Register for Event:

Operating a mini ICU; Providing 24/7 Care in the Home

January 27, 2022, 8 PM EDT

For many families with medically complex children, the home can begin to resemble a hospital’s critical care unit –  full of medical equipment, assistive devices, and medical supplies. The around-the-clock, at-home care parents provide is similar to care the children would receive from expert clinicians in a hospital setting.  How do you prepare for this? Who will help you?

Join CPN and our expert panel including Sue McCarthy, who cared for her daughter in this way and helped create The CAITLYNN Project, an innovative program helping families successfully make the transition from hospital to home when the care needs are great. Here are just of a few of the things we hope to discuss:

  • Who talks to you about medical interventions you are considering for your child and how they might benefit and perhaps complicate not just your child’s life but yours as well?
  • How do you educate yourself and become comfortable with the medical care you will be tasked to do? How do you have confidence that you can do it?  What do you do or who do you lean on when your confidence falters? 
  • Who helps you think about the modifications that might be needed in your home to accommodate new equipment or even if your home can accommodate these things?
  • How do you cope with the emotional toll and exhaustion that may ensue from running a “mini ICU” in your home? 
  • Have you found respite care? Do you use it?
  •  If your child’s needs feel too great  are you willing to consider if a residential placement might be beneficial for your child? 


On Thursday, January 20th  CPN will also be participating in a webinar, Discharge from Hospital to Home: The CAITLYNN Project- a Model of Excellence. Creating and Applying Individualized Transition Plans.  Hosted by a team from Pennsylvania’s Pediatric Palliative Care Coalition (PPCC), Greater Illinois Pediatric Palliative Care Coalition (GIPPCC), Children’s Hospice & Palliative Care Coalition of California (CHPCC), and the CSU Shiley Haynes Institute for Palliative Care, the webinar will focus on the provider role in transitioning from hospital to home.  Parents are invited to attend for free by emailing connect@courageousparentsnetwork.org