Graysen's Echo

Graysen had an echo this morning to look at his heart. Before I explain the results of the echo, I want to explain what I have learned about having a heart baby.

When I first found out about Graysen's condition, I knew that he would have a set of procedures throughout his life. The planner in me wanted to know how many surgeries he would have and when each would occur. I remember drilling the surgeon: "Would it be four?" "Yes." "Could it be five?" "Maybe." "Could it be six?" "Maybe." "Could it be seven?" Lee finally stopped me. It has taken me a year to understand, but I think that I am finally accepting that each case is different and cannot be planned out in advance. Graysen's cardiologist does not like to talk about anything more than three to six months out and what needs to be done at this moment in time.

I know that he will continue to have surgeries and procedures throughout his life. I know that I will not have a lot of notice before each one occurs and that the goal is to maximize the time between them. I also know that Lee and I are extremely blessed to have Graysen. He is very healthy compared to expectations and continues to amaze his doctors with how active and strong he is.

Graysen's echo showed moderate right pulmonary and left pulmonary stenosis. We first found out about this problem in November, but understand it more today. There is narrowing and turbulence in the pulmonary artery where the shunt has been stitched to it. (The connection of the shunt to the right ventricle of the heart looks great. The flow is laminar until the connection to the pulmonary artery.) The pressure estimate for the right artery is 60. This is 75% of normal systolic pressure (80), which is when it is time to start talking about the possibility that something will need to be done to alleviate pressure.

There is a missing piece of the puzzle. Graysen has a leaky valve going into the right ventricle of the heart. The doctor has tried twice (November and today) to get a pressure gradient measurement at this point, but cannot get a clear reading. This reading would give more information about the severity of the pulmonary stenosis.

The plan going forward is to try another echo in June. If the results are the same as the past two (unsatisfactory in regards to amount of data and condition of pulmonary artery), he will be scheduled for a sedated echo in Greenville. If the sedated echo confirms the stenosis, the first corrective step would be a cath procedure at MUSC to obtain detailed pressure measurements and balloon.

I do have to say that Graysen was very good during his echo. I allowed him to have his first sucker during the echo. He loved it and was so amazed that he laid quietly while licking it.