Complication. It’s a word no parent ever wants to hear after surgery. Katja came home after surgery as a ball full of energy. We assumed it was because her heart was finally functioning correctly and she was feeling good. We were so so so wrong.

As the weeks after surgery went on, so did we. We knew her heart was looking great and we had at least a few years before another surgery. We planned so many vacations! She even went back to the Netherlands to celebrate her birthday. However we started to notice Katja tripping, falling and running into walls. The best way to explain her behavior was “It’s like living with a tiny alcoholic, she’s always loopy”. As the weeks passed, it got worse. Then she tripped at daycare and slammed her eye into a table. We took her to the ER. She was kept for 2 days doing tests and MRI’s. Neurology was called in. No one could explain what was wrong with Katja. Then the tremors started, her hands would shake so bad she couldn’t feed herself. They sent us to a Neurologist that specializes in movement disorders. She spent an hour with Katja and said this is “Post Pump Chorea”.

PPC is a movement disorder. The name is given because of the bypass machine and the dance-like movements of chorea.  Another phrase for having had a cardiopulmonary bypass is being “on the pump.” And the term “chorea” is Greek for “dance-like”. Katja was anything but “dancing”. Again think 3 year old alcoholic. It’s rare, more rare than her heart condition! How could this happen? How could our poor warrior who has gone through so much now have this too!

How bypass works is by hyper cooling the body to protect the brain while on the machine. Sometimes temps get too low and this can cause PPC. Katja had a few temp readings during surgery that registered as borderline low. This is the best answer the hospital could give us. So now we have to learn to live with PPC. As her Neurologist explained “ A third of kids will get better with time, a third will remain the same over their life and a third will get progressively worse”. Okay well thanks, that sucks! 

After 3 years of medications, intense therapy and pushing for answers, Katja started to get better. The tremors stopped, and though she still trips on thin air occasionally, she can function normally. Well that was until 6 months later when the ADHD diagnosis came in.