Johns Hopkins, Part 2

Last Tuesday, we had the second of our appointments at Johns Hopkins. Michael was scheduled for an echocardiogram at 1:00 and then Todd & Michael had an appointment with the cardiologist at 2:00.

This was the first time that Michael has had an echocardiogram at Johns Hopkins. We didn't know what to expect but it was an awesome experience. While we were waiting to go in, Michael got to look at a book with DVD movies and shows in it. The technician came out and asked him which one he would like to watch while they did the echo. He picked Scooby Doo but the DVD was skipping so his second choice was The Incredibles. With the movie playing, Michael was cooperative through the entire echo, which lasted about 45 minutes. Unfortunately, Katie wasn't so happy about being in a small room for so long. The technician was great and said it didn't bother her how many times we had to leave the room or how much noise Katie made. That was a good thing because it was a lot. I finally took her out to the waiting room with the toys. It was nice to have Todd there to stay in the room with Michael!

After the echo, we went into the exam room. The physician assistant, whom we have met with for the past 3 appointments, came in. She normally goes over the family history and any changes that have happened in the past year. If we have any concerns, we address them with her and she relays them to the doctor. If we have any questions throughout the year, we can call or email her. She will check with the doctor and gets us an answer quickly. It's nice to have this contact!

Todd's echocardiogram, which he had done at his cardiologist in Columbia a few months ago, looked great. The size of his aorta was unchanged and hasn't changed since 2006. It is staying in the range of 3.95 - 4.00 cm. They won't consider surgery until it reaches closer to 5.0 cm. Hopefully it won't get to that size.

Michael's echo looked good too. They measured his wingspan, as well as his height. They plotted his height on a chart for Marfan patients. His predicted height is between 5'11" and 6'. We talked about his appt with the orthopedic doctor the previous day, as well as his shoe inserts. We also discussed the medicine that he is taking for his heart. At the end of the appointment, they had Michael do a test to measure his heart rate. He had to run up and down 2 flights of stairs. They already had his resting heart rate and his heart rate after exercise was over 100. The doctor would like for it to be under 100 so they are increasing the dosage of his medicine. He was taking 25mg of Atenolol and will now be taking 50mg.

Katie didn't have an appointment but they looked her over as well. She wasn't very cooperative but they did manage to get her height and weight. We talked about starting her on the same heart medicine as Michael. The doctor said that it was an individual family choice but he would recommend starting her on it. The sooner the better to keep her aorta from getting enlarged. If she hopes to have children in the future, her aorta needs to remain under 4cm to avoid a high risk pregnancy. So Todd and I decided that she will start on it now. The prescription is a liquid and she is very agreeable to taking it, which is a relief.

So everyone had good checkups and we will go back again next summer. It's always a relief when we hear that things haven't gotten any worse. In the meantime, we will continue with checkups at their doctors here.