Cardiologist check-in

It's been a while since we've posted about Riley's health, which is A Good Thing. He just finished his first season of t-ball and is almost ready for kindergarten in the Fall. We're all looking forward to a summer vacation in Cape Cod with the Norton in-laws. Other than occasionally feeling tired and being a bit slower and smaller than his peers, life has been reasonably normal.

We went to San Francisco for an echo and appointment with Dr. Tarnoff this morning. Riley's oxygen sats were 81% which is basically unchanged since the Fontan takedown. Tarnoff says the valve is still "mildly leaky" which is also good news. He reduced his Lasix and aldactone dosages and plans to see us in six months. Also, at our request he switched Riley to a pill form of aldactone, which allows us to breathe a major sigh of relief. The liquid aldactone comes in a special compound and needs refrigeration. It also needs to be refilled every few weeks. Not only does it make traveling a hassle, the Kaiser pharmacy can never seem to get it right. Most of the time the compound hasn't been filled when we arrive and/or the attendant can't find the prescription. Pharmacists these days spend most of their time punching buttons and filling pill jars, so what used to be a regular day's work -- crushing, stirring, measuring and mixing -- now baffles them. So pills are good.

Dr. Tarnoff recapped Riley's condition and outlook: either oxygen saturations will drop or the valve will get worse and "something else" will need to be done. Initially they will use medications, then surgical interventions, then ultimately a heart transplant. Nothing new here. But Tarnoff did say something we haven't heard since the Fontan setback. When talking about time and the uncertainty of interventions, he said "one, to two, to three decades." It's the first time we've heard the word "decades" since Riley was on the Fontan circulation. Every little bit of encouragement counts.

One other little piece of trivia: Dr. Tarnoff mentioned that we don't know where Riley's appendix is. Since he is heterotaxic, several of his organs are flipped. That's something to keep in mind as Riley grows - if he ever needs an appendectomy the doctors might want to poke around a bit before they make the standard right abdominal incision.