A New Low
Today was our annual trek to Detroit to get Mira's semi-annual echo and follow up with her pulmonary hypertension specialist. For once, I wasn't feeling nervous and waiting for the other shoe to drop. On the way there, I was sure it would be a regular visit, and we would hear the same thing--everything is stable. No change. When we got there, they wanted her to have an EKG in addition to her echo. No biggy, She's had that before. After the wires were in place, the tech printed the page. She looked at it strangely and printed another one. Then she did it again. I was a little concerned at that point, but not too much. They took her to the echo room and then said that they wanted Mira to do a 6-minute walk test after the echo. Something new, but not wholly unexpected. My memory told me it thought we had talked about this last year.
The echo went well, and Mira did amazing sitting on the bed by herself, not needing to hold anyone's hand. The echo tech left and was soon replaced by one of the cardiology big wigs, Dr. H., who had helped care for Patrick. He introduced himself (we're guessing he didn't remember us, which isn't terribly surprising), he took a few pictures, and then left again. By this time, I was starting to get concerned. We were placed in a room and waited for her regular doc. When he arrived, the news was actually good. Better than good.
The echo issue was really a non-issue. They noticed that she has a right aortic arch instead of a left aortic arch. We're pretty sure we already knew that from when Mira had her CT scan with contrast at 6 months. But, even if this is new information, it just means Mira is more rare--only .01% of the population has it. It doesn't really cause any problems, so it was just a notation for the record. But, the good news--the best news, really--is that Mira's pressures didn't just remain stable. They decreased!!! Mira's arterial pressures had been running in the 50% range (for normal healthy people, it should be around 20%) since her surgery at age 1. Today, Mira's pressures were running in the 40-45% range. Although not a huge change, it is downward movement, and after four years of no movement, I wasn't sure it would ever go down, so this was amazing news!
She passed her six-minute walking test, and we go back to her local cardiologist in six months. The takeaway--just keep doing what we're doing. Finally some good news. I SOOO needed this. Thank goodness that Mira's pressures have reach a new low!
The echo went well, and Mira did amazing sitting on the bed by herself, not needing to hold anyone's hand. The echo tech left and was soon replaced by one of the cardiology big wigs, Dr. H., who had helped care for Patrick. He introduced himself (we're guessing he didn't remember us, which isn't terribly surprising), he took a few pictures, and then left again. By this time, I was starting to get concerned. We were placed in a room and waited for her regular doc. When he arrived, the news was actually good. Better than good.
The echo issue was really a non-issue. They noticed that she has a right aortic arch instead of a left aortic arch. We're pretty sure we already knew that from when Mira had her CT scan with contrast at 6 months. But, even if this is new information, it just means Mira is more rare--only .01% of the population has it. It doesn't really cause any problems, so it was just a notation for the record. But, the good news--the best news, really--is that Mira's pressures didn't just remain stable. They decreased!!! Mira's arterial pressures had been running in the 50% range (for normal healthy people, it should be around 20%) since her surgery at age 1. Today, Mira's pressures were running in the 40-45% range. Although not a huge change, it is downward movement, and after four years of no movement, I wasn't sure it would ever go down, so this was amazing news!
She passed her six-minute walking test, and we go back to her local cardiologist in six months. The takeaway--just keep doing what we're doing. Finally some good news. I SOOO needed this. Thank goodness that Mira's pressures have reach a new low!