We were given some bad and scary news about Cemaias heart, but I havent been able to expand...I know a lot of people dont understand what I mean when I say that Cemaia isnt a Fontan candidate.... The Fontan is the third surgery for HLHS that Cemaia needs to have to keep her going. If she doesnt qualify for it than we are looking at a heart transplant (if she can qualify for that and be able to get a heart in time) Right now Cemaia doesnt qualify for the surgery... The pressures in her heart are 17 and 18....ideally they should be a 10, but would accept up to 14, but shed still be considered a high risk candidate. Cemaias heart function has also gone from low-normal to moderately reduced. The squeeze and the relaxation of her heart are not good. Basically, her heart is failing. I am heartbroken, Im pissed, Im scared...Ive been crying out for help for 3 months with no response from her doctors until recently. I literally had to start taking Cemaia into her doctor every week and calling every other day so they would get tired of seeing me and just do the heart cath. We are being referred to the heart failure team so we can come up with a plan to hopefully get Cemaias pressures to come down. Then we will repeat the cath in 6 months. We are hoping that our new team will get us on the path to becoming a Fontan candidate. We would appreciate prayers and positive vibes...we really need them right now. And thank you for all of the support you have given to our family these last few days. We appreciate all of you
Posted on: Sun, 24 Aug 2014 01:45:48 +0000
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