Sorry to worry you guys, we could not get access to the blog (thanks Jon for getting us hooked back up). So here’s what’s going on…

I’m going to try and keep this straightforward because every time I try to write this in a way that tells how I’m feeling about it, it becomes an epic treatise.

Ramona is doing well at home with us right now. She came home yesterday after having a 5-6 hour cath on Friday at 8:30am. The surgeon came out to speak with us afterwards and said, “Well, we were in there a long time but we accomplished very little.” He went on to explain that he was unable to balloon the areas he had planned because of the amount of tearing he was seeing. He tried multiple planned locations and was unsuccessful. He said he did not have an answer for why this worked last time and not this time. He said he does not plan to try again. He also stated that he feels at this point that Ramona is not now and will likely not become a good candidate to have her heart defect repaired. He suggested that perhaps she could survive for quite some time, perhaps 10, 20, even 30 years without this repair.

The cardiology team is now going to solicit second opinions from other surgeons across the country and then conference and get back to us. We will hear back from them in late November. Even if they do abandon the plan to try and correct her heart defect, they will still treat her. As the effects of her defect progress she may require interventions to prolong or improve her life.

We of course know that anything is possible, that new treatments are developed as the years progress and that we have not yet heard the second opinions. We also know that none of us know how many years we will have on this earth. All that being said, I am heartbroken that we have come to this crossroads and am struggling to accept the fact that this is not all just going to go away.

Thank you for your calls and messages, it means a lot to us. Here she is this morning on a puddle hunt with Daddy.