Return to the non-fat diet--ugh!

Riley had a follow-up appointment with his cardiologist today, which included an x-ray and an echocardiogram. Dr. Tarnoff said that Riley's heart function is great and that he is doing really well from a cardiac perspective. Unfortunately, the echo showed some "unusual congested vessels." He was certain that what he was seeing was not pulmonary arteries or veins. That could only mean that the congested vessels are lymphatic vessels, which are distended due to lymph fluid from the damaged lymph system. Under normal circumstances, you cannot see lymphatic vessels on an echo.

That sadly means that Riley will resume his non-fat diet, consuming less than 6.6 grams of fat per day. This is extremely frustrating, as we just started allowing him fatty foods, like cheese and peanut butter, less than a week ago. Tarnoff wants him to be on this diet for one month, and we will go back for another follow-up appointment in six weeks, or two weeks after ending the non-fat diet. The appointment will include an x-ray, an echo, an EKG, and blood work. The blood work will mostly be looking at his electrolytes to see if there has been any negative impacts on his system as a result of the massive doses of diuretics.

The vomiting and sensitive gag reflex continues to be a concern to us, although Tarnoff wasn't worried. He has thrown up three times in the past week. Two of those episodes were just minutes after he went to bed, and his entire bed including blankets, pillow, sheets, and jammies had to be changed. Even with the vomiting, the medicine routine seems to be getting better, though, after we switched some of the medicines back to the liquid form. He seemed to like chewing the pills in the hospital, but he seems to prefer the liquids at home. Also, the distraction technique that the Dameron-Drew family recommended seems to be working a bit. When it looks like he's going to be sick or he starts gagging, we start singing loudly and jumping around. He thinks we're nuts, but he probably would have come to that conclusion at some point on his own regardless ;-)

Medicine making Riley sick

Riley has been having a hard time with the meds. We're mixing the worst-tasting ones (digoxin and aldactone) with juice to help them go down. But he still often gags at medicine time. He has also been vomiting regularly - sometimes right after he takes meds, sometimes a while later after he's had something to eat. It's especially frustrating since he still isn't eating much - we hate to lose what little calories he's putting down. Earlier today he threw up his miniscule lunch after drinking some grape juice. His stomach is obviously bothering him quite a bit, sometimes he just wants to lie on the couch. He's apprehensive about eating because he's afraid he's going to throw up.

We talked to a member of Riley's cardiology team but she didn't have much advice. She recommended mixing the medicine (which we've tried) and spreading them out so he's not taking them all at once (which we'll try tonight).

Riley has shown some interest in foods that he can't eat very much of such as string cheese, croutons and pizza. We have one more week of the low fat diet and then we'll have more options to get him eating.

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.