Tag: Heart Defect
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Failure Isn’t An Option
Read more: Failure Isn’t An OptionAs 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.…
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Unstoppable Heart
Read more: Unstoppable HeartAs always, Katja is unstoppable 🤗She’s being discharged early. She was up within 2hrs of surgery walking around the unit yesterday. She’s eating great , pain is minimal and she’s in good spirits. So she gets to come home today. She is such a Warrior 💪🏻
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She’s Out
Read more: She’s OutShe’s out and looking good! Pacemaker is in and doing it’s job.
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The Heart Of A Warrior
Read more: The Heart Of A WarriorYesterday morning Katja’s Dad found her convulsing on the stairs. She was rushed to SCH. She had multiple episodes while in the ER which was determined to be an AV block. Katja entered complete heart block for 14 seconds last night. She was immediately started on isoproterenol with full cardiac watch overnight. Her teams made…
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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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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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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. ❤️
