When we were told that Sam had a condition that was causing him to have decreased pulmonary function and his heart to be compressed and displaced, we paid attention. We understood that this condition was not life threatening, but having this corrected would be life changing for Sam. He understood that the initial recovery would be the hardest part, but knew we were all there for him. In fact, his words to me were, “Mom, I think you’re more worried about this than I am. I know it will be a few hard weeks, but I’ll be fixed forever. I can be done with this.” Ok then. Let’s do this.
On October 27, Sam underwent a surgery called the Nuss Procedure, in which Dr. Garcia placed two surgical steel bars between his sternum and heart which were then manipulated to push his chest wall outward. This maneuver gained Sam a full “two fingers” worth of much needed space for his organs to go back into their intended places – and to function at normal capacity.
He came out of surgery singing. Of course he did —did I mention he’s into music? But we had been warned that there would be a “honeymoon period” for the first few days. They didn’t lie to us; the next four days were rough. But they were there to help Sam through it all. On the fifth day, we drove Sam home where he comfortably healed and got back into his normal routine slowly.
Of course, every other person I had told about PEX said, “I’ve never heard of that,” so I took great care in describing the details of the condition and the correction. You can imagine my shock when within minutes I received a reply from Sara, the 16-year-old singer in this band, “I think I have that. I just wanted to share that with you. My mom really wants to talk to you soon.”
Sara had the tests done, and sure enough – it was PEX! Severe pectus excavatum. Sam and Sara talked. He showed her his scars. He told her about how the first few weeks were hard, but it got easier. Jennifer and I talked about our sleepless nights, heart palpitations and panic attacks we both had thinking about the procedure and the metal bars in our kids’ chests. The bond was forming. Our kids and their families were learning a new language together and experiencing new emotions together. Sure, our kids were in a band together – but who knew this “friendly PEX” would be another significant connection between our families?
Now that her initial recovery is well underway, Sara is back at band practices and singing her heart out as they prepare for a busy spring and summer performance schedule. She and Sam text when they are experiencing new sensations within their chest walls – a normal part of the healing process. They confer about the discomfort a sneeze can cause when you don’t brace for it. They’ve discussed the humor in changing the band’s name from “All The Motions” to “4 Bars.”
A major surgery with a long recovery period would be a big disruption to anyone’s routine. This article is an incredible example about how two young adults and their parents found solace through community. It is also told from a parent’s perspective and their personal experience through their child’s surgery and recovery.