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

  • Headaches & Steroids

    Headaches & Steroids

    That is all that is keeping us here. Headaches and steroids. Katja is doing amazing from a heart standpoint. Her function looks great and she has so much energy. She’s been walking around the hospital for the last 4 days, enjoying the sights, the gardens and meeting new heart friends. Her appetite is returning to…

    Read more: Headaches & Steroids
  • Can’t Keep Her Down

    Can’t Keep Her Down

    In usual Katja style, she isn’t going to let a bad afternoon keep her down. By late this afternoon she was feeling so much better, she asked to go see the Gardens. ❤️

    Read more: Can’t Keep Her Down
  • The Curse Of Day 3

    The Curse Of Day 3

    If you’ve followed Katja’s journey in the past, you’ll remember the curse of Day 3. If not you can read about it in her blog updates under “Giving up is not an option”. For some reason after every ohs on Day 3 we hit a pain wall and have a set back. I try so…

    Read more: The Curse Of Day 3

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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