Home monitoring programme for children with hypoplastic left heart syndrome following Stage 1 Norwood or Hybrid Procedure

• Patient suitability for commencement on the HMP is decided by the patient’s named Consultant Cardiologist, and this decision is then to be communicated with the Cardiac Nurse Specialist (CNS) Service, Cardiac Dietitian, Ward Staff and the patient’s parents.
• Patients identified to commence on the HMP should be transferred appropriately to Ward 1E for training to be facilitated; if patient not already placed in 1E.
• HMP training is carried out by a Cardiac Nurse Specialist (CNS) and supported by ward staff.
• The patient is discharged home in possession of user-friendly baby weighing scales, an oxygen saturation monitor and a HMP patient diary containing call criteria.
• Parents are trained in all aspects of the HMP including how to use the equipment provided, how to document the infants HMP data within the diary and call criteria is explained.
• The medication, feeding and home monitoring plans (with specified weight, SaO₂ and feed intake parameters) are signed off prior to discharge.
• The Paediatric Cardiology Dietitian will meet with the parents prior to discharge to discuss feeding and expected growth.
• There is a clear understanding of contact numbers and who to contact.
  • Parents can contact the CNS Service Monday to Friday 8am-4pm on HMP phone 0141 451 5807.
  • Outside office hours, calls are directed to Ward 1E. 

• For feed/growth related questions parents will be given the contact number for the Paediatric Cardiology Dietitian.
• The CNS team contacts the Scottish Ambulance Service with patient’s details to be logged as a priority call out.
• The CNS team enrols the patient on the hospital’s Patient Alert System, identifying him/her as high risk and as a potential candidate for a capillary blood gas and lactate in the event of presentation to the Emergency Department. 
• Prior to discharge home, the CNS team will check if the infant’s local hospital has a Patient Alert System that can identify the child as high risk. They will request that a message is logged advising that if admitted to A&E or hospital consideration should be given to performing a capillary blood gas and lactate and that the infants Cardiologist or the on-call Cardiologist are informed immediately. 
• Discharge is approved only after the parents, Ward 1E nursing staff, CNS and Cardiologist are satisfied HMP training is complete and all discharge criteria met.

• Parents record the patient’s weight every day at the same time and before a feed.
• Parents spot check the patient’s saturation at the same time daily.
• The patient’s weight and saturation are logged in the Diary. 
• Feeds volumes are documented in the Diary.
• There is at least weekly telephone contact with the CNS team and the Paediatric Cardiology Dietitian to review the diary and any concerns.  
• Patient’s hydration is prioritised to assist in shunt protection.
• If patient has a vomiting and diarrhoea illness the CNS team, Dietetics or Medical staff should be notified.
• Notification should also be given to the CNS team of any breach in agreed parameter limits or of any concerns as soon as possible.
• The CNS team are to be notified immediately, either by a parent or health care staff, if the patient presents for medical attention of any nature.

• Resting oxygen saturation drops below 75% (this may be modified following discussion with the named Cardiologist).  Please see actions in Appendix A.
• Resting oxygen saturation is consistently above 90% (this may be modified following discussion with the named Cardiologist).  Please see actions in Appendix A).
• Feed intake <120mL/kg/24hours (please see actions in Appendix B).
• The infant does not gain 20 grams over 3 days (please see actions in AppendixC).
• The infant loses 30 grams or more over 2 days (please see actions in AppendixC).
• Any concerns with the infants breathing pattern.
• Difficulty recording the infant’s oxygen saturations.
• If medical attention is sought, whether primary, secondary or tertiary level.

It must be remembered that each child will have an individually-prescribed set of normal parameters. It is critical that deviation from the norm for a particular patient be associated with a low threshold for early medical review. 

In the first instance this may be at GP (if appropriate), Local Hospital, or RHC.

The Cardiologist, CNS Team and Paediatric Cardiology Dietitian are to be notified of A&E attendance immediately.

• Oxygen saturation, weight and feed intake data will be documented on Heartsuite.
• A weekly summary of the patient’s data will be added to Clinical Portal.
• Feeding Data are logged on Clinical Portal within Dietitian Notes.
• All parental calls for breach of parameter limits or general questions will be documented on Heartsuite and Clinical Portal. 

• All HMP patients are followed routinely in a Cardiology Clinic and are seen when possible by the Consultant and CNS during each visit. 
• HMP Diary reviewed in Clinic.
• Dietetics will review frequently by phone and attend clinics when possible.

CNS to update CNS team and Dietician on a weekly basis, which includes each HMP patient’s weekly data. Any concerns are highlighted. 

The HMP MDT Team meet on a monthly basis as a channel of communication surrounding the HMP patients.

• Adherence to the HMP protocol will be assessed by regular review of patient data available on Heartsuite database and Clinical Portal.
• Audit of the HMP will occur regularly, including the administration of parental satisfaction questionnaires.
• The HMP protocol will be subject to formal annual review, which will be brought forward in the case of evidence to suggest earlier modification is needed.
• Any significant patient event will trigger review of the HMP as it pertains to that patient, to ensure the HMP objectives were achieved in that instance.