So what happens next?

I have had a lot of people ask about what the doctors did this surgery and what will happen in the future...

So here is a picture of Titus's heart before surgery and after...

The first surgery was palliative, meaning it did not actually repair anything. You could think of it like putting duct tape on something--a temporary fix. They opened his chest, took a look at the heart to make sure it was in line with the ECHOs they completed and then they placed a shunt (a 4mm goretex tube) to connect his aorta to his pulmonary artery. This shunt allows a blood flow much like when he was in my womb. It is not 100% since there is still a hole between the ventricles allowing oxygenated and non-oxygenated blood to mix, and both the aorta and pulmonary artery are still coming off the right side of his heart BUT it directs blood flow to the lungs since his pulmonary artery is closed and keeps him stable for the time being. The down side is that this shunt will not grow with his heart and as he grows, it will eventually be inadequate in supplying enough flow to the lungs.

So when is his next surgery? That depends. The faster he grows, the sooner that will be but they estimate sometime between 4-8 months of age. The cardiologists and surgeon have not committed to a certain procedure as the next step for Titus. The plan is to let him grow as much as possible and then decide if a 4 chambered heart is possible or if we need to go the 2 step, 3 chamber Glenn/Fontan route.

How do we know when he is ready for the next surgery?  His oxygen levels will tell us when. For heart healthy babies and adults, oxygen levels are 100%. Titus's will never be 100%, and with his shunt they should be between 75-85%. Anything lower then that indicates readiness for the next surgery. As we get closer to that time he will become more cyanotic or blue, which yes is VERY scary! We have made it clear that we would rather be more aggressive and have the surgery sooner than chance him going into cardiac arrest or have other body systems suffer due to inadequate blood flow, but this remains a balancing act with his cardiac team. His oxygen levels were running 87-90 when we came home and have been running around 83 the last few days...he is growing much faster than anyone anticipated!