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

  • Time Starts

    She’s back. Surgery should take about 2.5hrs. She should be out around 11am.

    Read more: Time Starts
  • The Heart Of A Warrior

    The Heart Of A Warrior

    Yesterday morning Katja’s Dad found her convulsing on the stairs. She was rushed to SCH. She had multiple episodes while in the ER which was determined to be an AV block. Katja entered complete heart block for 14 seconds last night. She was immediately started on isoproterenol with full cardiac watch overnight. Her teams made…

    Read more: The Heart Of A Warrior
  • pneumonia, Blood Counts and Hospitals

    pneumonia, Blood Counts and Hospitals

    It’s been a really rough few months for Katja. She started with a minor cold in late Nov that progressed to pneumonia within 2 weeks. Since then, she’s had multiple antibiotics, steroids and medication changes including significantly reducing her immunosuppressants. However, her pneumonia continues to return. This is what lead to her being hospitalized last…

    Read more: pneumonia, Blood Counts and Hospitals

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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