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 ;-)