Today was the day. Joshua spent the afternoon at his cardiology appointment & it went well. He was a good boy, a little nervous at first, but very good.
So here's what we learned.... Joshua's heart is still doing well. However, he is at a point where we can get the ball rolling on the Fontan (Joshua's next open-heart surgery), if we choose. We have some say in the matter, because he is stable enough that we can do it when it's convenient. I don't know that there is ever a convenient time for open heart surgery...but since it's inevitable, it's nice that we have some say in the matter.
We went into the appointment today knowing that the time for surgery is approaching. After more discussion, Jon & I decided to have Joshua's case turned over to the doctors at UCSF for review. If they give us the go-ahead, Joshua will have a cath scheduled some time in the next couple months (probably by the end of the year) & then surgery within six months of the cath.
We are very happy to see that Joshua's heart is holding steady. He was using his pacemaker today when he was being examined, which is the first time we've been aware of him using it at all. The doctors had previously discussed having it removed during the Fontan, since it wasn't being used. That's no longer the case & he'll keep it. The pacemaker gives me reassurance. I have grown to like it, so this news is ok in my book.
Another concern we've had, as I have mentioned, is his shortness of breath. He gets winded so easily & Dr. Rivera suggested it could be asthma. I am not certain that's the case, but he prescribed a breathing treatment to try on Joshua before activity and/or when he's sick. We are going to give it a shot. I'm really hoping it helps & if it does, it'll be amazing & who knows, maybe we'll choose to wait on the Fontan a bit longer. Our main concern right now is Josh's decreasing activity level...so if this breathing treatment helps, then we are in good shape!!!
We feel incredibly blessed to be in this position. We are so grateful that we have flexibility in scheduling & a stable little boy. We'll keep you posted once we hear back from UCSF with their game plan.