Waiting for a decision
Steve and I met with the Director of the transplant program yesterday to talk about what they discussed about Porter in their Cardiology conference. They are leaning towards trying the myectomy first to see if they can section out some of the muscle in Porter’s heart but in doing this they will most likely have to cut into the bottom (apex) of his heart to get to the obstruction. Kids with Hypertrophic Obstructive Cardiomyopathy typically have obstructions right below the aortic valve at the top of the septum but since Porter likes to do things differently than the norm his is at the bottom of the septum. Cutting into the muscle of the heart comes with its own set of risks but the obstruction is also near the conduction system of the heart which makes it even trickier. Steve and I asked if they would consider listing Porter for transplant here if the surgery is determined to be too dangerous or we would go back to NC to wait for a transplant. He said they hadn’t really discussed transplant in the meeting because Porter wasn’t brought here with the intention of a transplant but only for the surgery. He said that the transplant committee would have to approve Porter and given his lung disease and the potential neurological challenges it might be difficult. We informed the Dr. that we were told Porter does not have lung disease. He’s been on a ventilator since he was 7 weeks old without having a chance to come off of it and the Cath showed that the pressures in his lungs were good. We also said Neuro said that they weren’t concerned about the fluid in the ventricles of Porter’s brain. We also asked if they should put Porter through the transplant “application” process in case something goes wrong with the surgery and they need to activate his transplant status quickly. The Dr. went silent for close to 5 minutes just thinking and processing what we said. He then looked at us and said he needed to make some phone calls and would get back to us Tues or Wed. The Chief Surgeon is out of town this week so we most likely won’t have any definitive answers until next week. We’ll keep waiting and playing with Porter in hopes of an answer soon.