Friday, December 27, 2013

Health Update

My little Livie Lou has been blessed with a decent immune system, thank heavens.  So far in her life she has only suffered from colds *knock on wood* and has managed to avoid the dreaded RSV and rhinovirus so many of our fellow heart friends suffer from.  Her colds do last ages longer than normal because of her sweet little heart but she is proving to be strong and relatively sick-free.
But that's boring!  Gotta keep mom on her toes somehow.  As I mentioned on her 18 month post, Olivia's sats just haven't been where they should be.  We were hoping that her 73-80 range was caused by her last epicly long cold.  Well, the cold is officially gone and the sats are the same.  I wasn't really surprised.  Her colds in the past haven't affected her sats at all.  Anyway, we watched through the holidays as instructed by Dr. McCandless (through Christmas anyways) and have officially been added to the "to be scheduled" list.  We should have an appointment scheduled by early next week for a sedated echo sometime next month.
Now, this is all speculation on my part and I AM trying to prepare for the worst (within reason) so here is what I think could possibly, maybe happen with this echo.
Option 1: Hopefully the most likely.  They will find narrowing due to scar tissue, again.  Or there will be collaterals.  A cath will be needed to balloon or stent or coil.  I have already sat through two 2 hour caths.  It's nerve wracking but not nearly as bad as the nerve wracking you get with OHS.  Olivia has never done anything tricky during a cath so that's a bit to comfort the nerves.
Option 2: Hopefully not likely at all.  She will need her fontan early.  For those non-heart moms, the fontan is the third and last OHS (until transplant is required, if ever) for Livie.  Call me paranoid.  Call me crazy.  But I am trying to prepare for this news just for the fact I do know at least two kiddos who needed their fontan early.  This is the one she is supposed to have at age 3.  But, this girl really likes to do things on her own timetable.  My theory: the reason Olivia needed her glenn asap is she outgrew her sano (the shunt in her heart from her first OHS) She just isn't your typical teeny tiny heart baby.  She is growing beautifully.  So my fear now is that she is outgrowing her glenn too and needs the extra help the fontan provides.
I know this post provides much more information than any of you probably care to read about.  Mostly, this is for my sake.  Journaling and venting/worrying all in one.

1 comments:

Dawn Wright said...

I love your posts. Keep them coming. I could read a new one every day.