Appointment with Surgeon

Today was our appointment with the surgeon Dr. Tam. We were scheduled at 2:00pm, but unfortunately Dr. Tam was called into emergency surgery about 1:30pm. We spent 2 hours getting to know Cooks Children's Hospital. Finally at 4:00 we were able to meet with him.

As you may imagine we had a trillion questions.

Q: What is his mortality rate?
A: I can't remember the last one, but it is really low, about 1%

Q: How many TOF surgeries have you performed?
A: I have been doing this for 13 years and perform about 300-400 a year.

Q: What are the risks?
A: Oxygen saturation during surgery with heart-lung machine, mortality, and blood transfusion, which could contain disease such as Aids.

Q: How long should we wait before we do surgery?
A: There are no medical advantages that we know of to wait for her to reach a certain weight. I would recommend in the next 2 to 3 weeks.

Q: Will they remove the valve or be able to save it?
A: We try to save the valve when at all possible but if her annulus (the ring around the pulmonary valve) is to small we will have to cross cut the pulmonary valve or remove it.

Q: What is the size of the annulus in an infant her age?
A: About 10 - 12 millimeters

Q: What is the size of Kelseys?
A: According to the echo it is about 5 millimeters, but we won't know for sure until we get in there.

Q: If you have to remove the valve what is the risk of her right ventrical enlarging?
A: Your cardiologist will monitor her. When it gets to a certain size she will then require a valve replacement. I have had some as early as 3 years old and others as old as 25. Typically speaking on average at about 15 years of age. This is a slow process and takes many years for this to develop.

Q: What about the damage caused from the right ventrical enlargement?
A: Once the valve is replaced the heart will return back to it's normal size, as long as it doesn't get to enlarged. That is why she will be monitored by her cardiologist.

Q: What at happens if we elect not to do surgery?
A: Some officials would intervene.

Q: Will she be limited to sports or other activities?
A: Definitely not, however as she gets into or after highschool she may not be able to be a marathon runner. She would get tired easier than someone with a normal heart.

We are tenativly looking at the surgery on September 1st or September 15th. We are waiting a call back from Dr. Tam's secretary to find an opening in his schedule. We will know tomorrow.