Thursday, August 29, 2013

Home, Sweet, Home

Even though we've been home for 5 days already, we're still unwinding. The emotional upload that occurs before a surgical trip takes a while to download from.  This picture pretty much sums it up...




Upon returning home this past weekend, I choked back tears as I watched my little girls so excited to see one another.  It feels great to be home, and having Zoe doing so well is icing on the cake.  I was concerned we'd return home and she'd need close monitoring, but that's not the case.





Zoe had her follow up appointment with her local cardiologist, Dr. Stock, today.  He's been our lifeline in Phoenix for the past 4 years and it was great to see his face light up when he saw how wonderful Zoe looked.  He fed her ego, calling her a Super Star; then let her rule the office for a good hour.

Overall, Zoe sounds and looks wonderful.  She had a full work up (minus chest x-ray which wasn't necessary).  Her ekg, spotless.  Sats 87-88 (normal with her fenestrated Fontan).  BP normal.  Echo, great.  She has no tricuspid regurgitation, LPA looks wider than ever, aortic arch looks great, no fluid around heart or lungs, function is very good.  Liver is a "2" (measurement of how taxed the liver is from new pressures) and will decrease as her body acclimates to her new circulation.  All-in-all, we're doing great and Zoe's heart is still smiling.

During her echo, Zoe asked if she could see her heart smile again.  The echo tech was super confused :)  When the tech showed me her Fontan, she said, "wow, who did her surgery?"  I told her "Dr. Spray" and she smiled.  Pretty impressive scary when the echo tech can tell the difference between surgeons.

Zoe is due back for another cardiac visit in three weeks.  We're beginning to wean her diuretics today and she'll be completely off of them in 2 weeks.  Again, I'm so impressed with Zoe's ability to recover and heal.  Dr. Stock is happy, we are happy, Zoe is happy.  It's time to LIVE and GROW UP and BE HAPPY. 

One of my favorite "must get photos" is Zoe and I in Rittenhouse Square (a fabulous little park in Center City).  Every in-patient stay at CHOP, ends with the same photo.  I look forward to this photograph every year.  It's a marker of our journey and we'll be growing the collection as they years go by.

 
(2010, 2011, 2012, and...)

2013!!!

For all my heart moms heading into the Fontan soon (I know there are several), I'm planning a "Our Fontan Success Story" post soon - to highlight, what I believe, played a large role in Zoe's success.  Stay tuned...



159 comments:

  1. I'm not a heart mom, but I am definitely looking forward to that post. I love the pictures in this post - always do, but something special about these. I am incredibly happy for you all. Much Love.

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  2. :) So happy for you all. -CML

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  3. What a fabulous idea to take a picture in the same spot each year of your journey! I am so happy that Zoe is doing so well. I have heard a lot about the difference a surgeon can make. Have you read Walk on Water by Michael Ruhlman? I thoroughly enjoyed it. I read it once when I was pregnant with my baby after we discovered he had many CHDs. I recently just read it again-quite different 8 years later:-)

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