Monday, March 31, 2014


In addition to God's faithfulness, one other thing has remained steady over these past five years: the love and support we have been shown by friends, family, and perfect strangers.  Y'all are some of the most kind, caring, encouraging people I know. Seriously. Thank you for that.

Here's the Facebook, short-story version of how Friday went:

Details to come, but in the meantime: all is well for now and God is good for always. 
Thank you for the love and prayers!

For those of you who want to know those details, read on.

Before I get into the technical jargon, let me take a minute to encourage any new heart mamas who may have found their way to our blog.  You see that silly, totally relaxed kid on the exam table up there? Just two years ago that photo would have looked very different.  You would have seen anxiety written all over his face, lots of tears, a group of people trying to entertain him and hold him down, and one stressed out mama.  There are no photos of those days, though, because it was impossible to take one through all the chaos.  BUT.  Take heart, be encouraged.  Happier days are ahead.

So, Friday. It was a VERY long afternoon at the office, but we left with probably the best news possible.

The pacemaker interrogation showed that the battery has nine months of life remaining, which is expected.  Back in September it had just under one year left, so it is on track to be changed out sometime this year.  Ethan has only had a few episodes of atrial tachycardia in the past three months, which could all be explained by elevated activity levels, so there is no concern there.  Praise God!

While all of that is good news, the echo results were probably the most shocking.  Based on some symptoms I've noticed in Ethan lately, I completely expected to hear it was time to do some work on his conduit.  However, the pressure gradient across the conduit has remained stable (unchanged, even) from his echo in September! Amen?! At this point, based on what the echo is telling us, Ethan's heart is a-ok.  His function is great, the conduit is stable, and we are thrilled!

Dr. I's best guess is that Ethan's recent tiredness during activity is related to him slowly outgrowing the conduit.  In a normal heart, when blood flow increases, the vessels expand to accommodate.  Since Ethan's conduit can't expand, it's having to tolerate increased blood flow while he's playing, which creates higher pressures in his heart.  When he tells us he's tired, it's likely his body recognizing that a whole lot of blood is trying to get through a less-than-ideal sized conduit, and he's having to self-regulate.  The echo tells us that his heart is not being negatively affected by those times, so we're okay with this for now.

So, what are our next steps? For starters, we'll go back in another three months (June 24th -- Jeramie's and my eight-year anniversary!) to check-out the pacemaker information. If the battery is doing okay (six months, or so, remaining) and Ethan's symptoms haven't increased, then we'll continue with frequent visits.  Once we start the conversation of replacing the battery, Dr. I will schedule a cath to take a closer look at the conduit (which could turn into an interventional cath, if needed).  If the conduit does not need surgical (open-chest) intervention, then we'll proceed with changing out the pacemaker battery only.  If the cath shows that it's time to replace the conduit, then both procedures will be done together.

The "if, then" scenarios get a little crazy, but we have a clear treatment plan.  Clarity is what I asked for and clarity is what we got -- thank you, Lord.  

Aside from my baby facing some type of surgery this year, the biggest pill to swallow (for me) is that it will likely happen soon after he starts kindergarten.  I am not happy about the timing at all, but I'm working on giving that to God and focusing on keeping Ethan safe and healthy.  In the meantime, we're going to squeeze out every ounce of spring and summer fun! 

Thank you for checking in and for continuing to pray with and for us.  We are so grateful.

1 comment:

Sherry said...

I love it! Praise God! I will be in prayer for God's timing with Ethan's starting the Big K. That alone can be such a big change in a little one's life so I can only imagine your anxiety with mixing that with a big surgery. But I love that you continue to praise God for all that he has done. These are the "real" blessings of life! :-)

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