Resources

Community Resources

Trach Buddy Program

Part of Family Connection Program, parents or guardians who have been through a health challenge with a child and are a few years out from the start of that challenge become Buddy Mentors who are matched up with a parent/guardian just beginning their journey.

Common Suppliers of Durable Medical Equipment (DME)

• Promptcare
• Respiratory Services of Western New York
• Upstate Homecare
• Health Systems Services
• Parker Lee Project
  While the majority of children get things supplied through insurance, some items are not covered or not enough supply is provided. The Parker Lee Project can help fill that gap.

Community and Home Nursing Resources

• SKIP of NY
• Compassion Net
• Private Duty Nursing Manual
• NYS Medicaid Directory for Private Duty Nurses
• Mary Cariola
• Monroe County Early Intervention
• UR Medicine Home Care
• Visitng Nurse Association of Western New York
• Lifetime Care
• Daystar - Pediatric Day Respite Center

Printable Guides

• Go-bag List
• Tracheostomy Care - A Guide for Parents and Caregivers – Pediatric Patient Education Booklet
• Cuidado de la traqueotomía: una guía para padres y cuidadores
• My Quick Reference Trach Guide – Pediatric Patient Trach Info
• What Do the Home Supplies Look Like?
• Tracheostomy Equipment & Supply List for Home

More Information

Golisano Children's Hospital Family Resource Library

Located on the first floor of Golisano Children’s Hospital (GCH) (room 1.1177), the Family Resource Library is staffed by a professional librarian who can help you:

• Find reliable and helpful medical information
• Set up and use MyChart
• Use an iPad or personal computer

You can visit the library during normal business hours. Or you can email, call, or send us a question through our Ask-A-Librarian service.

Phone: (585) 275-7710, Email: GCH_Library@URMC.Rochester.edu

Also see these resources for more information.

• Aaron's Tracheostomy Page
• St. Louis Children's Hospital Interactive Trach Learning
• American Speech-Language-Hearing Association
  "Making effective communication a human right, accessible and achievable for all."
• American Thoracic Society Patient Information Series: Use of a Tracheostomy with a Child
• Bissell, C. (2008) Pediatric Tracheostomy Home Care Guide
  (Jones & Bartlett Publishers - ISBN-10: 0763753866 ISBN-13: 978-0763753863)