Cardiologist appointment

We visited Riley's cardiologist yesterday. Everything looks as hoped - Riley's blood pressure and sats are normal and his heart sounds good. Dr. Tarnoff changed Riley's medications so that he only gets meds twice a day - morning and evening. The early afternoon dose of lasix was error-prone. Other than that, his prescriptions have not changed. Riley is still on the mega-doses of diuretics. His bed has been soaked every morning from the diuril, lasix and aldactone that he gets each night before he goes to bed. Dr. Tarnoff told us we can give the diuretics a couple of hours earlier to hopefully let him void some of that before he goes to bed.

We are seeing Dr. Tarnoff again in two weeks where we'll have an echo and an x-ray. At that point Riley will have been off the low-fat diet for a few days. In the months to come, Dr. Tarnoff will slowly be reducing the diuretics. At some point he will come off the diuril and aldactone entirely and remain on a low dosage of lasix. We're happy about that - diuril and aldactone are hard to fill. Kaiser doesn't carry diuril - after more than an hour of back-and-forth between us and the pharmacist (while we sat in the pharmacy) we located a different sized dosage at Walgreens in San Carlos. For a while it looked like we would have to drive to South San Francisco or even back to UCSF in rush hour.

The aldactone is also a hassle - it is a compound and the pharmacy can never seem to get it right. When Riley was only a few months old he was on aldactone and we picked up a dose just before a drive to San Luis Obispo for the weekend. When we were more than halfway there, the pharmacy called to tell us they mixed the concentration wrong - Riley would need to take 10 times as much to get the proper dosage. Stuffing 10 ml. of medicine down a newborn's throat wasn't an option so we had to have the medicine re-filled at a local pharmacy in SLO. And on Friday we were told to come back to get the aldactone four hours later, even though the prescriptions had been phoned in the day before.