With Hannah seeing so many specialists and receiving so many therapies now, I realized my monthly updates were going to be way too long. I’m going to start doing health updates after our visits with each one of her specialists. This will make it easier for y’all to keep up with how she is doing, and you won’t have to read a novel each monthly update! So, on to the update…
Hannah had a cardiology appointment on June 8th. She had an echo while she was inpatient, and they were able to get good pictures, so we didn’t get a repeat echo before her appointment. Overall, her cardiologist (who is awesome, by the way) was very pleased with how well her heart was functioning considering how sick she was. The pressure in her RVOT (Right ventricular outflow tract) was higher than on her previous echo in January. This is the same area where she had her stents placed when she was one month old. RVOT stenosis is one of the key defects seen in Tetralogy of Fallot.
Below are a couple pictures of Hannah’s defects as well as a healthy heart. Unfortunately, since having Tetralogy of Fallot with an AV Canal Defect is very rare, I couldn’t find a single picture with both defects. So, basically, Hannah has the top picture, which shows the narrowing of the pulmonary valve, or RVOT. She also has the bottom right picture which shows the lack of separation between both the atria and the ventricles.
Since Hannah was fairly sick at the time the echo was performed, her cardiologist isn’t sure whether the pressure was elevated because of her illness, or if it was truly elevated because of narrowing. Unfortunately, this means we need to have another sedated echo done the beginning of November to see if the pressure is still elevated or has increased. If the pressure has increased, we will need to have a conversation about potentially needing a catheter procedure done to widen the area again. This was obviously not the news we were hoping for, but we are thankful every day that her surgery went as well as it did and we have had few complications since then. We are also thankful only a catheter procedure was mentioned, and not another open heart surgery. We know she will need her pulmonary valve replaced at some point, but that will hopefully be at least 10 years down the road. So, we are waiting to see what her echo shows in November, and then we will know more.