Connie saw Dr. Bromberg yesterday morning. He didn't have an echo or pacer check as he just had one in mid April after his little fainting spell/ER visit. He did get a chest x-ray as it's been awhile since we've done one of those. Connie was great. Dr. Bromberg feels that it was a good decision to go back on the diuretic, Aldactizide last week. We're trying to keep the big picture in mind and not over-scrutinize everything with him. However, even with his 2 lb cast on he now weighs a pound less than he did at the end of April without his cast. That, coupled with his puffier appearance prior to restarting the med tells us that he was carrying around a little extra fluid. We tried the little experiment and it didn't seem to work so this probably means that he'll be on some sort of diuretic therapeutically (long term). We brought up a concern that he was often clammy, even when sitting still. Since he isn't short of breath or huffing and puffing after playing or sweating profusely when playing, Dr. Bromberg feels like Connie may just be one of those kids that gets sweaty. He doesn't feel it's a sign of heart failure for Connie as he has no other symptoms! His exam is normal, his last echo was normal, his function is fine. Yes, his heart is enlarged and has been since his first surgery, but that's pretty much it. The doctor reassured us by saying that if we took him to 20 centers around the country and asked if they thought he was a transplant candidate they'd laugh us out of the building. By this he meant that we need to get that out of our heads. He can't guarantee us we'll never have to talk about it, but we need to get last summer's suggestion by SLCH out of our minds. He's not starting him on Carvedilol like we had considered so that's great news too. We will do a pacer check via the Carelink monitor in a month and then go back in September for the next appointment that will include the full work-up with echo, etc. Then he can compare that echo with the one from March and they will be a full six months apart. He also mentioned that at some point, he would like him to have biventricular pacing. In order to get that, he'd have to be opened up and another lead placed on his heart. He's not in any hurry, but thinks that this could be a big deal and a huge help and possibly the answer to all of Connie's problems so for now we're kind of thinking that whenever his conduit needs replacing we'll do it at that time.
We also brought up two other concerns. One was his head size. Greg felt like his head has grown recently. Dr. Bromberg measured it and according to the pediatrician, it is normal for a three year old. Our fear was that the headaches he's been complaining about meant he had too much bloodflow to his head or too high of pressures in the RV or something. Dr. Bromberg also reviewed the CT scan that was done when he fainted/fell in mid April and noted that the radiologist that read the scan remarked about the size of the front of his head but basically said it could be physiologic (normal). The other concern was a new fun oddity for Connie. He's losing hair. Not in clumps or anything, but he's shedding way more than I've ever seen anyone shed. When you run your fingers through his hair you get several strands each time. Dr. Bromberg urged us to discuss it with the pediatrician and Dr. Davis referred us to a dermatologist. We have an appointment for July 1st.