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

  • Stranger Things Have Happened

    Stranger Things Have Happened

    I know I’ve been a bit silent the last 2 weeks. I wish this was due to a much needed recovery from being impatient but unfortunately not. It’s been a super busy few weeks for us. Lots of follow up Dr appts, therapy consults, permanent wheelchair sizing and trying to navigate life with our new…

    Read more: Stranger Things Have Happened
  • Rainbow Power

    Rainbow Power

    The Princess on wheels has been a little down about her new chair. She said it was “dark and sad looking”. A few hours later, some tape, accessories and a aching back… And we have a very colorful Rainbow Powered Ride 😉 She is super happy about it. These days I’ll do anything to get…

    Read more: Rainbow Power
  • New Reality

    New Reality

    Katja’s home!! 🤗🤗🤗 It’s been a long week. I know many of you are just as heart broken, frustrated and upset as we are for Katja. I wish I could give all of you answers but we still don’t have any ourselves. Everything being negative, though not helpful in pinpointing cause, is an answer. It…

    Read more: New Reality

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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