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

  • Can you Cure a broken heart?

    Can you Cure a broken heart?

    I don’t know but I’m willing to find out……. Katja was doing great. She had made the transition from wheelchair to walker and was slowly building her endurance back up. Her Chorea was still progressing but at a slower rate. We decided to have a talk with her Neurology team at Boston and finally caved…

    Read more: Can you Cure a broken heart?
  • That walker is made for walking

    That walker is made for walking

    It’s been awhile. I’d say there is so much to catch up on but honestly, it’s just been 9 months of tough work. Katja has spent the last 12 months in a wheelchair. Both for her lack of function and safety. She’s received therapy (PT, OT and Aquatic) 4-5 days a week for the last…

    Read more: That walker is made for walking
  • De Novo: How New?

    De Novo: How New?

    I’ve been trying for a few weeks now to find the words to write this. Let me first start by saying that Katja’s doing well. We’ve gone up on her dopamine to a point where she was starting to get side effects. Specifically weight loss, nausea and occasional vomiting. So we decided to pause on…

    Read more: De Novo: How New?

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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