December 02, 2012

Down by the river

About thirteen years ago I heard about the children's rehabilitative hospital in Jerusalem. I read that many children live out significant parts of their lives there and thought to myself that is exactly what I don't want for my son. Along the years of searching out a multitude of pediatric physicians specializing in neurology, vision, gastroenterology, neurosurgery, pulmonology, orthopedics, genetics, inborn errors of metabolism, as well as physiotherapists, social workers, ministry of health, ministry of education, ministry of social services and other rehabilitative schools and institutions, not once did anyone mention the one in Jerusalem.
At the time that I originally heard about the hospital, called Alyn, I reasoned that commitment to the curriculum there would require, if it was a fit, moving to Jerusalem. At the time traveling from there to Tel Aviv for my work would create serious time management issues; two hours minimum in each direction, plus driving to each housecall. This brought me to thinking about finding a place where we could receive comprehensive care for Segev as well as answer the needs of the family and my work. Surprisingly perhaps I began looking into either moving to Holland, where I was born, or back to Canada where in Toronto the Bloorview rehabilitative hospital looked promising. In early 2000 I began preparations in earnest for a move to either country. I went to Holland and traveled up and down the land with my mother, visiting schools, speaking to potential employers, finding an apartment and of course a day facility for my son. I found all those things in my short visit not only after having made contacts and proper preparations but with the help of my mother and some old fashioned Israeli chutzpah.
Canada was the back up plan and one I definitely favored less because of the severe winters I had grown to hate the last seven years that I lived there and the fact that the financial support in Holland was far, far better. In the end Dutch bureaucracy won out when they lost my entire file, application and original documents.
I felt fate had had it's say although it is fair to say that trouble brewing in the spousal relationship, exacerbated by the struggle to provide for a family while also dedicating myself to my son's care, the nature of which was becoming more demanding as time went on prevented me from mustering the gumption to make a second run at it.

In those days I did not know to take the perspective I have today. Then, there was only one thing in my mind: he had to survive and as noted, no one helped point me in any direction, lead me to some kind of framework with which to work. No suggestions were made whatsoever by any physician as a matter of fact, until many many years later (regarding a suction machine). I was always asking questions, looking for avenues and discussing those with physicians. I had added sufficient knowledge above my professional background to counter paths of  medical inquiry and that were eventually shown to be dangerous for my son.

Many of the choices I made though, proved to be erroneous, even harmful. When no collection of medications were able to control his seizures I investigated the option of implanting a vagal nerve pacemaker,   at the time a brand new treatment for children here, receiving support from several neurologists and finally convincing a neuro-surgeon to take on the case. Six years later it became clear that the implantation, directly or over time, caused damage to the phrenic nerve and paralysis of my son's left diaphragm, leaving his left lung, already compromised with bronchiectasis, basically useless and leaving him to struggle daily with his breathing.

I researched the issue of the implantation thoroughly and never came across such a complication. When I contacted the company that produces the device with concern that my son suffers from central apnea and asked them to comment on research that I had found where one child who had the device also suffered central apnea, their response was to send me a copy of the research I had provided them with. In other words they had nothing useful to say about any possible complication in that area and every other outcome of the operation, including paralysis of the vocal chords (which is how Segev came out of the operation) was known to me. But not the possibility of damage to the phrenic nerve.

When Segev's bowels were completely obstructed in 2005 I took him to hospital. While they Waited two and a half days for exploratory surgery Segev's bowels ruptured in three places and they lost him twice on the operating table before stabilizing him enough to transfer to the PICU in another hospital where he was still in hypovolemic shock and his chances of surviving were very slim. Had I been more assertive I would have demanded immediate surgery and possibly saved Segev years of  bowel pain which continues to this day.

Most parents look at their ill child and turn to medical professionals to take over that aspect. That was never the case for me, as far as decision making goes and often enough I have gone directly against supposedly 'life saving' treatments which later were shown to be based on misdiagnoses. My knowledge and intuition have, on occasion, helped to preserve my son's life. But as time goes on, both his body and mine have become weaker. Nothing is perfect, I get that. You can only do so much, another expression, is one which I'm not very interested in though. As you can glean from the previous posting, in the hospital in Jerusalem I quickly reached the point where my ability to function as my son's caregiver reached its limit. This issue of limitation has possibly been the greatest constant in my writings on this blog. 

With this and so much more history having driven the evolution of my son's care, I find I am still playing catch-up emotionally with the latest developments. Where his condition is ever more complicated, yet the treatment options that remain are only a spartan few. After visiting Alyn I have both a feeling of fulfillment with the options found there to help my boy and thoroughly discouraged because there may have been a window of opportunity to better help him during the years, which was lost.

I do what many have said is, to put it bluntly, quite stupid: I rail against the physical deterioration, with an invested intensity that can easily be described as fanaticism. There is one crucial element though which I'm not certain many can understand, or could possibly believe in, which has always driven me and that is the sense of finality, the knowledge of where the end of the game will place us. And thus, the need to extract every little nuance from our life experiences, as best we can, in order to not be left standing, months or, if fortunate, years later with empty hands. 
That craving for rich significant contact, because you know it could all end in an instant, not as some kind of cliché, since nothing has been imagined, a simple hard reality that challenges us to live completely while not falling into the endless traps of our own creation, our own shortcomings. Is that playing out? I'm not certain because we are ever in the process of learning. Different aspects of progress are simultaneously occurring.

Enveloped in the sense that you are compensating for the truncated life your child has, is a heavy burden. One many will say is even unhealthy, unnatural. I disagree. I believe it is simply a different approach in our complex existence. The visit to the hospital in Jerusalem appears to me another significant milestone that is part of the evolution of this intricate life with my son. I'm no longer concerned with whether it will be seen as a positive influence in the long term. It feels like floating down a stream. The water is rather cold but it looks like there are others there as well, in the water, and they seem to be smiling.


  1. You and Segev remain, as always, in my thoughts. Hugs.

  2. Everything you do, have done or have not done is based solely on your love for Segev. No one can ask any more of you than that, not even you.

  3. I am reading. And I am quiet. Watching the stream. And I agree with Ann.

  4. I agree with Ann and A. And I don't know whether I'm wearing a smile in the water of insanity or peace.

  5. I am like the others, here reading, listening, and contemplating your last two posts. Thinking of you and Segev as always.