Interstage home monitoring was designed to prevent death through early detection of subtle physiologic changes with the goal of detecting important variances prior to critical deterioration. Since inception, home monitoring has gone through several measurable, iterative changes ranging from vital sign, weight and fluid goals to high-risk clinics, formal engagement of ancillary services in the outpatient setting, adoption of telemedicine capabilities and multicenter collaborations facilitated by National Pediatric Cardiology Quality Improvement Collaborative. Interstage survival 20 years later is markedly improved though with continued center variation despite shared quality improvement processes.

The one intangible contribution is the care continuum provided throughout the high-risk period which includes the early perioperative phase in the ICU, the transitional phase to the inpatient ward and throughout the interstage period (typically outpatient) to stage 2 palliation. Transitioning to home relies primarily on the ward or outpatient cardiologists, nurses, advanced practice providers, dieticians, and therapists after transferring out of the ICU. Cardiac intensivists have not routinely engaged in transitional care and home monitoring, thus fragmenting the care continuum for high-risk and medically complex infants. However, it is in the ICU that the frailty inherent to shunt dependent parallel circulation may first, and repeatedly, become discernable. Important periods of observation include discontinuing vasoactive medications, cessation of opioids/sedatives, transitioning to spontaneous breathing, and feeding. Early perioperative hemodynamics (and regional oximetry) along with physiologic responses to common stressors should inform transitions to enteral medications and feeding practices, and eventual transfer to the ward. The art of managing these high-risk infants is dependent on recognizing patterns of behavior and responses to therapies that may be uniquely influenced by underlying structural, functional and surgical differences. Thus, cardiac intensivists are vital contributors to transitional care, home monitoring, and managing concerns throughout the interstage period. Additionally, cardiac intensivists have direct insight in identifying infants who may be too fragile for interstage discharge. In short, the cardiac intensivist is additive to the comprehensive care for which we all strive. It is imperative that we as cardiac intensivists collaborate with interstage cardiologists, advance practice providers, and ancillary services who will see these infants on the ward and in clinics, to provide insight into developing an understanding of unique physiologic vulnerabilities specific to each infant.

Home monitoring is an important strategy in the care continuum of shunt dependent single ventricle heart disease. Its benefit, however, might be oversimplified as only physiologic surveillance. Advancements in technology and telemedicine have not improved upon the 98% interstage survival achieved by the team that pioneered home monitoring. As an insider to that team, the excellent outcomes were only partially due to application of home monitoring. Importantly, home monitoring was accompanied by implementation of a Single Ventricle Team built on collaboration (within and outside the ICU) between cardiac intensivists, surgeons, cardiologists, anesthesiologists, advanced practice providers, nurses, dieticians, therapists, and parents.

The complexity of this patient population demands the full participation of every specialty team within an institution. It’s important to know the beginning of any story in order to fully understand every subsequent chapter. As cardiac intensivists, we are privileged to help write the first parts of the book of the patient with shunt dependent single ventricle physiology; so therefore, we can help play a role in the rest of the story.