Tag: Truncus
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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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Time Starts
Read more: Time StartsShe’s back. Surgery should take about 2.5hrs. She should be out around 11am.
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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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pneumonia, Blood Counts and Hospitals
Read more: pneumonia, Blood Counts and HospitalsIt’s been a really rough few months for Katja. She started with a minor cold in late Nov that progressed to pneumonia within 2 weeks. Since then, she’s had multiple antibiotics, steroids and medication changes including significantly reducing her immunosuppressants. However, her pneumonia continues to return. This is what lead to her being hospitalized last…
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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!
