Monday, January 28, 2013
NPC-QIC Winter Learning Session
The Learning Session consisted of two days of intense discussions, speakers presenting information about their current home monitoring programs and inpatient treatment plans and breakout sessions centered around different subjects ranging from partnering with parents to developing ways to pre-plan appointments and actively engage pediatricians as care team members.
|Amy, Natasha, Stacey, Stacie and Kathy|
The NPC-QIC is currently focused on improving the mortality rate of HLHS infants during the interstage period. Some of their top priorities include improving growth by effectively treating feeding problems, and understanding and preventing readmissions to the hospital during interstage. The implementation of home monitoring programs has proven to be an instrumental tool in managing care for an HLHS interstage baby. Cardiologists are able to closely monitor the progress, or lack of progress, their patients are making by the information parents are recording at home. Parents are armed with interstage equipment (charts, scales, pulse ox machines), information, and emergency plans needed to catch any potential problems at home. Some centers even have Single-Ventricle Clinics, solely dedicated to managing their patients' care between the first and second stage surgeries.
In addition to the physicians and care team members, 15 parents from across the country were in attendance to lend personal experience. Parents were not only invited to attend the conference, but encouraged to participate in discussions, ask questions and answer questions presented by the care teams. Our voices, as parents, matter. Our suggestions are taken to heart and our opinions are evolving the established standards. It was incredible to sit amongst these cardiology teams from across the country and see firsthand their eagerness to ask question after question to understand the parental point of view.
Attending the Learning Session was such an incredible experience and we are thrilled to have the opportunity to be involved in their mission. We all left feeling inspired by the passion that permeated throughout that conference room. Speaking of inspiration ...a couple of us had a chance to meet Meg Roswick, a 21-year old HLHSer, who is truly living her life to the fullest. She and her mom, Patty, are like celebrities in the HLHS community. Such an inspiration to us parents! Some of us are told after diagnosis that our HLHSers will never be able to play sports. Patty raised Meg to not let her HLHS define her and let her live like a "normal" kid. Meg found her passion for gymnastics when she was just a toddler and now she is a competitive gymnast who loves extreme sports and is even training for a half-marathon! She's in college and studying bio genetics. Meg and Patty are both amazing and give us so much HOPE for the future of our kids. Thank you Meg and Patty for coming out to meet us and continuing to inspire heart parents across the country by sharing your journey and opening your hearts to us!
|Stacie, Stacey, Meg & Patty|
It is obvious from our experiences this weekend that working as a team (cardios, nurses, pediatricians, dietitians parents, etc.) can greatly improve the challenging interstage period. The feedback parents received from the cardiac teams following the Learning Session was extremely encouraging and uplifting. We're look forward to participating in the next NPC-QIC learning session, scheduled for September 27 and 28, 2013 to continue with this mission.
If you're a parent or caregiver of an HLHS child, or child requiring the Norwood and Glenn/Hemi, and would like to become involved in the cardiology improvement collaborative, please visit https://jcchdqi.org/ for more information.
To follow in Meg's journey and learn more about her, feel free to visit her Facebook Page!
* No donations or Sisters by Heart funds were used for attendees travel expenses.