Tuesday, August 12, 2014

It's confirmed... Heart failure


I'm sorry for not updating the blog more recently with moving and with attempting just to log in on my phone I couldn't get it to work :(

Lilliana had a heart cath last Thursday and the procedure went amazing, the results on the other hand we not so amazing.  They showed that she is in severe heart failure. Her fontan pressures are more than double what they should be, in other words its failing :( Our dr's are the U of MN are in the process of transferring all the results to Boston. They are unable to even attempt the transplant here with her complex anatomy. We are waiting to hear when we can get an apt in Boston for a transplant evaluation. 

We have no clue what the evaluation will show but more than likely we will go out there with the plans of not returning until Lilliana has a new heart (and possibly lungs). We pray that she is a candidate and that she will be able to be listed right away. In order to be on the list we will have to move to Boston as we will need to prove residency and be able to get to the Hospital within 3 hours of "the call". The whole process of moving out there is overwhelming in itself not to mention the process of Lilliana getting a new heart (and what that would mean for another family)!!!!

If she is not a candidate.... well I don't want to think about the miserable process of watching her slowly diminish before our eyes with no hope of intervention.

I have no clue what the future holds (and for a planner like me it's unbearable). We just moved into our new house after moving a ton in 3 years... I was so looking forward to having a stable place to live, Lilliana starting Kindergarten, me being able to work more....

God has other plans. 

Financially this will be extremely difficult.  Just living expenses out there for a year will be over $30,000 a year not including medical expenses and the trip out there. I have no clue how this will all work but I know we will be there if there is anyway possible she could get a new heart. 

I pray that God takes this whole process over, I pray things just fall into place. I'm a total mess of stress right now. It's like 5.5 years of all the worry, fear, anger, sadness have all culminated into one massive horrible feeling that I can't shake. I'm trying to stay strong and positive but after 5.5 years of this, I'm getting exhausted :( I will fight for her and never give up but right now I feel defeated. 

Lilliana is doing amazing (besides being a little less active than normal and a runny nose) and you would NEVER know that she is in heart failure. She is just a perfect little girl doing all the normal kid things. I'm so sad for her that she wont be able to go to Kindergarten (which she was soooooo excited about). Her new backpack is already packed :( It just breaks my heart and I'm not telling her yet. Her orientation is next Tuesday and I think we will still go and keep life as normal as possible for as long as we can in hopes that she will be back home with a new heart soon being a "normal" kindergartener.

Photo: The dawn is coming... have FAITH! <3