Thursday, September 27, 2012

You know it's a tough night when your text messages look like this...

Chris is at a surprise party for a very good friend of ours. We almost never leave each other alone, caring for Oliver is a two person job, but I insisted he could go and I'd be fine. And I was.

We've become very good under pressure and remaining calm in challenging situations. That's hard to do when your child is having a seizure and you're trying to put small amounts of medicine into a tiny port into his belly. Deep breaths and stay calm, Oliver needs us to stay calm. If we start freaking out not only will he not get the care and medicines he needs, but he picks up on emotions, and losing it in front if him will probably make him even more confused and frightened.

Oliver has now calmed down and snoring in my arms. :)

Unfortunately we've watched Oliver have several seizures over the past few days. We are starting to recognize the signs that one is coming. It usually starts with some arm tightness and then unprovoked crying or fussiness, followed by an unearthly scream unlike anything else you've ever heard. After this his entire body, neck and head will arch backwards and he's screaming at the top of lungs, his eyes are rolled into the back of his head and his legs and arms start twitching. They are terrifying to witness and we give him diazepam (valium) right away to try and stop the cycle. His antiseizure medicine has also been increased to try to prevent them from happening in the first place. Yesterday we watched him have four of them in a row. He had barely caught his breath from one and it would start again. It was awful. Finally they stopped and a 3 hour nap followed. He catnapped throughout today too, they really wear him out. I hope we can get them under control soon.

ok, I am going to try to move him from the rocker to the bed. We'll see how this goes.

-posted using Blogpress on my iPhone

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