After our last visit to the Heart Center, on Tuesday I was afraid, confused and angry. I am told to start looking for signs of heart failure in my 5 year old little girl. There is too much blood going into and staying in her heart which is going to cause her heart to enlarge which in turn is going to cause heart failure. WHAT?!
I knew the day would come when Monique would need another surgery and I had accepted that fact. I never thought I would hear those words though. It was like i had accepted it but in denial of it all still.
So I am now in a desperate search for answers and information. I seem to have hit a dead end. I was content with the research I had done after Monique was born but now it is not enough. I want to know what is next? What are the procedures? What has worked in the past? What is normal for my child who now faces another surgery? Have others had the same experiences? What are the latest advances in research for Truncus Arteriosus Type 2?
I don't know where to turn. Information is so scarce. I have not met another family dealing with this particular CHD. Do they exist in my area? If so, I would love to talk with them and share...
... to be continued...
Then & Now
3 years ago
2 comments:
Hello! Have you looked through the links on Caden's page? There are many Truncus kids linked to his page, and I'll add you guys too, if that's ok. There is also a link to the Online Truncus group that I like a lot. I don't know if you are member already or not, but there are about 250 of us... all Truncus families or Truncus adults. Nice to meet you, and I'll talk to you soon.
Ashlea
Yes, I have looked through the links on Caden's page, but it is still all general information about the CHD. I am not a member of that group but I will look it up.
It is ok for you to add us, I would like that very much.
I just feel like I have hit a stone wall...
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