Tag: hospital
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Tick Tick
Read more: Tick TickIt’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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Helplessly Hopeful
Read more: Helplessly HopefulHelplessness is never a good feeling. When it’s yourself it can feel terrifying but when it’s your child, it’s maddening. Katja’s Chorea continues to worsen. 3 months ago she was a fully functioning independent 8 year old that was recovering from her 3rd open heart surgery. Now, she’s a fully dependent child that can not…
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hospital adventures
Read more: hospital adventuresKatja is doing extremely well the last 2 days. She’s been asking to leave her room, visit other areas of the hospital and play in the activity room. She saw both rooftop gardens, both indoor gardens and the WishingStone terrace. We’ve been playing lots of games in the activity center and fingers 🤞 we get…
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Anniversary 0f OHS #2
Read more: Anniversary 0f OHS #2❤️Our 3x OHS survivor❤️07/28/2015~06/26/2018~06/21/2023 👏👏👏👏 Happy Heart-iversary!
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Todays going to be a fantastic day
Read more: Todays going to be a fantastic daySassy pants is back! Katja had a really good night. She’s off her narcotics now and down to IV Tylenol/Toradol. She is finally starting to drink and will hopefully eat some breakfast. Her poor digestive system is finally starting to wake up and cause some minor discomfort but she is still much better today. Chest…
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baby Steps
Read more: baby StepsBaby steps… Last night Katja had her first “bath” in a chair. We called it her “Spa Night”. She even had a hair washing shower cap. She definitely perked up after getting clean and walking a little. Today has been much better. Eating/Drinking have been limited. She’s on such high levels of narcotics that she’s…
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givIng up is not an option
Read more: givIng up is not an optionToday was a step back. Today was hard. Today was exhausting. Today will hopefully be tomorrow’s memory. Katja has been in severe pain since 6am. Even with a lot of Dilaudid on board. Around 10am, I did what I do best…. I went into Mama Bear mode 😡 By 10:25am the entire unit was outside…
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determination is her strong suit
Read more: determination is her strong suitTo say “this kid is a RockStar” would be an understatement. I am in awe of her. She is a warrior. When she decides something, nothing will stop her. Absolutely nothing. She has been breaking through sedation since a few hours out of surgery. Giving us all her fiesty sass and her famous raised eyebrows.…
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And now our watch begins
Read more: And now our watch beginsWe have a very long night ahead but she’s stable and doing really well.
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home Is where the heart is but our hearts are with her
Read more: home Is where the heart is but our hearts are with herKatja had a lot of calcification in her Ozaki, along with some issues that were not addressed in her previous surgeries (one of her pulmonary branch arteries has been blocked since birth apparently). Dr Baird had to remove everything and start over for both her aortic and pulmonary repairs, thus the extended time today. When…
Confessions of a Mended Heart 