More details

I spoke with our cardiologist this evening. I asked about the mitral valve. The mitral valve is difficult to repair and articles on Shone's syndrome often mention that the prognosis is inversely related to mitral valve involvement. In other words, it leads to recurrent valve replacements as well as other complications. It was reassuring to hear that Dr L did not see "anything to cause concern at this time".

I also asked about the timing of the surgery as distinct from the cath. He had told us that the cath should occur within 2 months. He said he imagined surgery from 3-6 months and would definitely like it before 6 months and before flu season. That means we are looking at September-November or early December.

I cannot recall exactly what he said about gradient vs rate of flow. I think he said that the peak flow rate was 5 mm/s which calculates out to a gradient of over 100. If that was due to the aortic valve it would mean that Wren has critical aortic stenosis and in fact he described the numbers are "rather scary". To make sense of this, you ADD the gradient pressures to the regular measured blood pressure to get a sense of the pressure in Wren's left ventricle. His BP was high normal, around 100, so his LV pressures are around 200 which is very high and is the reason for the thickening of the heart muscle and the ongoing cycle of increased muscle mass in the sub-aortic area. This is for the scientists among you:

The aortic valve area can be calculated non-invasively using echocardiographic flow velocities. Using the velocity of the blood through the valve, the pressure gradient across can be calculated by the modified Bernoulli's equation:

Gradient = 4(velocity)² mmHg

A normal aortic valve has no gradient. If the mean gradient is <25 mm Hg, the stenosis is mild; if the mean gradient is between 25 mm Hg and 50 mm Hg, the stenosis is moderate; if the mean gradient is >50 mm Hg the stenosis is severe; and when the gradient is greater than 70 mm Hg, the stenosis is critical.

In other details, Dr L described the type of SAS (sub-aortic stenosis) as "tunnel" type. This is a more difficult type to treat and there are a range of surgical approaches. We will wait to get more information before learning what the surgical conference recommends and getting a second opinion from Stanford.

On a more cheerful note, here are some of the new words Wren has mentioned recently:

Olive
cake
house
big cat
bear
push bottom (to get my bottom off the chair so he can watch diggers on Youtube)
mama home
roll
spider
bee (he calls all insects bees, saying "bee, bite!")
sharp
dough
bread
ow head
hair