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

  • baby Steps

    baby Steps

    Baby steps… Last night Katja had her first “bath” in a chair. We called it her “Spa Night”. She even had a hair washing shower cap. She definitely perked up after getting clean and walking a little. Today has been much better. Eating/Drinking have been limited. She’s on such high levels of narcotics that she’s…

    Read more: baby Steps
  • givIng up is not an option

    givIng up is not an option

    Today was a step back. Today was hard. Today was exhausting. Today will hopefully be tomorrow’s memory. Katja has been in severe pain since 6am. Even with a lot of Dilaudid on board. Around 10am, I did what I do best…. I went into Mama Bear mode 😡 By 10:25am the entire unit was outside…

    Read more: givIng up is not an option
  • Popsicles and pain

    Popsicles and pain

    It was a long night for Katja. She was pulled off a majority of her meds and started on oral medication. Unfortunately with her sedation finally wearing off she’s in a lot of pain, which is spiking her blood pressure.We’ve talked to the team and gone through a lot of different options but it seems…

    Read more: Popsicles and pain

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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