Updates
The most current updates on Katja are below.
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read more: Home Sweet Home
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!…
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read more: Survival Mode
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 go. My clothes are loose, my hair is shedding and I’m taking Motrin daily for pain. I’m surviving to give 110% of me to my…
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read more: She’S Back
Back to HKU (Step Down). Let’s hope round 2 is uneventful so we can leave soon!
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read more: Realities
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 days to post this because there isn’t much to answer. This is the reality of doing something only 40ish kids in the world have…
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read more: Heart Block
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…
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read more: Headaches & 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 hospital for the last 4 days, enjoying the sights, the gardens and meeting new heart friends. Her appetite is returning to…
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read more: Can’t Keep Her Down
In usual Katja style, she isn’t going to let a bad afternoon keep her down. By late this afternoon she was feeling so much better, she asked to go see the Gardens. ❤️
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read more: The Curse Of Day 3
If you’ve followed Katja’s journey in the past, you’ll remember the curse of Day 3. If not you can read about it in her blog updates under “Giving up is not an option”. For some reason after every ohs on Day 3 we hit a pain wall and have a set back. I try so…
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read more: Goal Smasher
Katja didn’t spend yesterday progressing… She spent it leaping past her goals 😳 Within 2hrs of her mask being reduced to nasal cannula, Katja got up. OT came in to see how she was doing and she decided she’d had enough laying flat watching Moana 2. She made the 6 steps over to a chair…
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read more: A Feisty Warrior
It’s been a long night. I haven’t slept more than 3hrs in the last 3 days. Katja had a bumpy night. Her body is still having a hard time purging the additional CO2 from Bypass. Her blood gases have been really high all night. With all her rejection meds, steroids and epi her glucose was…
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read more: The Long Night
We have a long night ahead of us… But she’s already breaking through sedation and complaining about her mask squishing her nose. She is already extubated, pace wires are in but so far not needed. Some of her blood work is a little high and we’ll spend the evening getting that in order but she’s…
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read more: untitled post 1151Update: Closing her took slightly longer than expected but she is finally in recovery. We should be allowed back soon to see her. Everything looks really good. Both her surgeons are very happy with the results. I wish I could say “the hard part is over” but the next 48hrs are critical for her. Her…
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read more: She’s done!
Katja is off Bypass and her heart is doing great! Everything looks perfect. She’s being closed up and sent to recovery soon. 💜
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read more: Phase 2
Katja has now been placed on Bypass. Her body is being supported by the machine. Over the next few hours, her surgeons will disconnect her Aortic root and pulmonary artery. They will replace them with the living donor tissue. The most critical stage will follow after, getting her off Bypass and allowing the heart to…
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read more: The Wait Begins
There was a bit of a delay this morning as another heart warrior received a full heart transplant. Katja is now back and prep for surgery has begun. Now we wait …. ❤️❤️❤️
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read more: We Got a Heart!
The Heart is Good!! ❤️🧡💛💚🩵💜 Katja will be heading back for her Partial Heart Transplant in 30 mins. Please pray for her. It will be a really long day. I will update here, her GFM and her blog as I get updates from the OR. They will be limited and pretty spaced out. Surgery will…
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read more: Update
Update: Heart has arrived. Everything so far is looking really good. They need to double check blood typing, antibodies and a few other things. They were hoping to get that completed by this evening for a midnight surgery but unfortunately the lab is taking longer than anticipated. Surgery was moved to tomorrow morning with a…
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read more: Roller Coaster
Here we go again… Welcome to our Roller Coaster! Call just came in. Potential heart and to prepare for surgery at Midnight tonight. We should know around dinner (though she can’t eat) if it’s good for transplant. Please pray for Katja that this is the one! ❤️
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read more: The Ugly Side of CHD
I know updates have been spaced and limited in information. I wish I could say it’s because we are happily enjoying our time on the East Coast or it’s because we are spending quality time with the kids. It’s not and the reality of it all is pretty depressing. However, I had a realization the…
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read more: Losing Faith
Update: Heart arrived and it wasn’t good enough for transplant. Katja’s surgery was cancelled and we are back to waiting 😔
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read more: Pins N Needles
Received a call this morning to be “on alert” as a “potential” heart has been found. It’s in bound. The team needs to ensure it’s “good for transplant” if it is, surgery would be tomorrow or Friday. Pray extra hard, that this is it and not a false alarm. This poor kid can’t go through…
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read more: When Stars Align
To say the last 3 weeks have been absolutely insane would be an understatement. We arrived in North Carolina to be greeted by Tropical Storm Chantel and multiple days of thunderstorms after. With all the flooding in the area and hotel issues, we were forced to move hotels, not once but twice in the span…
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read more: Tick Tick
It’s been a long week. Shortly after we arrived Katja crashed and went to bed early. The next morning she was completely exhausted. Very tired and crabby. We were prepared for her having some jet lag but this was much worse. Over the next week her appetite disappeared (she’s on medication to stimulate it), she…
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read more: Up Up and Away
Writing this from inside a plane that up until 48hrs ago I never thought we’d achieve, is a bit surreal. I think we as a family are still very much processing everything that just happened. From feeling hopeless just a few days ago, discussing emergency back up plans that we knew had significant risks to…
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read more: To You Amazing People
*****UPDATE***** Katja’s flight to North Carolina has been fully funded! With the help of all of you amazing donors! We’ll be flying out on Friday to await her partial heart transplant at a hotel by Duke Children’s hospital. We are still working on her return flight when she will be post surgery on full immunosuppressants…
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read more: Thank You
We are beyond grateful for all the people that reached out to us and the media to make this happen. Thank you all so so much! Kiro 7 King 5 (click to watch) https://www.king5.com/embeds/video/responsive/281-fc70c02e-2332-47b6-b696-7ba27a8c0679/iframe
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read more: Katja Needs Your Help!
The waiting is the hardest part, honestly it is. Katja got to watch her big sister Nevaeh graduate (thanks to the kindness of the Angel of the Winds arena). We were able to breeze her in a separate exit, avoid all the crowds and take her right to an isolated box suite. She was able…
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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
Help us help Katja!
Confessions of a Mended Heart 