As we start imagining next year's conference, I wanted to share some of the feedback and start a conversation about what people liked and want to see more of, and what people would like to be different. Greatly value everyone's input in making it successful for all of us and our patients/families!

What attendees valued most

• Family and patient voices. The family/patient panel was the dominant theme in written feedback. Attendees valued hearing real-life experiences, understanding the “why” behind the work, and seeing care through the family perspective.

• Cross-center learning. Roundtables and breakout discussions helped participants compare workflows, identify shared challenges, and bring practical ideas back to their own institutions.

• Actionable clinical content. Frequently cited content included caregiver readiness and education, discharge planning across facilities, ventilator troubleshooting, high-flow and noninvasive support, monitoring parameters, and ethical decision-making.

• Collaborative energy. Several respondents emphasized the value of networking, gathering ideas, and forming connections…

Curious what people do to help inform local EMS that there is a new trach vent child in their area?

Dayton recently joined Project Austin https://www.projectaustin.org/

Would love to hear what other centers are doing to partner with local EMS for our complex patients!

One of the things I found particularly impactful at the conference was hearing about how impactful it can be having families caring for children with trachs and vents speak with families who might be considering a trach/vent for their child.

I'm curious how many centers have programs like this that let families connect in this way. This is something that we are now looking into here at Dayton.

Is it a formal or informal connection? Are the parent partners part of any parent advisory boards that your hospital might have? Are they paid through the hospital or a grant, vs. volunteer vs. consultant? Any resources and parent partners y'all have created that has been helpful?

Here is a great website that has available waivers in all the states. Link is for Ohio.

https://www.kidswaivers.org/oh/

Hi everyone,

Dr Reshma Aminfrom SickKids kindly shared her experience with HFNC in the outpatient setting and titrating HF with PSG during the PAVE confernece. She has kindly shared her slides and the links to the sensors that they use for the PSG for HFNC titration.

Dymedix:

www.dymedix.com

Dymedix Specializes in Accurate Pediatric Sleep Monitors Including Our Lullaby™ Family of Reusable or Disposable Airflow Sensors Developed For Comfort Of Infants & Children.

Please find her presentation attached.

Hi all!

Please let me know your thoughts on this pilot proposal to begin learning what data we have access to at our respective sites. This will help with crafting measure definitions and determining what we could potentially work on.

thanks! Nate

Forum to discuss psychosocial issues affecting patient and families and share resources