Confessions of a Mended Heart

Katja's Journey to (W)hole Heartedness

Welcome!

Welcome to Katja’s blog. A place for information, updates and our “laugh instead of cry” humor of living with a child with CHD (Congenital Heart Defects). Take a seat and prepare for a long emotional journey of our ups and downs. Feel free to browse posts about Katja, her heart and her previous surgeries. Newest updates are available below:

Updates

  • Failure Isn’t An Option

    Failure Isn’t An Option

    As I always say… “No news is good news”.

    We spent the summer blissfully appointment and hospital free. Katja was doing great and we very much enjoyed the break.

    Two months…. We got two.

    Early Sept I started to notice her a little off. I had hoped it was just the Tween years upon us. Then we saw Transplant…..

    There is significant changes to her pulmonary donor valve. Some minor/moderate ones to her aortic. Then her DSA’s (donor specific antibodies from her donor) increased with new types showing. Yesterday she had repeat labs. Her BNP (measures heart damage) increased 3 times in 2 weeks. Her immunosuppressant levels plummeted too.

    Seattle is consulting with DC and Boston. We still don’t know what rejection looks like in PHT kids. We have no way to test the tissue either. Her teams are scratching their heads as to what is causing this.

    For now, we are continuing to repeat labs, repeat her echos and watch/wait. Pray for Katja, she needs a break. This kid has suffered so much through her short life, she deserves a break 💔

    Jenn's avatar

    Written By:

    Jenn

More Updates

  • Here we go again

    Well if all the chaos wasn’t enough, I received a call from her surgeon today. They had to move the date again. All her pre-op testing was moved to Tuesday (20th) with surgery now set for Wednesday (21st). Lots of moving pieces and reason why that I don’t have a chance to go into but…

    Read more: Here we go again
  • The last minute shuffle

    The last minute shuffle

    With all the chaos going on before we leave (I’m looking at you refrigerator that decided to break down yesterday 😑) what’s a little last minute date shuffle? Received the call this morning that the surgery date has been moved from Friday (June 23rd) to Thursday (22nd). Looks like we won’t make Legoland before surgery…

    Read more: The last minute shuffle
  • What’s life without a little chaos

    What’s life without a little chaos

    It’s the 10 day count down! Things here have been super busy. Lots of end of school year activities, last minute appointments and getting everyone ready for us leaving. We’ve been trying our hardest to keep Katja’s day to day as normal as possible but with the heat and her heart, she’s been pretty tired/crabby.…

    Read more: What’s life without a little chaos

About Us

We are a fun loving family of 7. I’m Jenn, the Mom and words behind the blog. Dad Jori is the IT backbone of making sure I don’t go crazy over features. We have 5 beautiful children. Nevaeh (17), Twins Arianna & Araceli (15), Katja “Our Mended little Heart” (9) and Gryffin “Finn” (4).

Save Katja’s Heart: Urgent Flight for a Rare Transplant

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