10.27.2012

A Glimpse at the Possible

This week we took Lil' Bit in for her routine echo-cardiogram.  The doctor was generally pleased with her growth and development.   The echo looked good--said her heart was very photogenic!  Her pressures are still roughly the same they have been for the past year.  It's frustrating that they have not gone down, but it's excellent that they haven't gone up.  In addition, the secondary characteristics they look at to see if anything is amiss all looked good as well.  Dr. S even downgraded her severity from "moderate" to "mild-to-moderate."  Not much, but we'll take it.  She'll go back in March for another echo and then he'll decide when to do a heart cath.  Depending on the results of the heart cath, they'll decide if they can start to ween her off the meds to see whether she can maintain her pressures with fewer meds.  Wouldn't that be nice!  Dr. S. also said we could expect her to have a pretty normal childhood.  That was wonderful news and we left feeling pretty good.

But the best part of the week was the surprise call we got on Friday from Dr. S.  He had spoken with Dr. T, who had done Lil' Bit's heart cath and who had several other patients also missing a pulmonary artery.  There was one woman they had been following for a while who was now 33.  She had both an absent left pulmonary artery and a VSD, making her comparison to Lil' Bit pretty close.  She also had some other issues Lil' Bit doesn't have for which she had needed surgery, but in terms of problems from the VSD repair and absent pulmonary artery, she had had none.  And the best part--she currently has an 8-month-old baby!  Although we had previously been hopeful for her future when we heard of a very active and athletic 13-year-old who had a missing pulmonary artery, to find out that, at this point, nothing is off the table for Lil' Bit's future is huge.  Getting this glimpse at the possible makes it so much easier to keep trudging through the complicated med schedule every day.  Lil' Bit is an amazing kid.  And, if she wants, she may get the chance to be an amazing mom.  Yes, it probably sounds crazy to be worrying and thinking about that for a kid who isn't quite two.  But to me, it puts her one step closer to normal; one step closer to being able to do anything she wants.  To me, it means the world.

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