zaterdag 30 april 2011

No place like home...

It was a nice idea: Spending four nights in a vacation home near Cologne. We left on wednesday, after hesitating and discussing if we should leave at all. Why? Kalle didn't feel like waking up that morning. You might think 'great, so he slept really well!'. But he needs his medication early in the morning. So we tried to wake him up for an hour or even an hour and a half....nothing. We tried cold wet facecloths, we tried tickling, we tried rubbing his arms and legs, shouting at him....nothing. Just before I became really hysterical he slowly started to open his eyes. He drank a bit and fell asleep again. Then he woke up, drank a bit and fell asleep again.
After calling Kalle's neurologist we decided to start our vacation, in spite of Kalle's weird behaviour. The doctor said that Kalle might just be recovering from his cold. And, he said, if there was something serious going on Kalle probably wouldn't be awake and drinking between his naps. It felt wrong to drive to Germany with a child that wasn't okay. But staying at home didn't feel like the best option either.
Uncle Matti
The vacation home was okay, not amazing, but okay. It just wasn't our home, not our stuff, our couch, our pillows, our porch. If something serious would happen the next big hospital would be a 30-40 minute drive away.

The next day Kalle had many, many seizures. It was good to see him more awake (I was afraid he wouldn't wake up in the morning at all...). But his epilepsy was bad, really bad. He cried a lot, didn't feel comfortable at all. We figured that this is not a vacation and that we should go home. So that's what we did. On friday - after having lunch with my brother ('uncle Matti') - we drove back to Rotterdam.

It feels good to be back home. But Kalle's epilepsy is still bad. It's almost like there's something epileptic going on all the time. Clonic seizures, weird eye movements etc.... there's almost no comfortable moment. Instead there's a lot of heart breaking crying. Something we noticed every day now during the last couple of weeks. At least once a day, sometimes 3 or four times a day for 30 minutes up to two hours.
I can't describe what it's like to see your child uncomfortable almost all the time. What it feels like if you realize that love ain't enough and that there's probably no cure for this. Doctors aren't magicians.

The EEG on monday probably comes at the right time. Kalle is not okay. His EEG will be far from okay, no doubt about that (no, this has nothing to do with pessimism). We're curious about the epileptologist's opinion. What possible treatment will he recommend? A new drug? I'm afraid of what will come. Either way.

1 opmerking:

  1. Lieverds, wat is het allemaal heftig voor jullie alle drie. Heel veel succes gewenst morgen.