Severe Pectus Excavatum Surgery Info.

X-Ray of Jaime's Chest pushing on his heart.

Yesterday, we consulted with one of the best Pectus Excavatum Surgeons in the country at Cincinnati Children's Hospital. It has been determined that Jaime will require surgery to fix his severe pectus excavatum. This is usually done on children 8 years of age and older, but can be done on children with significant medical issues. Jaime is now 5 years old, he has decreased endurance, significant lung and airway issues, as well as a compressed heart. All of these factors deem it necessary for surgery to be done before 8 years of age. The longer we wait, the worse his symptoms will get and they will not go away or at least improve until surgery is done, waiting can cause permanent damage. We have opted to go forward with the surgery sooner than later to get him on the right path of healing (whatever that will mean for his little body).
Because some have asked...these are the following steps that need to be completed to get from Pectus Excavatum Consult to OR: Pulmonary Evaluation including PFT (pulmonary function test), Cardiology Evaluation, including Cardiac MRI, Genetic Evaluation/Cardiac Genetics, Allergy Patch Testing (Metal Testing) which consists of 2 appointments over 72hrs, ORSA Testing, Pectus Education Class, Meetings with Five Families set up by the hospital who are at varying stages post-op of pectus repair and then all of the "normal" pre-op stuff...labs, chest x-rays, EKG, anesthesia consult, also Jaime will be enrolled in a pain management study so, all testing associated with that. At this point, I cannot give a definitive time frame for surgery.
In terms of the actual surgery, Jaime will be having a NUSS Procedure. This is "minimally invasive surgical techniques have been used for more than two decades. With this approach, two small lateral incisions are made. A bar that has been shaped to the desired chest contour is inserted into and across the chest and positioned below the sternum. This is done using the guidance of an endoscope (instrument used to visualize the inside of the chest). The bar is held in place by sutures and by a small metal plate that prevents rotation of the bar as the chest is reshaped. This procedure is similar to placing braces on teeth, which facilitates their correct realignment." (http://www.cincinnatichildrens.org/health/p/pectus-excavatum/)
Time in the hospital is 4-7 days with a THREE MONTH post-op recovery period where no jumping or running around can take place (that should be fun keeping my crazy monkey down for months!). The bar will stay inserted for at least 3 years, during which time he can return to his normal activity (after the initial 3 months). We have been told that this is a very painful surgery and recovery and that pain management is key to healing! My goal is to do it around the holidays in the winter when Jaime will be home-bound, but we'll see how this deck of cards plays out! He will be having his cardiac MRI and cardiac and pulmonary consults later this month.

Jaime's severe pectus excavatum, sunken in chest.

So, that's the scoop! I will continue to update this blog as things progress. Thank you all for continuing to follow our story as we begin this whole new chapter, your thoughts, prayers and support are GREATLY appreciated!