Cardiology Appointment

Tyler had an EKG, echo and quick pediatric appt today. His echo looked really good. There is some leakage in certain areas which is alright and can even be present in normal hearts. There is a narrowing where they enlarged the aorta using a homograph. Overall, the heart is doing better compared to the last echo a month ago which is great news. The goal is to keep Tyler healthy until his 2nd surgery, which he will hopefully make him much stronger and more able to get through a sickness, which would be very hard for his heart now. He got his first Synagis treatment today which is a monthly medication protecting high risk children from RSV, a common winter virus. Scott and I have had a pretty bad cold for the past week. I was pretty scared that Tyler would get it and we are trying our best to wash our hands and keep the kids away from each other. Instead of worrying about Scott getting sick, we just worry about it getting passed onto Tyler since it could be devastating for his heart. If everything goes well in the next 2 months, Tyler will have his next cardiology check-up at UCSF during his heart cath at the very beginning of January. They are hoping they will also be able to do the second surgery, Glenn Procedure, which routes oxygen-poor blood from the upper half of the body (superior vena cava) by connecting it to the pulmonary artery—which then routes blood to the lungs, 1-2 days after the cath. That would be a great Christmas present if we get to that point. Dr. Azakie, the surgeon, and Dr. Title, who does the cath, will closely examine the results, and determine what can and needs to be fixed in the second surgery as well as doing the Glenn Procedure. They want to fix as much as they can of the smaller problems ie. enlarging the aorta, fixing any leaking valves, etc, since he will hopefully only have 1 more major open heart surgery that is done much later at 3-5 years. His sats were 96% which is great and very good for his brain. His blood pressure is also looking much better with the higher numbers being higher and lower numbers being lower, whatever that means. It has been explained to me but I forget. I am sure after hearing it for the 100th time, I will eventually learn everything. For now, we are becoming quite the experts in heart disease. I think I am going to take it easy these next two months to get Tyler to surgery 2. It is funny how you look forward to getting to the next step because that means he will be stronger if everything goes well. We are quite blessed to have these two little guys in our life. As Tyler was getting some shots today, I felt so fortunate to live where we do with such amazing medical treatment. There are kids all over the world that have so many struggles that we can't even comprehend. For this we are blessed!