Tag: Truncus
-

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.
-

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.
-

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 🤞
-

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…
-

first Incision
Read more: first IncisionWe have 1st incision. About 1.5-2hrs until she’s fully on Bypass and repair can begin.
-

Surgery Day choices
Read more: Surgery Day choicesTo say “it’s been a day” would be an understatement. There are so many times when this little girls bravery amazes me but each time it still takes me by surprise. Today was long. Very very long. As adults, we struggled with the schedule. There were lots of shed tears, frustrations, cries to return home…
-

Getting Settled
Read more: Getting SettledWe arrived safe and sound yesterday. It was definitely a whirlwind of a day. Patient housing is situated right by Fenway park. Which means we have lots of food options to try out 😉 Katja picked Woodfire pizza for dinner and some delicious noodles for this evening. We did some grocery shopping and found a…
-

The last minute shuffle
Read more: The last minute shuffleWith all the chaos going on before we leave (I’m looking at you refrigerator that decided to break down yesterday 😑) what’s a little last minute date shuffle? Received the call this morning that the surgery date has been moved from Friday (June 23rd) to Thursday (22nd). Looks like we won’t make Legoland before surgery…
-

What’s life without a little chaos
Read more: What’s life without a little chaosIt’s the 10 day count down! Things here have been super busy. Lots of end of school year activities, last minute appointments and getting everyone ready for us leaving. We’ve been trying our hardest to keep Katja’s day to day as normal as possible but with the heat and her heart, she’s been pretty tired/crabby.…





