So frustrated!!!!

[derekzmom]

I am so frustrated!! I sent an email to Dereks cardiologist inquiring about the On-X aortic valve if a bailout was needed from the Ross Procedure, and the response I got totally blindsided me. He told me that the On-X probably wasnt an option but they would use the lowest anticoag level and ASA 81 mg.... but that the Ross MAY still be possible. Boy am I glad I asked about the On-X... Not once has anyone told me that the Ross only had a minimal chance of working and that he would more than likely be gettting a mechanical valve. The reasoning behind not doing the Ross makes sense, Derek had dacrom patches placed in his septum for an VSD when he was born. The muscle that they would have to take when they took out the pulm valve encompasses these patches and compromises the tissue, therefore not making it a viable option as it would most likely fail. Fair enough. You think someone could have told us that before I started asking questions and found it out on my own. If I hadnt have asked about the On-X, we would not have found this out until the day before his surgery.

I have since spoken with the surgeon and apparently there has been some miscommunication (or lack thereof) with what the would be doing with Derek. Now that we know that a mechanical is the probability it changes things, do we wait until his valve becomes worse to replace it, or do we wait until he is bigger and can put in a biologic valve, or do we do it now? Im leaning towards waiting until his valve gets worse to give hime a chance to grow and the possiblity of a biologic or a couple more years before a mechancial to avoid INR's and anticoagulation.

Opinions??

 

[Fundy]

I think waiting a few years once a surgeon recommends surgery is a bad idea, as at that point there is usually about a 25% chance he wouldn't be alive in a year and waiting two may be about a 50% chance.

If he definitely will outgrow the valve and need a replacment later, I think a tissue would probably be better as there is a very good chance he wouldn't need warfarin.

However, if he wouldn't outgrow it maybe the mechanical would be better. Why isn't an On-x valve not a possible choice for a mechanical. It seems strange to rule it out?