Thursday, April 17, 2014


I've been playing with Eli this morning and reflecting on the past year.  His Fontan (third open heart surgery) was one year ago today.  One year ago today the waiting room at St. Vincent's Hospital was dotted with colorful tshirts that read "Eli's MVPs".  The town of Washington was dotted the same way.  Eli's FB page was filled with photos of people wearing their shirts in a show of support for Eli.  We also received innumerable messages of support and prayer from many people.

It was a long surgery since the Fontan was expected to take about 5 hours and during pre op testing we found out he also required mitral valve repair.  In addition to that he also was getting his pacemaker so he spent nearly 8 hours in the OR.  Initially he was doing very, very well.  In the coming days he developed some complications that turned into major complications.  All in all that admission was seven weeks long. 

Because you all follow him so well, I'm not going into details about the events of the year.  Let's just say that of the last 365 days, Eli has spent nearly half of those as an inpatient.  And when he's not been in patient, he's had some multiple outpatient issues to deal with such as home administration of IV antibiotics through a PICC line or his ongoing therapies. 

Throughout the past year we've faced many things we never imagined we would.  I'd love to say it's all behind us, but that isn't true.  Congenital heart defects do not "go away".  There is no single surgery, procedure, medicine, or exercise to cure him.  A transplant is not the answer, even if he requires one someday.  Now in addition to his heart problems he has a whole new set of challenges because of the strokes.  Because of all that, we've grown closer as a family.  We've been made more aware of the incredible power of prayer.  I wish Eli never had to go through these struggles, but because he does, he, and the rest of us, will be better because of them. 

There are no words to express the gratitude we have for all the prayers, hugs, meals, donations, gifts, and support from all of you.  Thank you isn't sufficient and I don't know what the next best words are.  Please know that we know how blessed we are by all of you.

To end, I thought I would lighten the mood by telling you how Eli celebrated his Fontan-iversary this morning:  He locked me out of the house while I walked Albert.  Yep, we party hard around here!

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