I've known about the Collaborative since Evan was a few weeks old. We participated in our center's Home Monitoring Program once we were discharged home from his first surgery, the Norwood. The HMP consisted of daily weigh-ins on a scale provided by our hospital, constant pulse-ox monitoring, and recording each feed (quantity and time). At the time, we didn't understand how beneficial this program was for Evan. We were really blessed during the interstage; Evan had no complications and didn't need any intervention. Others are not so lucky. The goal of these interstage home monitoring programs is to catch problems before they become too serious. Parents are able to monitor their babies closely at home. They can call their child's cardiologist/team when there is a problem- no weight gain, or weight loss, lower or higher oxygen saturations than normal, etc. These programs are saving HLHS babies' lives across the country.
I traveled to Cincinnati on Thursday and returned to my beloved sunshine state late Saturday night. The conference was held at Cincinnati Children's Hospital all day Friday and half of Saturday. It was very, very cold and I learned a valuable lesson- chapstick and lotion are your best friend.
The conference was more than I could have ever imagined it would be. I'm not sure what I expected, but it definitely wasn't this. Teams consisting of cardiologists, nurse practitioners, nurses, dieticians, therapists, social workers, and parents filled a large conference room and the excitement began. Over 100 people were in attendance, including 15 parents, representing centers from across the country. From the moment I walked in, I felt welcomed. I felt important. Doctors and team members expressed how thrilled they were to see so many parents in attendance and how crucial we are to the success of the collaborative.
Before the conference, I did not fully comprehend how amazing pediatric cardiologists and their team members are. Sure, I knew it took a special kind of person to work with babies and children with life-threatening heart defects, but until this weekend, I did not see it as more than just their "job". Please bare with me for a few minutes, I am still on an "emotional high" from the past two days and I am desperately trying not to jump up and down and shout for joy while I try my best to describe what I witnessed.. The members of the NPC-QIC have more passion for saving Hypoplastic Left Heart Syndrome babies than you can even begin to imagine. They are not satisfied with their current programs. They are not satisfied with the percentage of babies surviving from the first to second surgery, even though just 30 years ago these babies were being sent home to die. They are spending so much time and energy going above and beyond what is expected of them to change the future of children born like my son. They are changing the quality of life for these kids- kids and families they have yet to meet and have no tie to! I used to think Cardiologists were keeping their ideas to themselves, not wanting to share their "trade secrets" with anyone else. This weekend, I saw how open every team was to sharing their "secrets" with their colleagues. I watched cardiologists and team members from different centers take notes as another shared what is working for their center.
This weekend, I saw not only passion for caring for HLHS kids, but a fire to continue to make advancements and improvements for these children. I am so humbled by this experience, and feel forever indebted to these physicians and care team members who are helping our children continue to defy the odds. I cannot wait to share everything I have learned with my team's collaborative coordinator.
On a selfish note, I was so happy to spend some time with my favorite heart moms and fellow Sisters by Heart members! It's rare for so many of us to be in the same room at the same time since we all live in different states! I also got to meet several other heart parents and it was a joy to be around parents who have faced similar trials and tribulations as I have. I am looking forward to seeing everyone again, September cannot come soon enough!
|SBH Family <3|