Cardiology - TSC Update

Bup was a funny little star in Cardiology today.

When the tech came to get us, he was standing at the door looking into the hallway...wanting to explore...with his arms crossed over his chest. Upset with his mother who had encouraged him to stay in the clinic. The tech greeted Bup with "Hi R, how are you?" To which R responded, "I'm mad!"

Well, he did great throughout the ECG and EKG despite being "mad". He cried for the first five minutes, lay very still, and said over and over, "I don't like it!" Thank goodness for his "Kiki" (blanket) and Diego on the TV as eventually the tears subsided and he lay as still as possible. At the end, he turned his head towards me and stated, "All done Mommy!"

The results? Well, nothing has changed. The tumors are still there between the chambers. Which surprised me. I was hoping for miraculous news because often with these little TSC people the cardiac tumors disappear by the time they are two yrs. Not so with our Bup.

Oh well, they're tiny tumors and not obstructing anything, so we'll just keep testing every year until he gets older and can express if he's having any side effects/symptoms.

Next step, 24hr Holter Monitor testing. We could have done it today, but I didn't have time as I'm pressed for time with needing to pick W up. I only wish the Doc's were on time-lines too! After confirming the time, length of appointment, we still waited 30min before the Cardiologist saw us and I could see her...sitting at the nurses desk...yet when I donned my coat and took Bup by the hand to leave, they were able to see us asap. Amazing how that works!

Anyway, Bup was a star today throughout all the sticky electrodes and such. What a little trooper!