Opération Enfant Soleil

Without the generous support of Opération Enfant Soleil, this amazing website would not have been created. We thank Operation Enfant Soleil for their faith in our team, their patience, and most importantly for seeing children with medical complexity and their families as a priority. Thank you for giving us the opportunity to work together and to build meaningful collaborations.

Children with medical complexity and their families

First and foremost, parents provided the inspiration for this resource. We listened when you told us how differences in recommendation for care at home were distressing. We saw how you so expertly organized care for your child at home. We noticed the care reminder sheets taped up on the wall. We see the fatigue in your eyes. Most of all, we see your love and devotion towards your child; we see the joy you share together. Thank you for helping us build this website; we look forward to your feedback.

Partners in collaboration

Along with families, our main partners for this project were:

CHU Sainte Justine
CHU de Sherbrooke
CHU de Québec-Université Laval
CUSM McGill University Health Centre
Complex Care Service at the Montreal Children’s Hospital
National Program for Home Ventilatory Assistance (NPHVA)
Association Québécoise des Établissements  de Santé et de Services Sociaux (AQESSS)
CIUSSS du Centre-Ouest-de-l’île-de-Montréal

We thank these main partners for their contributions to this resource.

See our history and our methodology to learn more about the creation of this website.

Core development team

While many provided valuable contributions to this project, the core development team invested countless hours in preparing, reviewing and revising content, throughout the website.

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Special thanks

So many experts helped in the development, review and revisions of the materials contained on this website. Your expertise, time and dedication to the care of children with medical complexity is sincerely appreciated.

Project development

Dr Hema Patel
Professor of Pediatrics
Director, Division of General Pediatrics
Director, Complex Care Service and Day Hospital Services [former] Montreal Children’s Hospital, McGill University Health Centre

Ginette Aucoin, Nurse, MSc(A), IBCLC
Conseillère cadre 0-18 ans, Enfance-Famille et Scolaire, Maison Bleue
CIUSSS du Centre-Ouest-de-l’Île-de-Montréal

Dr Marie-Joelle Bergeron
Assistant Professor
Clinical Medical Director, Complex Care Program
CHU Ste Justine

Amélie Bujold, BSc(N)
Conseillère et responsable des Méthodes de soins informatisées
Centre d’expertise en santé de Sherbrooke

Josée Ferland, MSc(N)
Conseillère
Association Québécoise d’établissements de santé et de services sociaux (AQESSS)

Dr Julie Laflamme
Pediatrics and Pediatric Palliative Care
Centre mère-enfant Soleil du CHU de Québec

Dr Sylvie Lafrenaye
Pediatric Intensive Care Specialist, CHUS
Professor, Faculty of Medicine and Health Sciences
University of Sherbrooke, CIUSSS-Estrie CHUS

Sylvie La Perrière, Nurse, BSc, DESS Études multidisciplinaires sur la mort
Conseillère clinicienne en soins infirmiers
CIUSSS du Centre-Ouest-de-l’Île-de-Montréal

Dr Marie Gauthier
Pediatrician (retired)
Centre hospitalier universitaire mère-enfant (CHU Ste-Justine)

Carolyne Roy, Nurse, MSc(N)
Assistant Director, Advanced Nursing Practice and Partner Relations
Professional Development and Support
Ordre des infirmières et infirmiers du Québec (OIIQ)

Rita Troini, MA(Ed)
RRT Training and Development Consultant
National Program for Home Ventilatory Assistance (NPHVA)
McGill University Health Centre

Isabelle St-Sauveur, BSc(N), MSc(M)
Advanced Practice Nurse, Day Hospital Services
Montreal Children’s Hospital
McGill University Health Centre

Administrative and Public relations support

Rosanna Barrafato, BCom
Administrative Technician, Day Hospital Services
Montreal Children’s Hospital, McGill University Health Centre

Josée Della Rocca, CFRE
Director, Partnerships
Montreal Children’s Hospital Foundation

Kim Fraser
Vice-President, Communications, Marketing and Donor Relations
Montreal Children’s Hospital Foundation

Sylvia Saragossi
Medical Secretary, Pediatric Day Hospital Services
Montreal Children’s Hospital
McGill University Health Centre

Web development

Mathieu Breault
Horizon Cumulus

Pascal Carmoni
Xmedias

Emmanuelle Demeules
Horizon Cumulus

Francois Harvey
Horizon Cumulus

Jean Poliquin
Horizon Cumulus

Isabelle St-Cyr, NP student (Primary care), BSc, MSc(N)(A)
Gr Dip Educational Intervention
Clinical Nurse Specialist and Project Coordinator 2013-2015
Montreal Children’s Hospital, McGill University Health Center

Intermittent bladder catheterization

Véronique Adam, Inh, RRT
Training and Development Consultant
National Program for Home Ventilatory Assistance (NPHVA)
McGill University Health Centre

Ginette Aucoin, Nurse, MSc(A), IBCLC
Conseillère cadre 0-18 ans, Enfance-Famille et Scolaire, Maison Bleue
CIUSSS du Centre-Ouest-de-l’Île-de-Montréal

Amélie Bujold, BSc(N)
Conseillère et responsable des Méthodes de soins informatisées
Centre d’expertise en santé de Sherbrooke

Windy Cloutier, Nurse, BSc
Nurse Clinician
Cerebral Palsy Clinic, Spina-bifida/Spinal Malformation Clinic
Centre hospitalier universitaire de Sherbrooke (CHUS)

Clelia Coccia, BSc(N)
Nurse Clinician
Complex Care Service
Montreal Children’s Hospital, McGill University Health Centre

Lina Di Re
Nurse Clinician
Urology and Spina Bifida Clinics
Montreal Children’s Hospital, McGill University Health Centre

Dr Colette Girardin
Pediatric Nephrologist
University of Sherbrooke
CIUSSS – Estrie CHUS

Isabelle Langevin, BSc(N)
Clinical Nurse Educator
CHU Ste-Justine

Louise Lefebvre, BSc(N), MSc(N)
Project Nurse Consultant and Coordinator, 2015-present

Lucie Lévesque, MSc(N)
Advanced Practice Nurse PICU, and Pediatric Surgery, Cardiology and Hemato-oncology
Centre hospitalier universitaire de Québec (CHU de Québec)

Nancy Pâquet, BSc(N)
Nurse Clinician
CHU de Québec – Université Laval

Véronique Pelchat, Nurse, BSc, MBA
Clinical Nurse Specialist
CHU Ste-Justine

Isabelle St-Cyr, NP student (Primary care), BSc, MSc(N)(A)
Gr Dip Educational Intervention
Clinical Nurse Specialist and Project coordinator 2013-2015
Montreal Children’s Hospital, McGill University Health Center

Isabelle St-Sauveur, BSc(N), MSc(N)
Advanced Practice Nurse, Day Hospital Services
Montreal Children’s Hospital, McGill University Health Centre

Enterostomy care

Deborah Abner
Stomatherapist
McGill University Health Centre

Véronique Adam, Inh, RRT
Training and Development Consultant
National Program for Home Ventilatory Assistance (NPHVA)
McGill University Health Centre

Amélie Bujold, BSc(N)
Conseillère et responsable des Méthodes de soins informatisées
Centre d’expertise en santé de Sherbrooke

Karine Charbonneau, BSc(N)
Nursing Consultant, Education
CHU Ste-Justine

Windy Cloutier, Nurse, BSc
Nurse Clinician
Cerebral Palsy Clinic, Spina-bifida/Spinal Malformation Clinic
Centre hospitalier universitaire de Sherbrooke (CHUS)

Caroline Daoust
Nurse clinician, Stomatherapist
Centre hospitalier universitaire mère-enfant (CHU Ste-Justine)

Sylvie La Perrière, Nurse, BSc, DESS Études multidisciplinaires sur la mort
Conseillère clinicienne en soins infirmiers
CIUSSS du Centre-Ouest-de-l’Île-de-Montréal

Linda Massé, RN, MSc(N)(A), LLM, CNCCP(C)
Advanced Practice Nurse, Division of Pediatric Critical Care
Montreal Children’s Hospital, McGill University Health Centre

Chantal Leduc, BSc, Stomatherapist
Nurse Clinician
Centre hospitalier universitaire mère-enfant (CHU Ste-Justine)

Louise Lefebvre, BSc(N), MSc(N)
Project Nurse Consultant and Coordinator, 2015-present

Nancy Pâquet, BSc(N)
Nurse Clinician
CHU de Québec – Université Laval

Véronique Pelchat, Nurse, BSc, MBA
Clinical Nurse Specialist
Centre hospitalier universitaire mère-enfant (CHU Ste-Justine)

Elissa Remmer
Nurse
Montreal Children’s Hospital, McGill University Health Centre

Isabelle St-Cyr, NP student (Primary care), BSc, MSc(N)(A)
Gr Dip Educational Intervention
Clinical Nurse Specialist and Project Coordinator 2013-2015
Montreal Children’s Hospital, McGill University Health Center

Isabelle St-Sauveur, BSc(N), MSc(N)
Advanced Practice Nurse, Day Hospital Services
Montreal Children’s Hospital, McGill University Health Centre

Intravenous antibiotic therapy

Véronique Adam, Inh, RRT
Training and Development Consultant
National Program for Home Ventilatory Assistance (NPHVA)
McGill University Health Centre

Ginette Aucoin, Nurse, MSc(A), IBCLC
Conseillère cadre 0-18 ans, Enfance-Famille et Scolaire, Maison Bleue
CIUSSS du Centre-Ouest-de-l’Île-de-Montréal

Amélie Bujold, BSc(N)
Conseillère et responsable des Méthodes de soins informatisées
Centre d’expertise en santé de Sherbrooke

Josée Chagnon, BSc(N)
Nurse Clinician
Outpatient Intravenous Antibiotic Program
Centre hospitalier universitaire mère-enfant (CHU Ste-Justine)

Karine Charbonneau, BSc(N)
Nursing Consultant, Education
Centre hospitalier universitaire mère-enfant (CHU Ste-Justine)

Annie Chaput, BSc(N), CVAAc
Nurse Case Manager, Complex Care Service
Montreal Children’s Hospital, McGill University Health Centre

Windy Cloutier, Nurse, BSc
Nurse Clinician
Cerebral Palsy Clinic, Spina-bifida/Spinal Malformation Clinic
Centre hospitalier universitaire de Sherbrooke (CHUS)

Dr Sylvie Lafrenaye
Pediatric Intensive Care Specialist, CHUS
Professor, Faculty of Medicine and Health Sciences
University of Sherbrooke, CIUSSS-Estrie CHUS

Sylvie La Perrière, Nurse, BSc, DESS Études multidisciplinaires sur la mort
Conseillère clinicienne en soins infirmiers
CIUSSS du Centre-Ouest-de-l’Île-de-Montréal

Louise Lefebvre, BSc(N), MSc(N)
Project Nurse Consultant and Coordinator, 2015-present

Lucie Lévesque, MSc(N)
Advanced Practice Nurse PICU, and Pediatric Surgery, Cardiology and Hemato-oncology
Centre hospitalier universitaire de Québec (CHU de Québec)

Laurence Normandin, BSc(N)
Nurse, Centre hospitalier universitaire de Sherbrooke (CHUS)

France Paquet, RN, BSc, MSc, CVAA(c), VA-BC™
Nursing Practice Consultant, Vascular Access and Intravenous Therapy
McGill University Health Centre

Nancy Pâquet, BSc(N)
Nurse Clinician
CHU de Québec – Université Laval

Véronique Pelchat, Nurse, BSc, MBA
Clinical Nurse Specialist
Centre hospitalier universitaire mère-enfant (CHU Ste-Justine)

Isabelle St-Sauveur, BSc(N), MSc(N)
Advanced Practice Nurse, Day Hospital Services
Montreal Children’s Hospital, McGill University Health Centre

Parenteral nutrition

Véronique Adam, Inh, RRT
Training and Development Consultant
National Program for Home Ventilatory Assistance (NPHVA)
McGill University Health Centre

Ginette Aucoin, Nurse, MSc(A), IBCLC
Conseillère cadre 0-18 ans, Enfance-Famille et Scolaire, Maison Bleue
CIUSSS du Centre-Ouest-de-l’Île-de-Montréal

Louise Lefebvre, BSc(N), MSc(N)
Project Nurse Consultant and Coordinator, 2015-present

Lucie Lévesque, MSc(N)
Advanced Practice Nurse PICU, and Pediatric Surgery, Cardiology and Hemato-oncology
Centre hospitalier universitaire de Québec (CHU de Québec)

Nancy Pâquet, BSc(N)
Nurse Clinician
CHU de Québec – Université Laval

Véronique Pelchat, nurse, BSc, MBA
Clinical Nurse Specialist
Centre hospitalier universitaire mère-enfant (CHU Ste-Justine)

Géraldine Schaack, RN, BSc Microbiology & Immunology, MSc(N)(A), CVAA(c)
Complex Care Service
Montreal Children’s Hospital, McGill University Health Center

Isabelle St-Sauveur, BSc(N), MSc(N)
Advanced Practice Nurse, Day Hospital Services
Montreal Children’s Hospital, McGill University Health Centre

Respiratory care

Véronique Adam, Inh, RRT
Training and Development Consultant
National Program for Home Ventilatory Assistance (NPHVA)
McGill University Health Centre

Nancy Alarie
Physiotherapist
Montreal Children’s Hospital, McGill University Health Centre

Vincent Ballenas, MSc(A), BScH, Nurse
Nursing Professional Development Educator
Complex Care Service
Montreal Children’s Hospital, McGill University Health Centre

Eloisa Binder
Nurse Clinician
Complex Care Service
Montreal Children’s Hospital, McGill University Health Centre

Joanne Boyer, Inh, RRT
Respiratory Therapy
Montreal Children’s Hospital, McGill University Health Centre

Sylvie Canizares, Nurse
Nurse Case Manager
Complex Care Service
Montreal Children’s Hospital, McGill University Health Centre

Julie Chicoine, Nurse, BSc
Nurse Clinician
Neuromuscular, Neurogenetic, Neurofibromatosis, Pediatric Palliative Care Clinics
CIUSSS de l’Estrie-CHUS

Windy Cloutier, Nurse, BSc
Nurse Clinician
Cerebral Palsy Clinic, Spina-bifida/Spinal Malformation Clinic
Centre hospitalier universitaire de Sherbrooke (CHUS)

Dr Marianne Deschênes
Pediatric Neonatologist
CHU de Québec-Université Laval

Karine Grondin, RRT
Clinical Coordinator, Respiratory Therapy
Centre intégré universitaire de santé et de services sociaux de l’Estrie – Centre hospitalier universitaire de Sherbrooke
Hôpital Fleurimont et Hôtel-Dieu de Sherbrooke

Julie Lavoie, Nurse, SLCR
Respiratory Care Program
CHU Ste-Justine

Louise Lefebvre, BSc(N), MSc(N)
Project Nurse Consultant and Coordinator, 2015-present

Lucie Lévesque, MSc(N)
Advanced Practice Nurse PICU, and Pediatric Surgery, Cardiology and Hemato-oncology
Centre hospitalier universitaire de Québec (CHU de Québec)

Linda Massé, RN, MSc(N)(A), LLM, CNCCP(C)
Advanced Practice Nurse
Division of Pediatric Critical Care
Montreal Children’s Hospital, McGill University Health Centre

Sylvain Morneau, RRT
Professional and Technical Coordinator
Centre hospitalier universitaire mère-enfant (CHU Ste-Justine)

Nancy Pâquet, BSc(N)
Nurse Clinician
CHU de Québec – Université Laval

Véronique Pelchat, Nurse, BSc, MBA
Clinical Nurse Specialist
Centre hospitalier universitaire mère-enfant (CHU Ste-Justine)

ThiDep Phung, Nurse
Network Liaison/Consultation Service
Centre hospitalier universitaire mère-enfant (CHU Ste-Justine)

Isabelle St-Sauveur, BSc(N), MSc(N)
Advanced Practice Nurse
Day Hospital Services
Montreal Children’s Hospital, McGill University Health Centre

Valérie Tétreault, Inh, RRT
Clinical Coordinator
National Program for Home Ventilatory Assistance (NPHVA)
McGill University Health Centre

Dr Julie Tremblay-Roy
Pediatric Intensivist
Centre hospitalier universitaire mère-enfant (CHU Ste-Justine)

Rita Troini, MA(Ed)
RRT Training and Development Consultant
National Program for Home Ventilatory Assistance (NPHVA)
McGill University Health Centre

Sarah Turgeon
Physiotherapist
Montreal Children’s Hospital, McGill University Health Centre

Enteral nutrition

Nadine Vandal, Nurse
Wound and Stoma Care Nurse
Montreal Children’s Hospital, McGill University Health Centre

Marie-Ève Besner, PDt
Registered Dietitian and Professional Coordinator, Clinical Nutrition Department
Montreal Children’s Hospital, McGill University Health Centre

Stéphanie Lesage
General Surgery Educator
Montreal Children’s Hospital, McGill University Health Centre

Soo-Lin Ng, Nurse
Discharge Coordinator
Montreal Children’s Hospital, McGill University Health Centre

Véronique Pelchat, Nurse, BSc, MBA
Clinical Nurse Specialist
Centre hospitalier universitaire mère-enfant (CHU Ste-Justine)

Lucie Lévesque, MSc(N)
Advanced Practice Nurse PICU, and Pediatric Surgery, Cardiology and Hemato-oncology
Centre hospitalier universitaire de Québec (CHU de Québec)

Nancy Pâquet, BSc(N)
Nurse Clinician
CHU de Québec – Université Laval

Julie Chicoine, Nurse, BSc
Nurse Clinician
Neuromuscular (pediatric and adult), Neurogenetic (adult), Neurofibromatosis (pediatric), Pediatric Palliative Care, Pediatric Complex Care Clinics
CIUSSS de l’Estrie-CHUS

Véronique Adam, Inh, RRT
Training and Development Consultant
National Program for Home Ventilatory Assistance (NPHVA)
McGill University Health Centre

Peritoneal dialysis

Sonia Champoux, BSc(N)
Microprogram in Nephrology
Peritoneal Dialysis and Pre-dialysis (Retired)
Montreal Children’s Hospital
McGill University Health Centre

Paule Comtois, BSc(N), CNeph
Pre-dialysis and Peritoneal Dialysis Nurse
Montreal Children’s Hospital
McGill University Health Centre

Josiane Tardif, Nurse
Nurse Clinician
Clinique PREVOIR et dialyse péritonéale
CHU Ste-Justine

Jean-Philippe Marcoux, Nurse
Nurse Clinician
Clinique PREVOIR et dialyse péritonéale
CHU Ste-Justine

Véronique Pelchat, BSc(N), MBA
Clinical Nurse Specialist
Centre hospitalier universitaire mère-enfant (CHU Ste-Justine)

Marie-Ève Thomassin, Nurse
Conseillère en soins infirmiers
CHU Ste-Justine

Windy Cloutier, BSc(N)
Nurse Clinician
Cerebral Palsy Clinic, Spina-bifida/Spinal Malformation Clinic
CIUSSSE-CHUS Hôpital Fleurimont

Julie Chicoine, BSc(N)
Nurse Clinician
Neuromuscular, Neurogenetic, Neurofibromatosis, Pediatric Palliative Care Clinics
CIUSSS de l’Estrie-CHUS

Lucie Lévesque, MSc(N)
Advanced Practice Nurse PICU, and Pediatric Surgery, Cardiology and Hemato-oncology
Centre hospitalier universitaire de Québec (CHU de Québec)

Isabelle St-Sauveur, BSc(N), MSc(N)
Advanced Practice Nurse
Day Hospital Services
Montreal Children’s Hospital, McGill University Health Centre

Prepare your child

Chantal Champoux, Ps(éd), CCLS
Certified Child Life Specialist
Complex Care Service
Montreal Children’s Hospital, McGill University Health Centre, until May 2017

Geneviève Janveau, PhD
Psychologist
Montreal Children’s Hospital, McGill University Health Centre

Louise Lefebvre, BSc(N), MSc(N)
Project Nurse Consultant and Coordinator, 2015-present

Judith Le Gallais, PhD
Psychologist/Neuropsychologist
Montreal Children’s Hospital, McGill University Health Centre

Dr Hema Patel
Professor of Pediatrics
Director, Division of General Pediatrics
Director, Complex Care Service and Day Hospital Services [former] Montreal Children’s Hospital, McGill University Health Centre

Isabelle St-Cyr, NP student (Primary care), BSc, MSc(N)(A)
Gr Dip Educational Intervention
Clinical Nurse Specialist and Project coordinator 2013-2015
Montreal Children’s Hospital, McGill University Health Center

Isabelle St-Sauveur, BSc(N), MSc(N)
Advanced Practice Nurse
Day Hospital Services
Montreal Children’s Hospital, McGill University Health Centre

Prepare yourself

Sylvie Canizares, Nurse
Nurse Case Manager
Complex Care Service
Montreal Children’s Hospital, McGill University Health Centre

Dr Kathleen Huth
Lecturer, Department of Pediatrics, University of Ottawa
General Pediatrician, Children’s Hospital of Eastern Ontario

Geneviève Janveau, PhD
Psychologist
Montreal Children’s Hospital, McGill University Health Centre

Louise Lefebvre, BSc(N), MSc(N)
Project Nurse Consultant and Coordinator, 2015-present

Judith Le Gallais, PhD
Psychologist/Neuropsychologist
Montreal Children’s Hospital, McGill University Health Centre

Dr Hema Patel
Professor of Pediatrics
Director, Division of General Pediatrics
Director, Complex Care Service and Day Hospital Services [former] Montreal Children’s Hospital, McGill University Health Centre

Isabelle St-Sauveur, BSc(N), MSc(N)
Advanced Practice Nurse
Day Hospital Services
Montreal Children’s Hospital, McGill University Health Centre

Patricia Vandecruys, BPharm, MSc(Ph)
Clinical Coordinator for Paediatrics, MUHC Pharmacy & Shriners Hospital

Prepare your home

Sylvie Canizares, Nurse
Nurse Case Manager
Complex Care Service
Montreal Children’s Hospital, McGill University Health Centre

Dr Hema Patel
Professor of Pediatrics
Director, Division of General Pediatrics
Director, Complex Care Service and Day Hospital Services [former] Montreal Children’s Hospital, McGill University Health Centre

Isabelle St-Cyr, NP student (Primary care), BSc, MSc(N)(A)
Gr Dip Educational Intervention
Clinical Nurse Specialist and Project Coordinator 2013-2015
Montreal Children’s Hospital, McGill University Health Center

Isabelle St-Sauveur, BSc(N), MSc(N)
Advanced Practice Nurse
Day Hospital Services
Montreal Children’s Hospital, McGill University Health Centre

Resources for healthcare professionals

Sylvie Canizares, Nurse
Nurse Case Manager
Complex Care Service
Montreal Children’s Hospital, McGill University Health Centre (MUHC)

Dr Marie Gauthier
Pediatrician, retired
Centre hospitalier universitaire mère-enfant (CHU Ste-Justine)

Dr Kathleen Huth
Lecturer, Department of Pediatrics, University of Ottawa
General Pediatrician, Children’s Hospital of Eastern Ontario

Dr Sara Long-Gagné
Academic General Pediatrics
Pediatric Complex Care

Dr Hema Patel
Professor of Pediatrics
Director, Division of General Pediatrics
Director, Complex Care Service and Day Hospital Services [former] Montreal Children’s Hospital, McGill University Health Centre

Dr Anne Marie Sbrocchi
Assistant Professor of Pediatrics
Clinical Coordinator, Complex Care Service
Montreal Children’s Hospital, McGill University Health Centre

Isabelle St-Sauveur, BSc(N), MSc(N)
Advanced Practice Nurse
Day Hospital Services
Montreal Children’s Hospital, McGill University Health Centre