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

  • the Beat goes on

    the Beat goes on

    Katja is off Bypass! We are waiting on the update from her surgeon now. Hopefully she’ll be closed up and in recovery in the next 2hrs. I’ll update as soon as her Dr talks to us.

    Read more: the Beat goes on
  • No News is good

    No News is good

    As they say.. “No news is good news”. Latest update from the OR is that everything is going as expected. Getting into her chest took longer and her repair is taking a little longer than we wanted but things so far, are moving along. She’s still on Bypass but so far, so good 🤞

    Read more: No News is good
  • The Great Pause

    The Great Pause

    Katja is now on Bypass. It took longer than expected due to her previous surgery scar tissue and adhesions. These next few hours are the most crucial. Her heart is stopped completely while the machine keeps her alive. Her heart will be repaired and the team will slowly restart her heart and get it beating…

    Read more: The Great Pause

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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