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 pushing harder sooner. Anger for the lack of help from our medical teams. Anger at the Universe, that after all Katja has been through, we have to do this AGAIN.

Depression has been the hardest. Feeling so alone in having a complex child that has become even more complex. Mourning the losses she is suffering and the dark mood that has overtaken my usually very happy and spunky child.

Acceptance took me awhile, for that I am sorry. Her story has become close to many of you and I’ve gone silent. I gave you false hope that “no news is good news”. For that, I apologize.

So let me explain…

As you know, after Katja’s 2nd ohs she developed a rare life changing neurological condition called “Post Pump Chorea” (PPC). I have an entire post dedicated to discussing it if you’d like to know more you can find it in the “Mending a Heart” section.

Boston was extremely careful with Katja. Profusion knew she had PPC and they took great lengths to watch her temps during surgery. We knew another surgery could trigger it again. The team was warned and we prepared or so we thought.

Neurology came to see Katja inpatient in Boston at 4 days post surgery. We noticed slight tremors in her hands while eating and some swaying when she walked. They consulted the movement specialist and encouraged us to watch her. They requested we follow up with her Neurologist in Seattle as soon as possible.

Her symptoms were mild and Katja was known to have breakthrough symptoms when sick. So we assumed the surgery just tired her out and because of that the PPC was showing slightly.

Seattle Neurology couldn’t see her until mid September. So we watched and waited. Things remained mild through the summer. At her appt her symptoms were still pretty mild-moderate and only showing when Katja was off her ADHD meds (they help cover up the PPC).

We agreed to do a repeat MRI to make sure nothing in her brain had changed and to start meds in a hope of getting ahead of things.

It was all hopelessly to late. I wish I had pushed harder for an appt in early Aug. By the time her meds were approved by insurance and she started them, her Chorea came slamming in, out of the blue.

She woke up one day and just couldn’t walk, couldn’t control her body anymore, couldn’t sleep because her muscles wouldn’t stop twitching constantly.

Then the drunk walking, slamming into things, injuries, uncontrollable tongue movements, drooling, slurred speech and aggravation that her body no longer behaved as it should.

This all happened in the course of 2 weeks. Katja slowly became aggravated, angry and depressed that her body is “misbehaving”. She’s emotional and angry.

That was a month ago. We’ve gone through 3 medications and exhausted all previous options. Neurology has brought up possible sedation which we won’t agree too.

She’s fallen behind in school, can barely do her work, can’t focus and has become a bit of a danger to herself (she’s constantly falling).

Of course during all of this, I’ve been working hard to get her the help she needs. I reached out to Boston, to the movement clinic, in a hope that they can help.

They’ve offered to see her. To see what they can do to treat her. I really hope we aren’t to late. Her symptoms have progressed faster and farther than the first time. Boston is our last ditch effort to get answers. To help Katja fight this.

So we (Katja and I) will be Boston bound shortly (within the next 2-4 weeks). We have a date of Nov 21st but we are hoping to move that up or back to avoid her missing Thanksgiving at home.

I can’t tell you how frustrating and unfair life for Katja is. But she is a fighter. It took her 3 years to overcome this last time and I know she can do it again. I just pray we get answers in Boston because my heart is breaking for her right now. 💔