Tuesday, 27 September 2011

Houston, We Have a Problem

When people see Nicholas' belly for the first time, they are usually slightly alarmed. That's because there is a large, circular protrusion of the skin just above his waist on the left side. Nick and I always deadpan that he has an extra hockey puck handy any time if anyone wants to play shinny.

The circular object under Nick's skin is a computer. It's a complicated drug delivery system that drips powerful medication into the spinal cord. The titanium pump is controlled by an external computer (the doctor actually places the computer mouse on Nick's stomach at refill times) and a catheter under the skin connects the device to the spinal cord. A mixture of three medications runs in the pump - a muscle relaxant, a pain killer and a spinal anaesthetic.

Of course, before returning to Ottawa, getting the pump refilled was in my top five priority problems to solve before I could smile about the move. In fact, to my surprise, it was easy. We located a physician and a pharmacy who all seemed to take Nick's pump in their stride. They all agreed to help and I was thrilled.

Fast forward to last week. For our first refill appointment this side of the Atlantic, we had a rather large entourage. We were all shepherded into the office and the doctor finally entered and introduced herself. The first thing she said was, "I'm sorry, I cannot refill your pump today. The pharmacy sent the wrong medication in unmarked vials. It's a good thing that I didn't inject it. We need to find a new pharmacy that can fill this prescription. It's very complicated." She went on say that another of her patients has a similar mixture and that because he moved from Edmonton, he continues to source his prescription from that city. Perhaps we could use the same one. It seemed strange to me that we would have to go across our huge country to get this drug, but I have seen Nicholas in withdrawal before and I would rather die than see it again.

Yesterday morning, the doctor called and said that we were going with Edmonton. "OK", I said. In the afternoon, I saw the light flashing on my phone with a voicemail message. I dialled to listen and heard a pharmacist from Edmonton tell me that he couldn't fill this prescription until at least October 17 - a full week after the pump runs out and begins to beep inside Nick's body. They would not fill the script without first testing for stability of the drug mixture and that takes two weeks. By the 17th, Nicholas would be in severe withdrawal, full of uncontrollable spasm and pain.

So. Clearly, Edmonton is out of the question. I have left urgent messages at all the offices of everyone concerned. I have emailed as well. Now I wait. Perhaps I should be writing the speech that I am meant to deliver at the AGM of a parent group in Ottawa tonight. But I'm too distracted.

Houston, we have a problem.
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