Monday, December 30, 2013

A Bitter-Sweet End to 2013

“I think we made the right decision.  But I do feel disappointed.”  This was (more or less) exactly what I said to Kim today on our car ride home from Children’s Hospital of Philadelphia. 

Our little Leo had a scheduled appointment there today with C.H.O.P.’s cardiology department. 

A little background: Wolf-Hirschhorn children are prone to many and wildly varying medical challenges.  One such challenge is something called an Atrial Septal Defect (A.S.D.), or, put more simply, a hole in the heart.

We knew Leo had this condition but we have not been rushing to take any corrective action.  Leo’s A.S.D. does not pose an immediate threat to his health, and up until now Leo has been too small for elective (or semi-elective) surgery.

The bottom line here is that Leo has a hole in his heart, and it needs to be repaired.  He’s not in any immediate danger, but if his A.S.D. goes untreated, the consequences for him could be dire at some point 10 to 20 years in the future. 

Today’s cardiology appointment was to determine what our options were.  We had been holding out hope that Leo would be eligible to receive a catheter-based procedure that would be a lot (and I do mean a whole lot) less invasive than open-heart surgery. 

But Kim and I were both disappointed to learn that the hole in Leo’s heart is just too big for this approach.  We spoke with a very-approachable, down-to-earth, cardiologist who just happens to have made the catheter-based procedure his life’s work.  When he said “If it were my child, I would not do this” we knew our decision was made.

Leo will have open-heart surgery sometime in the early spring of 2014 (like, april-ish). 

So, tonight, Kim and I are a little disappointed because we won’t get the easy option that we had hoped and prayed for.  But, we are a whole lot grateful.  We are grateful for a God we can trust, even when He doesn't give us exactly what we want.  We are grateful that our Leo is healthy enough for us to even have this conversation.  We are grateful for the family and friends that will join us in praying for our little man in the days ahead.  We are grateful to live within driving distance of the world-renowned C.H.O.P., and the great, personable, doctors we have connected with there.

Today’s visit to C.H.O.P. was a kind of sobering end to 2013 for us.  But it was also a reminder to be grateful for all that we have, and to not take for granted the children that God has blessed us with!

1 comment:

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