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>> IN THE PERIOD BETWEEN THE FIRST AND SECOND STAGE
OPERATIONS, BABIES CONTINUE TO BE AT RISK
FOR COMPLICATIONS, EVEN DEATH.
WHEN JASON HAD HIS SURGERIES,
HIS FAMILY COULD ONLY WATCH AND WAIT.
NOT SO FOR STOSH.
>> OVER THE LAST SEVERAL YEARS,
THERE'S BEEN AN EFFORT ACROSS THE CENTERS THAT LOOK
AFTER THESE CHILDREN TO TRY TO MAKE A DIFFERENCE
AND TRY TO PREVENT THAT SORT OF PROBLEM.
>> WE'RE PART OF A NATIONAL COLLABORATIVE EFFORT
TO BEGIN TO TEASE OUT THE VARIABLES THAT MAY INFLUENCE
OUTCOMES IN THE VERY FIRST FEW MONTHS OF LIFE.
OUR INFANT SINGLE VENTRICLE MONITORING PROGRAM HAS BEEN
ESTABLISHED IN ORDER TO PERFORM REGULAR ASSESSMENTS
AND COLLECT DATA OF THESE PATIENTS TO SHARE IT WITH
OTHER CENTERS SO THAT WE CAN LOOK AT WHAT FACTORS
INFLUENCE HOW THESE PATIENTS ARE GOING TO DO IN THEIR
VERY FIRST EARLY DAYS OF LIFE.
>> FAMILIES ARE DISCHARGED WITH A SCALE SO THAT THEY
CAN WEIGH THEIR BABY AT HOME.
THEY'RE DISCHARGED WITH A PULSE OX SO THAT THEY CAN
MEASURE THEIR BABY'S OXYGEN SATURATION AT HOME.
AND THEN THEY ARE SEEN BY THEIR PEDIATRICIAN
AND BY THEIR CARDIOLOGIST WEEKLY, ALTERNATING,
SO THAT EVERY WEEK YOU'RE BEING SEEN BY A PHYSICIAN,
EITHER THE PEDIATRICIAN OR THE CARDIOLOGIST.
>> AND YOU HAVE THE NURSE PRACTITIONER THAT CALLS YOU
WEEKLY, KEEPING TABS ON, YOU KNOW,
HIS WEIGHT, HIS PULSE OX, HIS OXYGEN LEVELS,
AS WELL AS FOLLOWS YOU TO EACH OF YOUR APPOINTMENTS.
AND SHE'S THE GO-TO PERSON WITH EVERYTHING.
SO YOU HAVE THAT CONTACT PERSON AND IT'S SO HELPFUL.
IT'S SO REASSURING TO HAVE HER.