Myo Myo Myectomy or not....

I haven't updated this in a few days because I really don't know what to say.  Steve and I met with the surgeon last week and he said he would be willing to do the myectomy and then proceeded to describe and unbelievably technical and risky surgery where they would not only take out a good deal of his septum but also cut out a lot of muscle in the ventricle.  It is so difficult that in discussions he had with his colleagues there was suggestion of removing Porter's heart completely, working on it and then putting it back in.  We didn't come here for an oil change people!  They started the transplant work up here but were not able to officially review Porter at the Medical Board Review because they didn't have the surgical consult but we were given various reasons why they wouldn't consider him for transplant here~ all of which I have found out from meeting with the individual specialists is false information and was simply assumed.  So our level of frustration has gone from 500 to 1000 over the last 48 hours and we are wondering why we are here.  It seems every week now we are waiting for a different doctor to get back in town so we can have a meeting or get answers and we're waiting weeks at a time.  We will be contacting patient care manager next week, maybe they can help us get some consistency.

Porter however is doing well and has been gaining a little weight everyday.  He's started pushing up on his legs when he's on my lap and thinks it's hilarious to be lifted into the air.  He's getting more stable sitting in his exer-saucer and is taping the soft piano with his feet while he's in there. 

One thing is for sure~ Porter and Oliver are ready for some football!!


    Leave a Comment