SOS

After 5 months of waiting for Mac’s second opinion from Boston - calling every week and being told to continue to wait- I was fed up. I sent out an SOS to other Boston Heart Moms on FB to help me get a dr to talk to us. They got to work emailing and texting their cardiologists at Boston and boom! We got the call this morning at 6:30 am. I am beyond grateful! 
The dr there says Macsen’s heart is not beating in sync. Apparently this is written in his mri report from January but it was never brought up or explained to us as being significant. He believes with a special pacemaker we may be able to get Macsen’s heart to beat in synch. It’s a big “maybe” and “hopefully” and not a guarantee that it will work but if it does it could mean improved heart function and more time before he needs a transplant. He will talk to the surgeon up there so we will know more next week.
Through another new heart mom friend I was able to get in touch with the Director of Transplant and heart failure management at Boston and she will call me next week as well.
So the ball is finally rolling!