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

  • Concessions

    Concessions

    Short Version: Yes, we are still inpatient. No, we still don’t have answers. I figured we’d get that out of the way 😉 The long version: Katja’s MRI/MRA were negative for any significant findings or changes. Her EEG was normal. Her swallow study was also good. PT/OT have been stopping in daily to find ways…

    Read more: Concessions
  • Helplessly Hopeful

    Helplessly Hopeful

    Helplessness is never a good feeling. When it’s yourself it can feel terrifying but when it’s your child, it’s maddening. Katja’s Chorea continues to worsen. 3 months ago she was a fully functioning independent 8 year old that was recovering from her 3rd open heart surgery. Now, she’s a fully dependent child that can not…

    Read more: Helplessly Hopeful
  • Hopeful for a New Year

    Hopeful for a New Year

    My absolute hope for 2024 is answers. Why does this keep happening? Why isn’t she responding to meds appropriately? Why is she getting worse instead of better? Why after everything, her? We as a family are heading into this New Year with hope. Hope for answers and hope for Katja. While I don’t have any…

    Read more: Hopeful for a New Year

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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