Katja's Journey to -W-hole Heartedness

01/09/2026

Katja's home.... though with some new equipment to help her while healing. ❤️

01/05/2026

Katja has been battling pneumonia for the last month and unfortunately was admitted to Children's over the weekend.

She is still inpatient. She had a nice improvement on steroids but once they were stopped she was back to the low 90s for sp02. She has the full department floor treating her (Cardiology, Transplant, Pulmonology, Infections Disease, Immunology and Respiratory). So she's in good hands.

She needs to maintain her oxygen over 94% on room air for 24hrs to come home. We aren't sure when that will be. Her teams have been changing meds, moving management strategies and throwing everything at this pneumonia. Our best guess is inflammation is the culprit and not bacteria, as she has received treatment for all organisms we can think of.

Hopefully she turns the corner soon and is able to come home.

10/30/2025

Katja Update:

Thank you all for the continued love and support. It's been a crazy few months since we arrived home.

Katja has had to see her full round of Specialists, including Neurology, Pulmonology and Cardiology. The Seattle Transplant team has done a fantastic job setting up protocols to keep Katja healthy and safe.

However it's a lot. She has regular blood draws every 5-7 days and Dr appts almost weekly. Her Donor Specific Antibodies (DSA) have finally decided to show themselves (and rapidly), so her team has been increasing immunosuppressant therapy to keep them at bay.

She's had some very minor changes in her echo but remains stable. Her heart looks beautiful and her LV is back to normal size.

I'm so sorry this update took awhile to come. With Katja requiring so much care and 4 other children at home, we've been going a little crazy keeping up with things.

We'll see how the coming months look with her DSA's and how she feels but right now she's doing really well.

She of course can't wait for cold/flu season to end do things but she's so grateful for how much better she feels.

It was all thanks to the generosity of this community. We will forever be grateful to all of you ❤️

09/19/2025

If Katja could ask for one thing after everything she's been through, it would be:

"Be an organ donor. Save more lives like mine."

A huge thank you to you all for joining us on this journey and a big thank you to the King 5 team on helping get her story out to all of you ❤️

https://www.king5.com/article/news/local/9-year-old-girl-rare-heart-transplant-community-support/281-d52ae933-f8fc-4dfc-92cb-e96e35215e41

09/07/2025

On our way home! ✈️

09/06/2025

It's official! We are finally heading home after 10w2d, that's 2.5 months of being on the East Coast 😱

We are beyond grateful for all the love and support. Katja received a special private flight home 🚀

We'll see you tomorrow afternoon Seattle with the PNW and Childrens National's 1st Domino Partial Heart Transplant kid! 😉

08/30/2025

Blog Update:
"I know all of you have followed Katja’s story for awhile. We appreciate the love, support and help from everyone. The outpouring has been amazing. I wish I could express in words how grateful we are for the community you all have built for Katja. It’s beyond heart warming.

But we are exhausted. We’ve checked out of our hotel in busy DC to retreat to a quieter area. Where Katja can look out her window and see ducks in a pond instead of buildings and ambulances. We are taking this next week to live and repair. To focus on her healing so she is strong enough to fly home.

We don’t expect to update unless something serious happens. We are just going to be. Enjoy non-hospital food, watch movies, sleep in and attempt to heal the physical and emotional scars these months have caused.

We are unplugging to recharge. We’ll have updates again soon."

You can read the full update here:

We have been surviving these last few months. No thriving, no coasting, no getting by… surviving. We barely eat, we definitely haven’t been sleeping and we’ve let our own health g…

08/26/2025

And we're Freeeeeee!

08/24/2025

Back to HKU (Step Down). Let's hope round 2 is uneventful so we can leave soon!

08/23/2025

The Realities of CHD...

I’ve been getting a lot of messages asking how Katja is doing, what went wrong and general curiosity. We appreciate everyone’s concerns for her. I wish we had answers. I’ve waited…

08/21/2025

Katja was given discharge instructions for tomorrow and then her heart decided otherwise...

Late this afternoon she started having irregular beats that progressed to full 3 second skips. She developed Heart Block shortly after. She was urgently moved back to the CICU. Discussions about operating to put her pace wires back in, urgent echos and medication were had.

Isoproterenol was started and her heart rate shot to the 180s. The Heart Block stopped but her HR has remained in the 150s do to the medication. She'll be stuck in the CICU until they figure out what is causing these and can wean her off medication. That will be a few days at least.

Keep praying for her. I wish we had better news.

08/19/2025

That is all that is keeping us here. Headaches and steroids....

That is all that is keeping us here. Headaches and steroids. Katja is doing amazing from a heart standpoint. Her function looks great and she has so much energy. She’s been walking around the…