Updates
The most current updates on Katja are below.
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read more: The Calm In Our Storm
A question I get asked often is “How are you so calm about Katja?” The answer is, well, complicated. To understand why we take all of this in stride, you first have to understand Katja’s journey. We found out at 19 weeks pregnant that Katja’s heart was not “normal”. We had months to learn, prepare…
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read more: A Partial Gift With Significant Risks-PHT
That 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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read more: Save Katja’s Heart: Urgent Flight for a Rare Transplant
Help Katja! Spread the word! https://gofund.me/33c1e6e5
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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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read more: That walker is made for walking
It’s been awhile. I’d say there is so much to catch up on but honestly, it’s just been 9 months of tough work. Katja has spent the last 12 months in a wheelchair. Both for her lack of function and safety. She’s received therapy (PT, OT and Aquatic) 4-5 days a week for the last…
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read more: De Novo: How New?
I’ve been trying for a few weeks now to find the words to write this. Let me first start by saying that Katja’s doing well. We’ve gone up on her dopamine to a point where she was starting to get side effects. Specifically weight loss, nausea and occasional vomiting. So we decided to pause on…
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read more: Stranger Things Have Happened
I know I’ve been a bit silent the last 2 weeks. I wish this was due to a much needed recovery from being impatient but unfortunately not. It’s been a super busy few weeks for us. Lots of follow up Dr appts, therapy consults, permanent wheelchair sizing and trying to navigate life with our new…
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read more: Rainbow Power
The Princess on wheels has been a little down about her new chair. She said it was “dark and sad looking”. A few hours later, some tape, accessories and a aching back… And we have a very colorful Rainbow Powered Ride 😉 She is super happy about it. These days I’ll do anything to get…
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read more: New Reality
Katja’s home!! 🤗🤗🤗 It’s been a long week. I know many of you are just as heart broken, frustrated and upset as we are for Katja. I wish I could give all of you answers but we still don’t have any ourselves. Everything being negative, though not helpful in pinpointing cause, is an answer. It…
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read more: Concessions
Short Version: Yes, we are still inpatient. No, we still don’t have answers. I figured we’d get that out of the way 😉 The long version: Katja’s MRI/MRA were negative for any significant findings or changes. Her EEG was normal. Her swallow study was also good. PT/OT have been stopping in daily to find ways…
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read more: Helplessly Hopeful
Helplessness 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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read more: Hopeful for a New Year
My absolute hope for 2024 is answers. Why does this keep happening? Why isn’t she responding to meds appropriately? Why is she getting worse instead of better? Why after everything, her? We as a family are heading into this New Year with hope. Hope for answers and hope for Katja. While I don’t have any…
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read more: Answers come to those who wait
And wait we have. Over 5 years to be exact and while we didn’t necessarily learn anything new, we have new perspective on what we do know. Let me back track slightly to last night. Katja’s labs, X-ray and testing were all negative. She did test positive for Rhinovirus (common cold). Add to that a…
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read more: Can We Get A Break?
I wish I could say that our Redeye to Boston was uneventful but what would my complex warrior be, if not even more complex? Katja decided mid-flight to start coughing like crazy and send her O2 into the 80s. Lots of Albuterol, steroids and scaring the living daylights out of Mom and we were able…
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read more: Boston Round 2
We officially have dates for our 2nd trip to Boston. Katja and I will be flying out via a redeye Dec 3rd and returning Dec 7th (if additional testing isn’t required). Her appointments with Neurology and Cardiology are Dec 5th. Cardiology just wanted a check in since we’ll be there anyway. So far we’ve tried…
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read more: Stages of Grief with a complex child
It’s taken me a long time to write this. I wish I could have found the words sooner but the many stages of grief have been difficult. I’ve been in denial. Hoping that what I’ve been seeing was just my imagination. If we pretended everything was okay, then it would be… Right? Guilt for not…
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read more: (W)Hole Heartedness
Katja’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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read more: hospital adventures
Katja 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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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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read more: Todays going to be a fantastic day
Sassy 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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read more: baby Steps
Baby 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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read more: givIng up is not an option
Today 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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read more: Popsicles and pain
It 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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read more: determination is her strong suit
To 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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read more: And now our watch begins
We have a very long night ahead but she’s stable and doing really well.
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read more: home Is where the heart is but our hearts are with her
Katja 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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read more: the Beat goes on
Katja 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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read more: No News is good
As 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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read more: The Great Pause
Katja 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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read more: first Incision
We have 1st incision. About 1.5-2hrs until she’s fully on Bypass and repair can begin.
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About Us
We are a fun loving family of 7. I’m Jenn, the Mom and words behind the blog. Dad Jori is the IT backbone of making sure I don’t go crazy over features. We have 5 beautiful children. Nevaeh (17), Twins Arianna & Araceli (15), Katja “Our Mended little Heart” (9) and Gryffin “Finn” (4).
Save Katja’s Heart: Urgent Flight for a Rare Transplant
Help us help Katja!
Confessions of a Mended Heart 