Clare had her six-month cardiology work-up on Monday. What a long afternoon! How did I do this monthly or even weekly??? It wiped me out for the week.
Good news and okay news. It could have been worse! This was her first official visit with her new cardiologist. He has been part of our practice since Clare was born, and I have spoken to him a few times on the phone, but we had only met one other time in person. He was the cardiologist, however, who referred us to Boston to have Clare's fistula repaired, so I was already giving him two thumbs up. After this visit, I am even more impressed. He is so thorough, and it's a breath of fresh air to have a new perspective on Clare. Not that we were ever unhappy with her old cardiologist (who moved away), but I was wary of the new change in doctors and am very pleased with the outcome so far. My only negative was that he wanted to talk more than I did - and that's only because I was done after almost three hours at the doctor's office with three kids, ages 4, 2, and 8 months.
Good news comes first - according to the echo, Clare's heart has not changed that much in the last six months. Although her stenosis has not improved, the vessels are all still small, and she has a leaky aortic valve, this has not changed for two years, which is considered good. He also listened to Clare's left radial artery where her fistula was, and it sounded normal. There is no palpable lump anymore, so the glue has most likely been reabsorbed as well.
The okay news is that since it has been two years since Clare had a cardiac catheterization, the doctor is toying with the idea of sending her back into the cath lab. He does not want her to get to a crisis point before something is done. He would rather have her undergo a cath so they can get a more accurate picture of how she's doing and do some dilations if necessary. Before this happens, though, he is going to send Clare to have a lung scan done. She can do this at our local hospital if they will do it unsedated (which they would not do 18 months ago when she had her last lung scan, and we refuse to have Clare undergo the risks of sedation just for a scan). If the local hospital won't do it, she can have it done in Boston. The lung scan will show if her lungs are working fairly equal, which provides a good indication of how her pulmonary vessels are doing. At her last scan, she was 57-43, which is pretty good for Clare. If the lung scan shows positive results, we will follow up for another echo and visit with the cardiologist in six months and re-discuss a cath then. If the scan is not good, Clare will most likely have a cath sooner.
The other okay news is that Clare's blood pressure was a little on the high side in all four extremities. Upon reviewing her list of medications, the cardiologist informed me that she was on a "baby" dose of blood pressure medication for her weight and age. I cannot remember the last time her dose was increased. He asked me what I thought of switching Clare off the liquid med and onto a pill - a medication that would be more appropriate for her age and a higher dose. A pill that she can take once a day in the morning? A pill that means I no longer have to sneak in late at night and give her one final dose of medicine before I go to bed (or on those nights I want to conk out earlier, I have to set my alarm clock to give her the dose)? A pill that means I no longer have to pack a syringe of medication whenever we go anywhere in the afternoon (even if that's just to pick Clare up from school)? Oh my goodness - give us those pills!!! Clare has been swallowing a pill for a long time now with her thyroid medication, so she will be all set with this one. The cardiologist did caution to start the new medication on the weekend when she will be with me all day, in case the higher dose causes any adverse effects. So we are going to start on Sunday. (I would start on Saturday, but I don't want to interfere with her new Special Olympics group - more on that later!)