Tag: Boston Childrens
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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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Popsicles and pain
Read more: Popsicles and painIt was a long night for Katja. She was pulled off a majority of her meds and started on oral medication. Unfortunately with her sedation finally wearing off she’s in a lot of pain, which is spiking her blood pressure.We’ve talked to the team and gone through a lot of different options but it seems…
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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…
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the Beat goes on
Read more: the Beat goes onKatja is off Bypass! We are waiting on the update from her surgeon now. Hopefully she’ll be closed up and in recovery in the next 2hrs. I’ll update as soon as her Dr talks to us.
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No News is good
Read more: No News is goodAs they say.. “No news is good news”. Latest update from the OR is that everything is going as expected. Getting into her chest took longer and her repair is taking a little longer than we wanted but things so far, are moving along. She’s still on Bypass but so far, so good 🤞
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The Great Pause
Read more: The Great PauseKatja is now on Bypass. It took longer than expected due to her previous surgery scar tissue and adhesions. These next few hours are the most crucial. Her heart is stopped completely while the machine keeps her alive. Her heart will be repaired and the team will slowly restart her heart and get it beating…
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first Incision
Read more: first IncisionWe have 1st incision. About 1.5-2hrs until she’s fully on Bypass and repair can begin.
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She’s started
Read more: She’s startedShe’s been pre-medicated and now back for surgery. Next update at first incision (about an hour or so).
Confessions of a Mended Heart 