Tag: Truncus
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Home Sweet Home
Read more: Home Sweet HomeIt’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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Survival Mode
Read more: Survival ModeWe 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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Get Outta Here
Read more: Get Outta HereAnd we are finally FREE!
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She’S Back
Read more: She’S BackBack to HKU (Step Down). Let’s hope round 2 is uneventful so we can leave soon!
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Realities
Read more: RealitiesI’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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Heart Block
Read more: Heart BlockKatja 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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Headaches & Steroids
Read more: Headaches & SteroidsThat 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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Can’t Keep Her Down
Read more: Can’t Keep Her DownIn 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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The Curse Of Day 3
Read more: The Curse Of Day 3If 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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A Feisty Warrior
Read more: A Feisty WarriorIt’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…
Confessions of a Mended Heart 