Firefly Chat

The PPCC Firefly Chat is a series of interactive virtual discussions that explore issues facing the pediatric palliative care community in PA and beyond.

The Challenges of Organizing Medical Data

Tuesday, February 15, 2022 — Noon-1:00 PM EST

To listen to the February Firefly Chat,
Click HERE.

We know there are many stressors that families with children with medical complexity face every single day.  But one that doesn’t often get spoken about is the challenge of organizing medical data.

Children with medical complexities frequently see multiple specialists and are sometimes traveling to more than one hospital or medical center for care.  They may also have care providers in the home or school setting that are supporting them.  Families are tasked not only with sharing their stories over and over, but also trying to remember critical health data points, medication names and doses in addition to important contacts in their child’s care.

With this in mind, during this Firefly Chat session, we will talk with both a provider and caregiver about their experiences in trying to improve organization of medical data for their child and/or patients.  Challenges and successes in this process will be highlighted.  During this discussion, we will highlight two tools that the Pediatric Palliative Care Coalition has worked to create to support families in their medical journey including the Care Plan Book and the Lightning Bug App.

We hope you can join us as we explore these resources and also join in discussion of your own experiences and tips to support parents and providers in improving organization, communication and care.


Presenters:

Cassie McCachren

Cassie McCachren works at S&T Bank. She resides in New Florence with her husband, Tim, their children, and their dog Oreo. Zach is 16, Zoe is 14, Zane would have been 8, but passed away in 2015 from a rare medical condition, and Zayva is 3. Zayva was born with the same medical conditions as Zane. Zayva is trach, gtube, and vent dependent with a very vibrant personality. The family loves to spend time together and make the most of every day with Zayva. Cassie serves on the PPCC Board of Directors.

Becky Oakley, FNP-C, RN
Executive Director, Brades Place

Becky has dedicated her life and nursing career to caring for children with life-changing diagnoses and disabilities. Becky adores her six children, who inspire her daily. Brades’ Place is named after her medically complex son, Brady, who taught her that children with unique traits do amazing things every day. Becky brings experience as a parent and as a medical provider for medically complex children. She draws on both experiences to improve the lives of her patients and their families. To Brades’ Place, she brings a deep respect for the miracles that happen when parents and children are able to come together for one another with the supports they need to succeed.

Moderator:

Dana Dombrowski, MSW, LSW
Social Worker and Psychosocial Program Coordinator
The Children’s Hospital of Philadelphia

Dana Dombrowski graduated from the University of Connecticut in 2003 with a BS in Family Development and a minor in Sociology. She went on to attend graduate school at the University of Pennsylvania where she received her Master’s degree in Social Work in 2005. Upon completion of this program, she obtained her LSW and was hired by The Children’s Hospital of Philadelphia as a Pediatric Oncology Social Worker. She worked in that position specializing in patients with a terminal cancer diagnosis, grief and loss for over 8 years. In 2013, Dana joined CHOP’s palliative care team (PACT Team) as a social worker and the psychosocial program coordinator.

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PPCC is not a health care provider and does not give medical advice or treatment. PPCC does not endorse or recommend any listed facilities, service providers, or support groups herein. PPCC offers the list and information as a resource only. PPCC does not pre-evaluate, or consider the Medicare/Medicaid status of the providers.

The Pediatric Palliative Care Coalition is a registered 501(c) (3) not-for-profit organization.  Donations are tax-deductible according to the IRS’s rules and regulations.  The official registration and financial information for PPCC may be obtained from the Pennsylvania Department of State by calling toll-free within Pennsylvania 1-800-732-0999.