Now, yet again another long overdue update….. Surgery was originally
scheduled for this week. It has now been pushed back to Nov 13th at
the U.
We have been feverishly attempting to get a second option
from Boston in the hopes that just maybe they would say Lilliana has the
potential to have two ventricles (which would be a huge step in elongating the
life of her heart). Well today we heard
back from Boston and there is NOT a chance of her having two ventricles L they agree that the
Fontan is the next logical step.
Throughout this waiting process we have come to the decision
that Boston is where we would prefer her next surgery to be done. They are
ranked #1 in the nation for cardiology and heart surgery (where as the U of MN isn’t
even ranked within the top 50). We are so beyond thankfully for all the U has
done for Lilli but with her being such a unique and difficult case I feel in
the depth of my (motherly) heart that she NEEDS to go to Boston. I can’t fully say why I feel this way, other
than that I know if something goes wrong at the U of MN I will NEVER forgive
myself.
We are attempting to figure this all out… its daunting and
we are praying it will work out to get us there and not leave us in financial
ruin. Hopefully we will know enough very soon so we can cancel with the U. We
know the surgeon in Boston is already booked out through December.
Lilli is doing AMAZING as usual. I just don’t know how that
kiddo keeps up with her little heart working on overdrive. She is so excited
for her ECFE Halloween party tomorrow to wear her adorable Giraffe costume :)
Prayers for all of this planning to go as smoothly as possible!
