A Lifeline

We have a solution. For now and I think for the future.

Time will tell how this plays out - but for now, we are grateful.

I am feeling battered and still vulnerable. My question is this: why is it so difficult for families to gather accurate information about funding for essential (and non-essential) services? The fact that we are left guessing at what might be acceptable makes solution based advocacy almost impossible.

But for now, thank goodness Nick will have his pump refill next week.

This afternoon, Jim and I will go to the cottage and the forecast is cold and rain. No worries - I will be sitting by the fire playing cribbage. That's one game I know I can win.

Uncle.

Uncle. Tap out. I don't want to play anymore. I give up.

This morning, the doctor called and said that she was leaving town at noon (returning next week) and had no more time to deal with our prescription situation. She had found someone in Moncton, New Brunswick, who could prepare Nick's pump drug mixture, but we had to pay $2,000.00 for it. This pharmacist in Moncton would call me in an hour and I would give him my credit card details.

By noon, I still hadn't heard from the Moncton, so I called them. The pharmacist in question had left on holiday till next week.

I called the pharmacy here in Ottawa, only to learn that Nick's medication uses a powder form of the drug that is not covered by the government funding plan for people with disabilities. I called said government funding plan offices today four times, leaving urgent messages and never heard back.

It's now 4:57am and Jim and I are both sleepless and nauseated by the prospect of being forced to consider paying tens of thousands of dollars (Nicholas requires refills of his pump every five weeks) for our sweet son to be free of pain.

So, we have decided that enough is enough. We are going to forget Moncton. We are going to call the pharmacist here in Ottawa and tell her to contact the UK hospital and get advice on how to achieve the best possible mixture, using drugs that are covered by the Ontario government funding plan. That is the only practical, sustainable solution. We hope it works.

Now, I am going to put on headphones and listen to the uncensored version of C. Lo Green's "Forget You" at a volume of "eleven", as Nigel Tuffnell would say.

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.

Snakes in the Water

The trouble with writing a blog is that I always think I need to 'sort things out' in order to formulate a clear message that is worth sharing. In the midst of what feels like chaos, what is clear - what is worth sharing? Well, I realized this morning that I had better ditch that precondition to writing.

In some ways, the situation is normal in our household. All the optics reflect stability, organization and calm. Our boxes are all unpacked and pictures are hung. Nicholas is loved and very well cared for in his new home.

But I was awake last night from 2-5am again and my dreams were of giant snakes in our lake water at the cottage. Why do I feel frightened and under threat? I think there are two reasons. One is that I had no idea how I would feel with my boy living apart from us. I know that everything we did was right for him and for us, but at a cellular level, my heart and soul are objecting. My sister Karen suggested that my feelings reminded her of when she stopped breast feeding. Such longing for closeness, yet the power of reason forcing separation. I think it's not a bad analogy, but the difference I feel is that I don't know if Nick is safe because I can't check on him in the next room.

Nick is doing quite well, but a few days ago, his bloodwork results came back with a toxic tegretol level. Tegretol is one of his medications that stops seizures. Nick's level was far too high and the strain on his liver showed in another very inflated marker. So, of course our wonderful-hero GP advised lowering the dose of tegretol. So far, we've had four nights of the lower dose, but on average, eight grand mal seizures each night. This morning a note from the doctor advises us to increase the medication back to the old dose. Aside from emailing me on a Sunday morning during his holidays, our 'hero of the community' as I call him, managed somehow to get an appointment with the best adult epilepsy specialist on November 1st (the waiting list is usually over a year). Tomorrow, I will call that doctor's office and beg for an earlier appointment.

Last night, Jim and I attended the annual National Arts Centre gala concert and dinner. Yesterday, I joined the board of the Canadian Centre for Disability Studies. This week I give the AGM keynote to an Ottawa parent group called Families Matter. Now, if only I could sleep. Does anyone know how to get rid of snakes?

LEARNING

Today I feel refreshed by the power of Nick's stillness. Yesterday I had the pleasure of his company all day and into the evening.  We read the papers, reminisced about London, joked about the characters in our family and most of all, set all agendas for purposeful action aside.  

What have I learned from Nicholas?  That I feel off-balance and unhappy when he is not "under my wing".  That I need to trust in him to direct his own care and to tell me if things go wrong.  That we need to trust in the universe that we will be alright in a new configuration. 

And Nick's lesson plans involve stillness, hope and trust.  He leads, not me.  With this lesson fresh in my mind, I feel much better today.  

CHANGE

I won't lie.   So far, this move has not been easy.  The night before we left London, we all noticed that Nicholas had symptoms of a urinary tract infection.  It was too late to call in a doctor, so we just carried on with our travel plans.  After affectionate (and a little tearful) hugs goodbye with our extended family of staff at Grosvenor Square, Nicholas left in a black cab with Alvaro, bound for Paddington station where he would take the Heathrow Express and meet us at the airport - a train ride that would save him the effort of sitting in an uncomfortable van for an hour.  When we met Nick at the airport, it was obvious that he was ill.  Nicholas was feverish and nauseated at the airport and the flight was less eventful, but uncomfortable.  He managed some smiles when at the Ottawa end when the warmest group greeted us - family, friends and Rotary Home staff all gathered to give us a hand with the luggage and a collective hug.  Christine, our primary nurse, was concerned.  Nicholas by now had a very high heart rate and real temperature.  We decided to try simple hydration and then reassess.  Luckily, our PLAN A worked and Nicholas was much improved after a few hours of water via the tube.

Thanks to a house call by our wonderful GP, we now have a prescription for amoxicillin and Nick seems much more himself.  But today he's sneezing, so a cold may be on its way.  His nights have been much better from a seizure perspective since we arrived.  I believe that may be due to his brand new alternating air mattress.   Nicholas seems very comfortable in bed and we know that pain is a seizure trigger, so this new state of affairs is a very welcome change.  Hopefully, his virtually seizure-free nights will continue.

Sometimes life makes you wonder what planet is in your personal retrograde.  So many small things going wrong is mystifying.  We already have two nurses who are either ill or injured.  A glass of water was spilled on Nick's new laptop.  My laptop coincidentally failed and needed a new screen display.  The internet and the telephone at home do not work.  Nicholas got locked out of his hotmail account and I am locked out of Nick's case coordinating Tyze website - home to all his appointments and care notes.  Today on the highway, a stone hit my windshield and cracked it.  I could go on.

The big stuff is all good and we are happy to be near family, be in our home and know that Nicholas is safe and happy.  His cold will get better, the windshield will be repaired.  The staff will all be trained and Nicholas will have his long awaited chance to see the Ottawa Senators play live at Scotiabank Place.  We'll get there.