WOW, I can't believe I haven't updated since Lilli was just going into the Cath Lab in Boston on June 6th!!! To back track a bit Lilli did VERY WELL in the Cath Lab but the conversation I had with the cardiologist who performed the cath was not so hot.
When we found out about Lilliana's heart defect {when I was 5 months pregnant} there was always the way far out there possibility of a heart transplant at some point. Every time we even questioned, mentioned, or expressed worry to a cardiologist/surgeon/nurse about a future heart transplant we were always told {in different words} "don't go there yet". Well, when Dr Marshall came and talked to me in that small little consult room on June 6th the heart transplant conversation became REAL.
To summarize Lilliana's situation she was a BAD candidate for the Fontan, her pressures are extremely high, and for the most part her oxygen saturation's are just going to be low {80-85%}. The Fontan helped, but not much. There is NOTHING more they can do surgically to make her heart or lungs function any better.
BUT the kicker is that Lilliana is more than likely NOT going to be a heart transplant candidate. Her left lung is practically non-functioning, and her anatomy is so complex that "hooking up" a new heart to her would be nearly impossible. There is still a chance it may be an option or potentially a heart and lung transplant {VERY rare in pediatrics and extremely complex}.
I will NEVER ever forget that conversation, it was unreal that at 4 years old this conversation was actually happening. I was told I should take her home, enjoy her, and let her grow and stay as healthy as possible for as long as possible. I was heart broken, angry, and freaked out.
Something very quickly calmed me. It was like for the first time I was being told to go live life! Let her be a kid, do everything you can with her, and enjoy every second. And guess what? Now that we are home miss Lilli is THRIVING! She is gaining weight, running around, and her oxygen is close to 90% at times! PURE MIRACLE.
Thank you for all of your continued prayers. God is good.
