Big cut in meds

Riley had an appointment with his cardiologist yesterday and Riley is doing great. The best news is that Riley's diuretics have been drastically reduced. His aldactone has been discontinued altogether; lasix has been cut back by 75 percent--10 milligrams once a day instead of 20 milligrams twice a day; digoxin is cut in half to one dose in the morning. This has streamlined his medicine regime. Instead of medicine three times a day--8 am, 5 pm, and 8 pm--he now gets medicine just twice a day. And the only nighttime medicine is his amoxicillin.

This is the first time that Riley does not take diuretics in the evening. It will make afternoon/evening outings much more pleasant because Riley won't need to pee every half an hour. We're also hoping it will make overnight waking to use the potty less frequent (although he has learned that yelling he needs to pee will bring Mommy or Daddy or Grampy back in for more conversation and goodnight kisses). Sometimes these kids are too smart for their own good ;-)

Dr. Tarnoff said we should expect Riley's oxygen saturation to drop over time from the high 90s to the high 80s to low 90s as he grows. He also said that about 20 percent of the time, single ventricle kids who are post-Fontan will develop new collateral veins, as the body tries to adapt to the dropping oxygen saturation. Riley had several collateral veins coiled in the cath lab before his Fontan surgery. Nineteen platinum coils were used to block the veins.

His energy level continues to impress us. Prior to surgery he rarely ran. Now he rarely walks. He has also gained back most of the weight he lost during his hospitalization. Yesterday he weighed in at 33.6 pounds (up from 28 pounds when he was discharged from UCSF at the end of April). Other than that, he has become a typical three year old, for better or for worse.