Good news from the cardiologist

We had an EKG, echocardiogram and chest x-ray today followed by a visit with the cardiologist. Riley did great with the echo and the x-ray but was pretty unhappy with the EKG (as normal). He is really getting comfortable with Doug, the echo tech. Dr. Tarnoff said everything looks good - there is no sign of fluid or chylous, which means Riley can stay on the regular diet. Yippee!

He also lowered Riley's diuretics - reduced his lasix by 1/3rd, reduced his aldactone by 1/3rd and his diuril by half. Furthermore, we'll be discontinuing the diuril completely in a week. That should make for a more comfortable night's sleep and dry sheets (Riley is completely potty trained now during the day but often wakes up wet in the middle of the night asking to use the potty). We'll be seeing Dr. Tarnoff again in two months.

Normal diet resumes

Four painfully unpalatable weeks later, Riley is able to eat fat again. He has been asking for cheese 37 times a day. I can't blame the kid. We have been trying to limit his intake of cheese because it can be hard on the digestive track, and we want to return to a regular diet slowly so that he doesn't sick by shocking his system with too much fat.

Other than that, Riley has been doing great. He seems to have lots of energy, although his stamina is still limited. But he is running and playing and being his regular cheerful self, which is so great to see. We were worried that it would take six months for him to get back to "normal," but he has recovered so much more quickly that we ever anticipated.

There are still some sutures working their way out of his chest scar, but his cardiologist Dr. Tarnoff says that's normal and it will just take time. He has another appointment with Tarnoff in two weeks. He will have some blood work done before hand to check to see if his electrolytes have been negatively impacted as a result of the heavy doses of diuretics. He will also have another echocardiogram and EKG. The echo revealed the "distended" lymphatic vessels just before his last visit, and we are crossing our fingers that they are back to normal so that he can continue to eat whatever he wants.

Finally, he is still very thin. He was almost 35 pounds when he was admitted to UCSF for surgery. He is now just over 28 pounds. Hopefully having access to more of his favorite, high calorie foods will help him bulk up a bit again.