IMPROVING INTERSTAGE GROWTH IN SINGLE VENTRICLE HEART DEFECTSKristi Fogg MS, RD, LD, CNSC

Pediatric Cardiology Dietitian

Sodexo/MUSC Children’s Hospital

OBJECTIVES

Understand factors contributing to growth failure in infants with Hypoplastic Left Heart Syndrome (HLHS)

Discuss the National Pediatric Cardiology Quality Improvement Collaboration (NPC QIC)

Identifying the role of the dietitian as a member of the care team

Review the components of MUSC’s Interstage Growth Monitoring Pilot Program

Show the role of technology in improving communication with parents and care teams

ANATOMY OF THE SINGLE VENTRICLE HEART

SURGICAL PATHWAY

Week 1-2 of life Norwood Procedure Hybrid, central shunt

6-10 months BiDirectional Glenn

3-4 years old Fontan

GROWTH FAILURE IN HLHS

Poor prenatal growth (IUGR) Inability to feed preoperatively Slow progression of feedings post op Poor intestinal perfusion, NEC Reflux Oral Aversion Fluid Restriction Chromosomal abnormalities

Trisomy 21, 18; Turners syndrome, Digeorge Syndrome Other non cardiac malformations

Cleft lip/palate, imporforate anus, gut malrotation

NATIONAL PEDIATRIC CARDIOLOGY QUALITY IMPROVEMENT COLLABORATION

NPC-QIC Mission

Improve care and outcomes of infants with HLHS during the 4-6 month outpatient interstage period between surgeries Improving interstage growth Reducing readmissions due to major adverse events Improving communication and care coordination with the family,

referring cardiologists, and primary care clinic

Includes 42 pediatric cardiology centers Physicians, CT Surgery, NP’s, Dietitians, Speech Therapists

Parental Involvement

NPC QIC INVOLVEMENT

Learning Sessions (2x Year) Monthly Action Calls (MUSC presenting on 4 calls)

Working calls focused on Growth, Care transitions, discharge planning and emerging literature

PDSA Presentations Story Boards

Data Entry and Data Sharing Access to shared drive

LEARNING SESSION: JUNE 2012

Focus on Growth Failure Current growth trends between institutions Implementation of feeding protocols Engaging your RD Major red flag events Growth bundles Care transitions

DIETITIAN INVOLVEMENT

Goal: Dedicated Dietitian to Pediatric Cardiology Department to improve growth and reduce mortality Updated nutrition care plan Coordination of care w/ outlying facilities and families Phone availability when not physically present

93% Patients had dietitian available inpatient 69% had dietitian available as an OP

12% routine with clinic visit 57 % consulted as needed

CURRENT SUCCESSFUL INTERVENTIONS

MUSC QI IN INTERSTAGE GROWTH

INTRODUCTION OF GROWTH BUNDLE

Established Feeding Protocol After Hours TPN Establishing Interdisciplinary team

Addition of pharmacist and dietitan Participation in rounding, care coordination, QI

Non statistical significant improvement

LACTOENGINEERING

Hindmilk 5 minute separation of foremilk Evaluation of composite milk and hindmilk Ranging 25-33 cal/oz Eliminates need for fortification

Skim Breastmilk For patients with chylous effusions Requires supplementation with MCT based formula, ADEK

MVI

INTERSTAGE MONITORING

In the interstage, this is an extremely vulnerable time with a significant incidence of growth impairment, re-hospitilization, myocardial dysfunction and death

Implement an interstage growth surveillance program that performs outpatient growth, feeding, and nutrition monitoring between Norwood and Glenn surgery.

Develop and promote an interprofessional collaboration to reduce interstage growth failure

INTERSTAGE MONITORING PROGRAM

IP Grant ($15,000) Fosters an environment that rewards innovative and

integrated education, research and patient care. Scales, Pulse ox monitors, educational binders, Learning

sessions for NPC, Peapod maintenance Why is MUSC unique?

NO ONE is excluded Technology Interaction with outlying facilities Funding

INCLUSION CRITERIA

Neonates requiring surgical shunt placement, PA banding, Norwood procedure, or hybrid procedure for single ventricle anatomy

Once transferred to the stepdown unit, parents are consented and education is initiated

Discharge Teaching Started Discharge Educational Binder Use of Pulse Ox, Infant Scale Formula Preparation Red Flag Action Plan Use of Google Voice Correspondence

Peapod Measurement

PEAPOD MEASUREMENT

Body Mass Measurement Measured oxygen consumption, CO2 expelled, BSA

Infants and Body Mass Long term correlation with chronic disease Possible use in anesthesia Leaner babies have higher BMR Correlation in Cardiac Babies?

PEAPOD MEASUREMENT

WEIGHT MONITORING AND SAT MONITORING

Decrease interstage mortality Earlier feeding interventions Triaging red flag action plans Improved detection of important residual/recurrent

lesions and improved survival Avoiding unnecessary ER visits Earlier operative intervention

RED ACTION PLAN

O2

Saturations

≥ 70% and < 90%

Continue current therapy -Medical evaluation

- Respiratory distress? - Decreasing PO intake or increasing fatigue? - Changes in skin color or perfusion? - Poor weight gain?

≥ 90% < 70%

NO YES

Inadequate Weight Gain

30 gram weight loss in 24 hours

Less than 20 gram weight gain over 3 days

Has achieved goal calories of 110-150 cal/kg/day

- Signs of aspiration? - Respiratory distress? - Weak cry? - Emesis? - Diarrhea? - Bloody stools? - Decreasing PO intake or increasing fatigue? - Changes in skin color or perfusion?

- Medical evaluation - Possible inpatient admission

- Review feeding regimen - Review formula recipe/mixing - Daily weight reporting until consistent weight gain x 3 days

- Increase volume of feedings OR increase caloric density - Daily weight reporting until consistent weight gain x 3 days

- Is formula preparation correct? - Are weights being properly performed?

Signs of acute illness present

YES NO NO

YES

YES

NO YES

NO

USE OF TECHNOLOGY

Parents communicate daily using google voice Text/Call to adjust feedings or address red action plan Data entered into shared drive Weekly Rounding BiMonthly progress report to pediatrician and

cardiologist

GOOGLE VOICE FOR PARENTAL COMMUNICATION

Free! Need Google account Assigned local number Texting/Voicemail Voicemail Transcription Able to re-route to

multiple phones Allow on call schedule

GOOGLE VOICE

date weightgrowth x 7d sat growth regimen

1-Aug 4.51 27 8675 ml over 1hr, Alimentum 27 cal/oz. Going up 1ml at a time, every few days. Takes up to 55 ml at TID feeds

2-Aug 4.5 21 81

3-Aug 4.51 20 84

4-Aug 4.53 20 85

5-Aug 4.55 10 88119 cal/kg/day

6-Aug 4.59 16 85

7-Aug 4.62 18 83

8-Aug 4.67 23 81

9-Aug 4.69 27 8810-

Aug 4.71 29 8511-

Aug 4.73 29 8412-

Aug 4.73 26 8113-

Aug 4.74 21 81@ 77 ml q 3hr, added olive oil, giving 130 cal/kg

1 2 3 4 5 6 7 8 9 10 11 12 134.35

4.44.45

4.54.55

4.64.65

4.74.75

4.8

weight

weight

1 2 3 4 5 6 7 8 9 10 11 12 1376

78

80

82

84

86

88

90

sat

sat

THANK YOU! QUESTIONS????