Today (November 8th) we visited the pediatric Cardiologist, Dr. Stock. He is such a terrific DR and we are so lucky to be going to him.
They did an echocardiogram (DEFN: An echocardiogram (also called an echo) is a type of
ultrasound test that uses high-pitched sound waves that are sent through a device called a transducer. The device picks up echoes of the sound waves as they bounce off the different parts of your heart. These echoes are turned into moving pictures of your heart that can be seen on a video screen.
Transthoracic echocardiogram (TTE). This is the most common type. Views of the heart are obtained by moving the transducer to different locations on your chest or abdominal wall.
The results looked very good and he said her heart is functioning very well. She has some leaking in her tricuspid valve, but apparently she has had that since birth so he's not overly concerned about it because the volume has not been increasing. He will have them address that at her next heart surgery. (DEFN: The tricuspid valve is on the right side of the heart, between the
right atrium and the
right ventricle.)
Also, they did an EKG (DEFN: An electrocardiogram (EKG, ECG) is a test that measures the electrical signals that control the rhythm of your heartbeat.)
Those results looked great as well and nothing had changed since her last EKG about 4 weeks ago. So he is taking her off 2 of her medications: captopril and lasix because she's functioning so well and has too many meds as it is.
She has gained 1 pound in a week and she now weighs 11 pounds. They are so pleased with her growth and she's growing right on schedule (and even a little ahead.) They charted her on a growth chart today and she is between the 15th and 20th percentile. Wahoo!
The indicator of when they will do surgery next is contigent upon her weight and oxygen saturations (SATS). She is currently "satting" between 75 and 85, and really she is about 82/83 range. As she grows, her sats will drop because of the additional work on her heart and shunt. Dropping sats is what they will be looking for and expecting to see with her growth. When she is satting in the high 70's, 79, 78, they will schedule a heart cathetrizaion. Just to give you an idea, a "normal" body needs 95% to 100% saturations in order to be receiving the proper amount of oxygen to function. Her saturations are lower because her heart is not "fixed" yet and she has mixed blood in her veins.
(DEFN: Cardiac catheterization is a test to check your heart and
coronary arteries. It is used to check blood flow in the
coronary arteries, blood flow and blood pressure in the
chambers of the heart, find out how well the heart valves work, and check for defects in the way the wall of the heart moves. In children, this test is used to check for heart problems that have been present since birth (
congenital heart defect).
This heart cath will most likely be done in January. It will be an overnight procedure. So we'll get another night at St. Joe's. We are missing all of our nursing friends there. So that will be a good excuse for a reunion. Then depending on how that looks, they will possibly schedule surgery for late Spring (unless Brynlyn tells them differently.) When she is consistently satting around 75, they will go in and do surgery.
We are really enjoying this time with her. It is still very scary and busy and late nights and always checking her breathing and giving meds and trying to do home PT, and playing, and tummy time...aagh...yes, I need a nap. ha ha
But we are being so blessed and Brynlyn is being blessed. She is doing so well (knocking on wood) and we are grateful to see her thriving as well as she is.
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