Tag: surgery
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The Ugly Side of CHD
Read more: The Ugly Side of CHDI 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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Pins N Needles
Read more: Pins N NeedlesReceived 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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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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Thank You
Read more: Thank YouWe 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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A Partial Gift With Significant Risks-PHT
Read more: A Partial Gift With Significant Risks-PHTThat big “T” word that makes everyone’s heart flutter just a bit. It’s scary, it’s unknown but when it’s spoken out loud, you just know, something is wrong. Transplant. There I said it. Did your heart skip a beat? Mine does, every time and I’ve been saying it a lot lately. So let’s talk about…
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Can you Cure a broken heart?
Read more: Can you Cure a broken heart?I don’t know but I’m willing to find out……. Katja was doing great. She had made the transition from wheelchair to walker and was slowly building her endurance back up. Her Chorea was still progressing but at a slower rate. We decided to have a talk with her Neurology team at Boston and finally caved…
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(W)Hole Heartedness
Read more: (W)Hole HeartednessKatja’s recovery has been slow and smooth. Which is just the way we want it 😉 Her stamina is improving weekly. The first days after surgery included multiple naps, then getting to lunch was difficult. Now she can make it to about 6pm before she’s ready for bed. The amazing thing about the human body…
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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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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…
Confessions of a Mended Heart 