To say the last 3 weeks have been absolutely insane would be an understatement.

We arrived in North Carolina to be greeted by Tropical Storm Chantel and multiple days of thunderstorms after. With all the flooding in the area and hotel issues, we were forced to move hotels, not once but twice in the span of a week.

We had unpacked at the first hotel, as we expected a long stay. So we had to pack everything up and move. Hotel #2 we only stayed for 3 days before ending up at #3 which we’ve been at for about 5 days now. It’s a lot packing up 4 people when you have a months worth of stuff with you. Getting 2 autistic kids to settle in with so much change has been a nightmare.

However, we are safe and sound!

On top of all the moving I’ve been diligently working with Katja’s medical teams across 4 hospital systems. Yes that is right, I said FOUR.

I think the Stars have finally aligned for us. Just in time too! Katja has become significantly worse this last week. She’s spending her days in bed and napping a lot. She was in the hospital on July 4th with chest pain and difficulty breathing. Since then she is still experiencing significant chest pain/tightness.

Unfortunately there is nothing her team can do. Her blood pressure is already extremely low. We can’t add medication on or diuretics to help with the swelling because she’d have to be hospitalized for monitoring and we don’t want to do that to her.

Our time is officially out.

I called Boston and scheduled an emergency repair of her aortic valve. It’s a temporary fix to get her through but comes with significant risks, especially for her Chorea as it would disqualify her for a DBS device for her chorea symptoms. Boston was able to schedule us the first week of Aug. If she doesn’t get her partial heart transplant by then, this is her only option and it’s the one we’ve been avoiding her entire life…. A mechanical valve.

We had a long talk with Dr Turek at Duke this week. He agreed time is running out. Unfortunately all Katja’s matches for a domino transplant at Duke are status 2. Katja is #1 for her surgery. This makes her and the donors incompatible as they have time to wait and she doesn’t.

Dr Turek mentioned a similar situation with another patient and offered to speak with Dr d’Udekem at Children’s National in Washington DC (a 4hr drive away).

I’ve spent this week in a whirlwind of calls, emails and zooms. I had to make sure DC had a movement specialists our Neuro teams could work with. Turns out both our Boston and Seattle teams know the Neurologist at DC. That made coordination of care super easy.

All 3 transplant Dr’s know each other (Duke, Boston and DC) so that also helped as we have been working with Dr Emani at Boston to get Katja officially listed with their PHT team but that is slow going as it’s still a research study requiring a lot of hoops to jump through and she doesn’t have that kind of time.

Dr d’Udekem (who happens to be from Belgium, much to the delight of Jori, though the French side and not the Dutch side but he does speak Flemish Dutch 😆) agreed to take Katja’s case. We spoke with him late last night and he wants us to drive up Tuesday (which is Katja’s 10 Birthday) for some tests and to meet the team. He plans to list her right after.

The best part? When I asked him for wait times based on her blood type and status, he said DAYS. Not weeks or months. They can get her valves in DAYS.

Have the stars finally aligned? I don’t know but what I do know is her first surgery was at 6 days old on Nevaeh’s 8th birthday. Wouldn’t it be perfect that her LAST surgery is on Nevaeh’s 18th? I think Nev would agree, that would be the best present ever.

Welcome to the Roller Coaster that is our life ❤️