December 31, 2012


Before my son Segev was born, in the morning I would take his brother and sister to kindergarten and then go to work, performing housecalls. In the afternoon I would return and pick them up, eat lunch with them and after a few hours together go back to work, regularly returning home at eleven O'clock at night. I worked six days a week but friday was a short day, then I would finish at seven. Still, my fees were extremely low because I was interested in gaining as much experience as was possible and never said no to a case, no matter how difficult. Naturally I struggled to make ends meet and provide for my family.

Before that, living in Canada I was enrolled in the full time study of Shiatsu therapy, simultaneously in the part time study of traditional Chinese medicine, took masters classes twice a week in the evening and two nights a week (sometimes three) after finishing up the day of study with treatments in the student clinic at 4:30 I would head off to hospital to work until 11pm and return home by eleven thirty or midnight. The next morning at 9:00 I would be back in class.

This is the work ethic that I brought to raising my son Segev. It is strange for me to consider the caregiving, the study, the treatments and hospitalizations, the searching for understanding that which he represents, as 'raising my son'. It's an awkward endeavor that has given my sense of purpose in this life a sharp focus.

I have made many mistakes and continue to do so. One of the most dangerous nights in Segev's life was during his lengthy hospitalization at the start of 2011. That night when no manner of oxygen supplementation was helping and his breathing so labored I feared the end could be only minutes away.

Recently, Segev's decline in lung function, in part because of his paralyzed diaphragm, has accelerated and the last two weeks he was extremely ill. So ill that I contemplated bringing him to hospital again after all the poor experiences with a health system that is not geared to recognize nor treat his chronic condition. He is getting better over the last two days because I learned from that experience in 2011; now I understand better the mechanism of his blockages and his partial lung collapse. Most techniques are the same,some new, but applied somewhat differently and for longer periods of time. As was the case now, often throughout the night, I have had to apply chest compressions and a variety of other techniques discussed in previous posts, for up to five hours continuously.

Exhaustion has overtaken me on a number of occasions. At the Christmas dinner with my children I had to simply stop treating Segev, leaving him listless on the couch in a somewhat stable condition, to be able to sit down and eat.

These are not happy times. The good of these efforts speak for themselves though, at least in my mind, while others, his mother included, ask how much benefit is this bringing in lieu of how much he suffers. Is this a losing battle?

That depends entirely on how you look at it. I am "challenged" by his condition but am now resigned to work at alleviating his discomfort, rather than trying to build him up or even slow down the decline. He is tumbling down the hill and there is no way I can stop it. There was never meant to be a way. But there is a way in which to do it that doesn't require this maniacal devotion and over exertion. Support from the medical community is slowly materializing, after nearly fifteen years. Social support, woefully inadequate, is making some squeaking noises in the corner, after fifteen years. They give me candy and take away my steak.

Putting him in hospital, probably the step that will be taken next time he is this ill, gives him a fifty percent chance of negligence killing him. That is one helluva bombastic statement, I know. Hopefully I will be able to expand on that at a later time, in order to examine the truth of it, and slowly expound ways in which the health system, with no added effort, can rectify this.

My son is caught between a rock and a hard place and I wonder if I should shed tears for him as I try to rejoice in his indomitable spirit. Because make no mistake, 'the spirit is willing, but the flesh is weak' finds no better home than here in the hermetic circle of care. For my son it is 'too late', for me I hope that there is no losing heart, there is merely temporary fatigue. Encouragement comes from far away and I am thankful that through Segev, I have learned to accept it because hardness is not strength. Suppleness is not strength, but the combination of the two creates an understanding of how things should be.

December 28, 2012

"Gone away"

Gone-away is a hill christened by me, an attempt to create a bridge between a mythical yet real place for my kids. When Segev was born, living in the hospital it was decided that i would do the research to help Segev and his mother would care for him in hospital. Each morning i brought my other two children to kindergarten passing by this hill and we would listen to Joanne Shenandoah sing "yakolihun". My daughter, just three, asked me what is she saying and I said "Gone away."
"What's gone-away Daddy?" she asked.
"That is the place, like that hill there, where you can go to and be alone and think of far-away places."
I've always promised myself I will take the kids, with Segev to the top of that hill, to celebrate his birthday.

From the post "You are dying of thirst" published August 24, 2010

'Gone away' is still there.

December 26, 2012

Time to get with the program

The way is long, where the road ends and the path is a blind love with no knowledge of when we are coming home.

What makes me strong? I don't know, only the things that make me weaker seem to matter. Is there air, where it is that I am going to, because it's tight in here, so small. So desperate for small changes. Every second ticking onwards with time standing still. A vacuum of decrepit illness, pain and my son heaving with the rasping exultation of air not entering his lungs. A domesticated battle of wits, like the dog chasing his tail.

No time for even a shower, no time for sweetness but salty tears waiting in the wings. Collapse and failure, with the circuit reenacted after a fifteen minute nap. The knees buckle under the strain.

Walking the long way, the path that leads nowhere except where we don't expect to be. Coming home when we are already home. Never left, always leaving.

Once again, close to shutting down the stories of  Segev's adventures because the dark seems to outweigh the light. While he has been sick for nearly ten days, prior to that he was already off kilter. The lungs, or rather his dysfunctional one, being the most worrisome thing but far from the only thing.
He seems so alone as he lays unconscious, his saturation bleeding air to the ether without apparent reprieve. We have a new record ladies and gentleman; sixty seven percent oxygen. The time he was measured with only fifty percent does not count as it occurred during an episode of central apnea.

I can barely make out the details anymore, let alone their proper order so I will certainly forgo the regular detailed description I always feel compelled to give. The minutiae of his decline. Once they were the elements of preservation as I championed his physical health with endless hours of technique and physical therapy, study and vocation, pounding the phlegm from his lungs, filling his body with medications to fight the endless demons of epilepsy, curtailing pain and discomfort with investigation, interpretation, hugs and kisses.

Always explaining to him how doting his stuffed toy Pluto is, eager to glean what is going on in his life as he sits perched eternally within hands reach, barking occasionally just like our real dogs. Warming his feet and legs, but not too much and checking his position for the fiftieth time and adjusting his back for the fifty first time so that the pressure is more evenly distributed and he can tolerate the sitting for a few minutes more.
Under my fingers I can feel his spine warping almost on a daily basis and my confused thoughts together with it. A sense, I suppose, of bewilderment.

December 20, 2012

December mourning

When we speak of disability, or as I prefer to call it, physical and/or cognitive compromise (PHaCC for short, as in "is he disabled?" "Yes, he's PHaCC'd"), especially, as is the case for my son, extremely disabled (ePHaCC) nothing speaks more clearly of the concept of  'outer shell' than what happened to my mother, Hansje.
To see the change of a once extremely vibrant person, who's calling in life appeared to be to spread a message of tolerance and acceptance, especially of difference, through her direct interactions in daily life with a myriad of individuals she would meet, into a completely helpless being unable to communicate, would be heartbreaking if not for her message. 
This rawly intuitive message, coming directly from her heart, was often met with an awkward disdain (fortunately I was eventually able to  mature enough to see it in proper context, in part due to my life with Segev), but throughout my conscious memory of my mother I saw many whom usually respected her intentions, even if they too did not understand them fully at the time. 

When Hansje spoke she did so in a unique way, not merely using her hands to gesticulate for emphasis but actually miming concepts to enhance the understanding. For example, if she was talking about how something could affect our hearts she would form a shape with her two hands and pull them towards her chest. Whenever she said, "for me" or "that's just me", she would always put her outstretched palm over her heart. And with those phrases and gestures she would often not allow a discussion to escalate into an argument because she had that special quality, where she would never argue, always let someone else have the last word and never brood over it later.
She had her own opinions, well formed, which she could explain in meticulous, confusing detail; because it was always about our heart and what was going on in there. The intrinsic value of a person's feelings. An unalienable right which should be respected, that she put into practice continually with that attitude of not arguing, creating a vacuum where anger eventually cannot exist.
She loved talking to people, it was a lifeblood for her and people were often literally stunned by her honest intentions, which never bordered on the intrusive or belligerent. She was not an evangelical salesperson bent on introducing you to her view on life. She responded kindly or often took the initiative when she intuitively felt a person needed to hear a good word, a phrase of encouragement, which she never plagiarized, always coming up with her own unique phrases. This led often to a moment of partial or not understanding, but also as I said, a stunned response. Later in her life she repeatedly told me, even prior to her losing the ability to speak, 'Eric you are my voice, you say and write what I feel'.

And there you have it, this very lively honest woman, only 65 years old, searching with her being for heartfelt connection to our positive core human values, became ill with ALS. The first thing that went was her ability to speak.

But still she had it in her. The picture below, my favorite and taken by my daughter when she went to visit her grandmother, is of my mother after she could no longer speak and the disease had rapidly progressed to her legs:

pen ever in hand, to continue her communications

She accepted her illness with a 'whatever', in the same way that she appeared to superfluously dismiss a tragic past where her father perished when she was a year old and her mother, whom she was prevented from seeing at the end, when she was 17. In this sense she was my opposite, with her deep feelings being only fleetingly expressed in words and strange sentences, since the words themselves mattered little compared to the inner life, the true motivator.
That precarious relationship with form, already expressed at age 18 when she appeared in the documentary film 'mensen van morgen' (People of tomorrow) and responded to why she wanted to become an actress; "it's more fun to pretend", she said.

But when her own body started to crumble, as can happen in a myriad number of ways to any of us, she could not and never tried to pretend. She never ran away from it, tried to hide it. I don't honestly know if she was even a little bit scared of it. She accepted it with an unspoken bravado. She didn't try to belittle the disease in an attempt to get the upper hand psychologically because there was no need
Her mind stayed clear until the end as she watched all of her bodily functions taken over by strangers who suddenly became her intimates but finally in a way,  obtrusively, forcefully, albeit with soft spoken kindness, which was completely counter to how she had approached the intimate matters of heart and psyche of others, with a larger than life genuine understanding.  Reduced never the less to an object of care, not on her terms, this invasion of her body she wailed against in letters, until I wrote to her the following words;

mom, remember that this is not being done to you, personally, this is being done to a dressing, a body that no longer functions. They can't do anything to you.

This was enough and she would later write that she was able to finally and completely accept her fate because of those correspondences. At the end what she needed most is what she gave to others freely all her life, support and simple affirmation. And with that purpose in mind I traveled at the end of December in 2011 to be with her, despite my responsibility to my son, to allow her to let go of this life whilst being awarded that same caring by someone who truly knew her, whom she completely trusted. I told her how much she means to me, how much she has helped others, that everything will be OK with those she is worried about (the last thing she ever wrote was concern over whether I could get a glass of water, seeing as I had just made a long journey to come and see her) and that I love her.

The shell had withered, horribly, but inside was still the vibrant spirit of a person who had much to share with the world. A gentle soul whose foundation was respect, who faced the annihilating force of her illness without drama, without anger.

How does that speak to our acceptance of the of inner life of others, who perhaps are unable to express themselves in ways that we can understand? In matters of the heart where form pales in importance next to the deeper and much more real force of capacity.

December 17, 2012


With such extremely physically and mentally compromised children as my son, it is the attention to small details which gives us an important tool in building protocols that benefit their wellbeing.

A case in point was this morning. Struggling to get out of bed with aches and pains I made my way to the health clinic to find out where the authorization for the Bipap stands, as it is essential to start Segev on the device as soon as possible. Procurement and authorization are of course the sworn enemies of bureaucracy and just as I had predicted things were not going smoothly. So to see if I could get things running smoothly an early visit was in order before getting Segev from his mother's.

I had to also fill several prescriptions and hoped to get some shopping done, but then his mother called to say he was not breathing well and his oxygen level was stuck at 87%, despite constant supplemental oxygen and her working on him with PT. 

Being primarily a bodywork therapist these last 23 years I'm always looking to adapt movement and ergonomics into specifically tailored techniques. Rarely do I go by the book and Segev and other children have taught me that you need to write the book, not read it.  Chest compressions in such a situation can help, but because of Segev's massive kyphosis you must simultaneously give contra pressure on his back to effectively move the air out of his lungs, in the hopes of opening the blockage. The two sided pressure then lets his head tilt back more, which obstructs his airway necessitating holding his mouth closed. Another pair of hands are needed. I quickly called my daughter but had forgotten that Hanukah vacation was over and she was back in class. 

Pressing on the area close to where the phrenic nerve, responsible for activating the diaphragm (paralyzed in Segev's case) descends into the body also can raise his oxygen level, through a poorly understood mechanism. 
"Did you press on the phrenic nerve?" I asked her. "Yes, I did" she answered. This conversation is taking place while I am filling the prescription at the pharmacy. The pharmacist doesn't have all of the meds, but the owner, hearing this says she is willing to check if it's in stock. No, that won't be necessary I say. In the meantime the pharmacist has left me to do something in the back room and the owner is once again busy with her customer. "Can we finish up here?" I ask, feeling that distinct, muffling pressure at the back of my neck whenever a bad status report is given me concerning my son. I forget to tell his mother to use the ambu-bag to force air into his lungs. Another technique, like the compression and the pressure, there to add a small improvement to Segev's breathing. 
"Give him the inhaled cannabis", I tell her, hearing in the background the labored breathing of my son and the alarm of the pulseoximeter. The cannabis, initially for pain, has proven effective in relaxing his breathing and even affecting certain of his smaller seizures.
When I arrive at his mother's house Segev is barely maintaining 90% while on four liters of oxygen. The oxygen condenser is huffing and puffing and Segev is completely non-responsive. I listen to his chest to determine if the left lung is open or not but this is not easily accomplished as he lies on his side on the couch and my neck is so stiff I can barely turn my head to the required angle.
"It's closed", I tell her and begin using the now-remembered ambu bag. It proves to be ineffective so I move on to pressing on the area between his shoulder and neck, which has the effect on the phrenic nerve. I can't shake a vague sense that something isn't right. The muscle, ever increasingly like a drum snare, stands out and I know from experience that my pressing is causing him severe pain, yet he doesn't react in any way. His breathing is not labored, he appears calm, yet his oxygen level won't rise. Concurrently thoughts of hospitalization as well as a tinge of despair sprint through my mind. 'Something isn't right', I think. His level rises slightly and I proudly proclaim to his mother, "you see, you have to keep at it!"
But then it drops off again, admittedly still one point higher than I started but, as she points out, "he already had a rise before you came."
Dejected and worried I start to think what else there is to do. My first thought is to increase the oxygen output, the thing I least like to do because then you are not actively doing anything to remedy the cause, being merely symptomatic in treatment. It's then that I notice what's wrong. The nasal cannula usually whooshes loudly as the oxygen rushes through: it was completely silent.
"He's not getting any oxygen!" I shout. I go to the machine and find that the water reservoir was not threaded in place properly and all of the air was escaping at the start point. 
Fixing it in place I say, "now you'll see that he goes up to 98%" and so he did.

Being aware of the many components involved in containing even just one problem is a slow process of discovery and one that should never stop.

Checking and rechecking meds and equipment, never relying on the fact that you've already done each action a thousand times, just isn't good enough. We get tired or simply aren't aware. Distraction is also particularly dangerous and I've found that if there is someone else with me, especially if there is conversation involved, while I am taking care of Segev I can easily miss a step in keeping to his schedule. Conversely habit is also something to be wary of because you can get to the stage where you're sure you did something only to discover later that either you didn't or you have reason to believe that you didn't. This is why everything that goes on with Segev gets written down.

Most days these crises of breathing or seizures or pain require hours of effort, but find (at least temporary) resolution never the less. And then we get this as a reward:

December 16, 2012


Knowing true responsibility for your actions means this: be a man of action in small things. Because much of what is done in the world is clearly done by men of influence who are not aware of the far reaching repercussions.

Let other men gather bright gold to themselves and own many acres of well-ploughed soil, let endless worry trouble them, with enemies nearby, and the peals of the war trumpets driving away sleep: let my moderate means lead me to a quiet life, as long as my fireside glows with endless flame.
Let me plant the tender vines at the proper time, tall fruit trees, myself a rustic, with skilled hands: nor let hope fail, but deliver the pile-up fruits, and the rich vintage in overflowing vats, since i worship wherever there's a stump left in the fields, or an old stone at the crossroads, wreathed with flowers: and whatever fruit of mine the new season brings I set as an offering before the god of the fields. –Tibullus

In reading Ann’s summary of her year I was moved to tears. What a tremendous thing to be able to put into a concise description, for others to peruse, the many afflicted moments of drama, but also joy, that stand in inverse proportion to the inability of a bare description to give them their due.
“What a great idea”, I thought, but am entirely unable to do the same as the tears which I shed while reading are becoming more and more spare. Last week two children from the Ohtahara support group passed away. Tiny little things that barely lived but because of their precarious condition, that much more loved. Each of us have a realm of focus, our interests and concerns but my dry eyes and dry throat present an empty retort to such an onslaught of misfortune.
With another visit to Alyn hospital looming in January, bereft of the regular machiavellian urgency that would normally accompany a stay in hospital for my son, everything feels flat and barely necessary. And I know the opposite to be true. So what is this feeling? I’ll spare you the mystery; I’m feeling sorry for myself.

Recently I felt entirely betrayed by a friend, with true friends being so hard to come by, a necessarily hard surface in my psyche like the rough grating of granite on granite, seems to take the place of trust and openness.

By the end of this month one year will come to a close, without my mother’s laughter and good nature. With her needless suffering echoing in my thoughts, waiting for due process, waiting for me to address them.

It seems to be all about me and my inability to galvanize a plan to set things right. But of course everything is fine if we have mild intentions, humble opinions and are soft spoken. If we accept that there is nothing left to chance, only to personal ignorance and the mechanics of a process unknown. Strange to feel let down by oneself, but then I know the accruement of fatigue plays tricks on our minds. Fewer thoughts, small ambitionless actions, tiny circles with slight ripples are the order of the day.

December 05, 2012


I clutch the wall as all hope leaves me, so as not to fall into the street where wet cobblestones wait to frame my anguish, my wanton crime with just punishment born of a sentiment that relishes not only love but rather carelessly, life.
                              - From my trip to see my mother, December 2011

Wednesday night in hospital, as I wrote earlier was terrible because Segev's oxygen level went down and his CO2 level went as high as 47. Back home, Friday morning, while he was at his mother's she called to say he was down again and increasing supplementation wouldn't raise it. I rushed over and started with the ambu bag which had little effect. Besides the collapsed/obstructed/non-functioning left lung Segev suffers form upper airway obstruction because his body doesn't maintain a normal ergonomic relationship; his jaw recedes too far back resulting in airway obstruction.
When you see a photo of Segev it is invariably with his double neck collars, a design I instigated to prevent the tracheostomy by holding his jaw in place but which no longer suffices. Before and after the ambu I did chest compressions but this also was not helping so I took him out of his wheelchair and put him on the couch where I could get better access. Because of his diaphragmatic paralysis the area between the shoulder and neck rises up and becomes particularly hard and finally I found that (in combination with the other activities) pressing there in sustained fashion caused enough change that his oxygen level slowly began to rise. It only took about thirty minutes but I was not much relieved at the thought that if two episodes had occurred so close to one another, an additional one could be close and signal a significant change in the game.

Monday night.
Already in bed, but not quiet at all, suffering constant small seizures with twitching of his hands, a sign normally indicative of a mounting phlegm accumulation. Then at 01:30 the pulseoximeter started is screeching. He was seizing frequently again and so I felt that he had reached the point where a dose of diastat had to be given.  I fell back onto the bed, exhausted, trying not to get angry, trying to focus. The alarm started going off again because his oxygen dropped. I was so tired (was able to put him to bed only at 00:30) that while I tried the compressions and saw a slight improvement, I did not go directly to the ambu bag or the applied pressure on the shoulder area. After five minutes the alarm would sound again. And again and again.
Finally the bag was used but to no effect. Having him lie on his other side to release pressure from his bad lung also did not help and for him to lie on his back I needed another person with me, with no guarantee of improvement. I increased oxygen to the max and tried pressing on the area between his shoulder and neck. For a few minutes things would settle down and I would plop back onto bed hoping he would sail through what was left of the night. The seizures kept on coming.
Through all of this he was not responding. His breathing didn't appear stressed and his color was fine, despite frequent dips to 84% and even lower. Even vigorous chest compressions didn't wake him but it did immediately initiate another small seizure.
Because the oxygen wasn't going right I didn't feel comfortable in giving him another diastat until 04.30, enough time having passed that there wouldn't be an accumulative effect, as I have seen happen several times in the last few months. The seizures finally diminished and then I called my daughter into the room and we worked together to stabilize his breathing. Finally at 05.00 the situation turned around. My daughter went back to her room and I achingly climbed into bed. Five minutes later the alarm began again. I worked on him for another hour and at 6 O'clock he was stable, oxygen levels normal (with supplementation) and I had two hours to sleep before it was time to start his strictly controlled regimen of medications and so on.

Segev side view

Those two hours felt as though they passed in a mere five minutes, I got up and prepared his meds, administered them through his gastrostomy tube and then snuck back into bed for another 45 minutes before slowly starting the process of getting him up. Due to the diaphragm paralysis his intestines have moved upward to his chest and since they compress his stomach there is little space available for food. This necessitates giving him boluses of food nearly one hour apart (a kangaroo is impossible due to his seizures/flailing arms) and so keeping to a schedule becomes critical if I don't want him either to vomit from excessive pressure in his stomach or suffer malnutrition. This reminds me to get a soy based formula again so that I can give him more nutrition in between meals.
Functioning the next day is haphazard at best. I need to muster focus and am having a hard time of it. There is nothing that I dread more than to make a mistake in the day to day care, mixing of medicines and such, that was established with such delicate intrigue, the balance of his condition wavering as it does so often.

December 03, 2012

You again?

I write here because I love my son. I write because I believe that his story needs to be told, not for his sake, although I have been able to make positive connections to some very special people through his story, but because there are many who undergo similar devastating circumstances, thinking as I did, that they are doing so quite alone.
It has happened on several occasions that individuals who have entered my home in order to assist me with Segev or have gotten to know our situation have made comments of a similar nature to me.
Formed as a question the gist of the comment is usually,

What will be with you after Segev is gone?

Then, without further ado, these individuals offer to answer their own question:
You’ll be destroyed.
You won’t know what to do with yourself, you’ll be lost.
You’ll have nothing to cling to anymore.

A comment, by Genevieve Jurgensen, on my recent piece “Les uns et les autres” here on the blog, is of special value to me because she is a person who in her life was able to use great personal tragedy to create a positive force that emanates far and wide. She is an ambitious person who succeeded in having a very significant impact on road safety in her native France. I too am ambitious. My knowledge and experience as a para-medical and extreme caregiver has allowed a particular insight into areas which can benefit children such as my son and others in similarly catastrophic conditions. I would like to think that sharing certain aspects of our lives are part of an evolution of thinking and ability in dealing with such situations. My own doubts and concerns lie exposed in order to have a transparent conversation, a prerequisite to true learning.

What will be with me after Segev is gone? Perhaps rather startling, perhaps obtuse, perhaps an insightful question. But I have an ambition which transcends my time with Segev which is to show that despite the hardships there is something useful to be gleaned. There is something tremendously positive in the experience, despite the obviously difficult struggle.
When forging iron into a tool you must subject it too unbearable temperatures and pound it endlessly into submission. The same goes for the writing and hence understanding. Here there is no fixed form or certainty, simply the endless pounding of molten experience. Slowly form and function will be clear.
Resilience naturally emanates ambition. You can be broken, but that doesn’t indicate a lack of anything. Not perception, nor inclination. Not a lack of fortitude nor conviction.
The greatest resilience I have witnessed in my life comes from my son. Don’t they know that such a strength carries you forward? A preemption of certitude that will be waiting?
I know exactly where I want to be ten, fifteen years from today and it has everything to do with Segev, whether he is here with me or not.
So the next time someone says to me, ‘you won’t survive’, I will nod appreciatively, so as not to appear antagonistic or closed to ‘helpful criticism’ and remain polite. But I will be thinking only one thing to myself:


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.

November 30, 2012

Les uns et les autres

More and more it has come to my attention how caring for my son has isolated me. It has left me with less understanding of how people relate as I have gained a deeper understanding of the essence of caring for another person who cannot answer their own needs. 
In trying to extricate people from difficult circumstances I have lost an ability once taken for granted, where the sense I could make of a situation was a shared understanding. Now my burning desire to garner a true resonance with ill health and to sway its course has brought me to a place where everything else seems, well, less than whole. In other words, I've become a fanatic.

The last three days were spent with my son in hospital, as I told one friend, a "last hurrah" to bring to bear the perspective of others onto his health problems because I know that, without causing him duress, there is still work to be done. I can no longer build him up but there are still avenues to explore to slow the rate of decline. Through perseverance and perhaps quite some luck hospitalized consultations were scheduled at the children's  rehabilitative hospital in Jerusalem.
Without regard to outcome in the limited time available, there was a concerted effort to explore options and a genuine interest in supporting us as a family caring for Segev. How ironic that the only other person able to accompany us and most needed, was my ex-wife, Segev's mother.

So many hospitalizations over the years. So often my decision also not to hospitalize but rather weather the storm at home with absolutely nothing holding such a decision together, not even hope, but rather the ephemeral quality of faith. So very very strange that at such a late stage in the game perseverance and luck became co-conspirators operating wholly outside of my ability to control them.

When I wrote previously of the meeting with the head of ICU, a kind of mechanism was set in motion that took me completely by surprise and by the time I had pushed forward with appointments and authorizations it was too late to ask myself that question to which the answer turned out to be "no": do I have the strength, at this stage, to make another run at it?

We spent three days in hospital, with practical application of respiratory devices and a variety of consultations, x-rays and social support which has left me feeling 'wiped out'. 
I don't trouble myself about the sense of confusion I have, after so many overly intense years of directing action and mitigating influence. Of studying information discarded seconds into a meeting, or rehearsed conversations designed to steer thinking towards specific lines of investigation which has become a nearly futile endeavor.

In hospital, such as last night, one of the worst nights ever as I worked from two O'clock in the morning for three hours to make a change in Segev's breathing as he calmly remained apathetic yet in the end, and for the first time ever, did not yield to my relentless efforts, maintaining a serious deficit in breathing. Finally at five O'clock I called his mother to come, not even thinking of asking for relief but knowing that I was waning, if not in resolve then in ability. 
Again irony struck as for the first time I conceded defeat and let myself be convinced that the only way to keep on going was to go and rest.

You like to believe that with all the experience you gain in being an extreme caregiver, a parent dedicated to compensating as best you can for what you see as a gutted life, with decades of dedication to treating patients with their ills and woes, that you would necessarily become hardened with the vigor of knowledge and steeled by the application of grit night and day, endless night and day.
But what you become is actually economical and specialized. Your clarity is unsurpassed in the extremely narrow margin of life you relate to (since much is relegated to a place of lesser importance) and your legendary strength exists, no not merely in your own mind, but only under well controlled circumstance.
In other words you are weak but you fight to admit such a thing, simply because you fear that weakness will hurt this endeavor to submit circumstance to a more favorable outcome.

So I was grateful to yet again be humbled by the stay in the small specialized hospital in Jerusalem. There is nothing quite like seeing so many people, children and infants in such a wide array of severe physical and mental compromise, represented in one place. So many standers and walkers and wheelchairs, occupational therapy, cushions and braces, respirators. Different forms of communication, motor control, and surgeries undergone. Smiles and quiet conversations, dedication.

We entered a socio-medical system which has nearly always failed my son due to his unique set of problems and my lack of compromise. 
It's simply not possible to maintain the protective environment, mostly the 'home routine', in hospital. The sheer energy of the place was sensory overload and brought social awkwardness to the forefront; congealed around my spartan social life and nearly singular focus on my son and I felt put through the grinder as certain issues arose. Adjusting to a room full of children, each one with serious problems, all ages, everyone's alarm going off for a different reason, sometimes in unison, mostly during the night, is cause enough.
Sleep is even more of a joke than at home and as the children's stories becomes better known with each passing hour spent in the hustle and bustle of a respiratory rehabilitation ward room, you wonder if you have the strength to stay and play out your hand even though you have no idea what the game being played is.

Segev had ups as well as downs. There was a great deal of inconvenience to overcome (no coffee within five kilometers being one of them) as well as the necessary tension that ex husband and wife can have in such circumstances. Without a doubt though, to further add depth to this different experience, Segev behaved extraordinary on occasion while there. One physiotherapist spoke to him to gain his trust before placing the IPV firmly on his face and his eyes darted toward her face, a first in all his life, as though some connection snapped into place. When non responsive his stupor was as deep as ever but with less visible tension in his frail body and when he was animated, certainly more there than usual, his vocalizations were also consistently longer.
He understood he was in a different place and reacted to the increased level of activity around him which made me remember the bitter feeling of shame when years before, his circulation in public diminished as the burden of his condition made it unreasonable.  

I'm glad for the assistance in these attempts to help my son, regardless of outcome. What a coincidence that as I was uncertain if I actually had the strength to go through with it, indeed finding myself confronted with a much greater weakness both physically and mentally than I could possibly have realized going in, at a time which can only be described as Segev's limelight. Part of my strength has always been my son's resilience and good nature, the purity of his life experiences. For some part  his in return has been my not knowing when to quit. All this may sound rather premature and bodes of self fulfilling prophecies but, as a friend said to me recently, as though these experiences necessarily envelop us in a dream like confusion, 'none of this was imagined'.

November 19, 2012

Some things never stay the same

In an attempt to follow through on this ambitious project to better my son's chances at survival, to address the decline in his lung function, I met with a chief pediatric neurosurgeon to determine if visualizing the phrenic nerve via MRI would give us useful information and if so to get a written recommendation. When I called the pediatric hospital out-patient clinic for an appointment I was given a one and a half month wait that has gone by surprisingly quickly, filled as it was with such a constellation of activities surrounding the issue of Segev's impending admission to the rehabilitative hospital in Jerusalem. Then the day of the meeting came, coinciding with one of two work days where  house-calls to patients has been a mainstay for nearly 23 years. And I forgot about the meeting.

It was too late even to rush down to Tel-Aviv and be a last straggling father, desperate for better information and support. Kindly they added me to the following weeks' horde of parents, all of whom came with their children; after brain surgery or for consultation while I would sit quietly on the hard plastic seat in the brand new building, observing these, mostly quite young, parents with their babies, wondering what was still waiting for them as I had passed through similar clinics and trials with my son for fourteen years and counting.

What struck me most about the people there was a sense of calm and even contentment that they radiated. Still, I couldn't help but feel a brittle undertone, hiding beneath the surface, waiting for some moment to make its presence more substantial. These were problematic children, not so much in behavior but in medical status although it seems that the help they received at the hands of the Professor, assuaged their fears, as several spoke glowingly of his accomplishments with their children especially in light of the horror stories of misdiagnoses at the hands of others. 
Then came a mother, thin, very 'well-kept' with make up, fashionable accessories, proper hair, leather boots and an economy of movement that shows a person who is either shy or conversely, knows exactly what they want. She was very patient with her daughter who's head shape, despite excellent body motor control showed dysmorphic features. The girl, perhaps nine or ten years old repeated every sentence the mother said and spoke frequently, asking questions that children often do about their environment, affirmations, "Are we here to see the doctor?" and a running commentary on noises and movement in the waiting room.  After nearly one and a half hours of waiting the mother was showing some signs of agitation, she tried unsuccessfully to turn on the large screen television in the waiting lounge but I was surprised she hadn't brought a book or toy or engaged her daughter in some kind of game. 
The girl was now sitting next to me and while she looked at me she asked , "are you my father?"
I waited for the mother to respond and she did say something which I didn't quite understand. I thought of saying to the girl, "perhaps I remind you a little of him?", out of an awkward sense of trying to help the mother, who perhaps had heard this many times before but of course only said, "hello" after the girl had turned her head back to me.
"What?" she said.
"Hello there." I offered.
Without blinking she gave me a "wassup?" but again turned back to her mother, not expecting an answer or perhaps wary of the possibility that a conversation would ensue. 
"You're bothering the man" the mother said.  Again I felt like saying something, to let the girl know that it was of course no bother and to let the mother know that it might actually be OK for her daughter some more interaction (there was also none between the other children but then most were infants) but then I knew that there could be a damn good reason why the mother curtailed the possibility. I reasoned that her daughter might get upset if the conversation went on, she might get confused or hyperactive and everything about the mother, because of the terse movements of her arms (though her walk was actually a bit swaying for her thin build) and the lack of engagement of her daughter meant to me, control. A precarious situation, especially in a public situation for children who might only thrive when in the comfort of their familiar surroundings, and so I said nothing at all. 
I did have to think about the girl's question, "are you my father?" It might have been a random sentence, such as also regular, smaller, children throw out there, without any real context. But while she would repeat each sentence her mother spoke her observations were firmly rooted in the here and now; she never went off on some fantastic tangent like when small children slip into their own world and create narratives that are more real to them at that moment than what they are actually doing.
It seems the girl was expressing a real deficit in her ability, at least in that environment, hence the repeated affirmations  in an attempt to remain attached to what she knows. Perhaps at home she would never utter a similar sentence and so the mother is able to separate the context of her daughter's identity into familiar environment and 'other'. But that in itself is not an easy pill to swallow, to realize that in certain circumstances the disorder, illness or neurological deficit, is our child's identity.

I waited for nearly two and a half hours and the neuro-surgeon, replete with entourage of physicians hoping to specialize in his field of expertise and medical secretary, called me in.
I was back out in under five minutes as he sucked the wind from my sails. Well, that may sound harsh, he was congenial enough but I guess he just caught me by surprise when he said that an MRI won't allow us to visualize the phrenic nerve and possible damage and that in any case the treatment of adhesions by debridement was "no longer really an option" and the best way to go was the recently introduced diaphragmatic pacemaker (which I had discussed with both the pulmonary professor and head of the rehabilitative hospital).
I've put in the paperwork to get (financial) authorization for a three day stay at the children's rehabilitative hospital in Jerusalem and presently am waiting on an official date for the admission (as soon as a bed opens up). 

Segev continues to require close scrutiny as his seizures are never more than slightly controlled and his base saturation level, seen when removing the oxygen cannula when bathing, changing him etc, continues to drop. Over the past few days he has been complaining more from pain and I have finally had to order the vaporizer machine from abroad to use with the medical cannabis (finally authorized!), as I was unsuccessful in obtaining it by other means (lending, voluntary homecare organizations) and the normal cost of acquiring one here is over a thousand dollars. So I am anxious to try it on my son as it has been shown to benefit lung function, inflammation, pain and yes, even some seizures as well as helping in spasticity.

Last night I returned home late from work and over the phone, during one of my frequent check ins with Segev's mother, I could hear him crying from pain in the background. Because of the air raid sirens (one of which occurred while treating a patient and thus necessitated a hasty dash to the in house bomb shelter) I didn't linger around Tel Aviv to grab even a quick bite of dinner and when I arrived home to the village I hurried to his mother's house to see if I could do something to alleviate his discomfort. 
I have been blessed with certain abilities to be sensitive to the origins of discomfort others feel and so as I was saying hello to Segev upon arrival, (and he smiled firmly as his eyes lit up before returning to complaining) I instantly felt that his left sacro-iliac joint was out of place as well that he had air which needed venting. The joint manipulation didn't go easily this time, necessitating a different approach, which immediately released it, causing a big smile and some loud vocalization. I continued to examine him and while I massaged around his lumbar spine he gave me a dreamy, contented look, that filled me, for at least that  brief moment, with tremendous pride.

November 17, 2012

Defining some concerns

I’ve been reading William Peace’s blog for some time now as well as Louise’s blog and recently they wrote pieces which seem to me to be connected. Peace describes his frustration and yes, anger, at not being seen as an equal. Because for many, perhaps a majority, looking at a person in a wheelchair causes their psychology to look for a solution to the fact that they are not the same, yet consensus thought tells them that they should be accorded equal status. What lies at the heart of this is the inability to see a disabled person as being the same as them, which is actually the case. As we have tremendous differences, thus we are the same.

This dichotomy is resolved by seeing the disabled as people in need of help. They are given that help because they need it, correct? And in giving this help we can add to that sense of worth which has obviously been eroded by the fact that they are disabled. Or, are they the same person, more or less, who want to get on with their regular lives with a somewhat different perspective and ability? When someone like Peace changed from being bipedal to ‘chair bound’ did their personality also change? Their ability to think and interact? What really changed? I believe not much, except for what society imposes on such a person. That may sound like an easy scapegoat to hang blame on. Society is at fault. But it’s just a word, a description of consensus opinion. In the end society is influenced by many factors and is made out of people’s behavior and opinions but mostly, anthropologically speaking, by what people don’t do. If a way of thinking is implemented and we are not even aware of it such as cultural bias, or perhaps the good example in the special needs community the campaign to eradicate the use of the word “retard” as nomenclature that saw a crescendo over the last year, change is impossible. Thus the need for a different way of looking at things, which Peace and many shout from the rooftops, must start with individuals.

An anecdote that Peace shares about changing a flat tire and being offered help, despite that he didn’t attempt to wave anyone down showing that he felt confident he could do the repair by himself, shows how the perception of a wheelchair carries with it the innate sense of inability. Peace rails against this kind of thinking, which I believe to understand; it condescends because while the intention is good it is also very misguided.

In Louise’s piece she asks if successfully advocating for the acceptance of difference (disability) doesn’t require a proprietary lexicon, not only in word but in way of thinking.

What isn’t needed is some complacent catch-phrase like, perception of difference is evolving. But does a more evolved way of looking at our differences requires a new canon of words and phrases? Do these things go hand in hand? Probably, as an anthropologist, William Peace could answer that question. Did civil rights movements in France or America, revolutions in South America, have their own jargon and catchphrases? From a first look it seems to me that there are also generational colloquiums, which represent the perspective of a known concept but in a different context.  Should there be new meaning applied to old concepts to shape people’s understanding or introduce newspeak to sweep out old perceptions? Because what is needed here, in order to procure a better relationship to the special needs or disabled segment of society is nothing short of a massive shift in how we view our coexistence.
In today’s world of electronic medium social change appears just a tweet away, while the truth is that such fomentation builds over time until the atmosphere of change becomes the change itself.

Will the masses be swayed to perceive ‘disability’ as William Peace envisions it? Or as special needs parents who advocate inclusion demand? True change, the deep change of a paradigm shift, happens when the need exists and carries enough momentum. A momentum that is often fueled by outrage. Velvet revolutions are rare; change seems to be more and more violent in nature around the world. Some claim societal values as a whole are eroding and the first victims, as aptly seen in the UK, are the values of tolerance towards disabled, compromised individuals. The likelihood of moving from that handicapped view of disabled to simply an accepted difference is becoming smaller, as a shift in power structures solidifies utilitarian world views. Are we moving toward a ‘the strong will survive’ causality? But, haven’t we been there already and isn’t it time to move toward an egalitarian world view?

Just as there are vast differences in how we perceive, how we walk, what foods we like and what our abilities are, we will not see some kind of unification theory of societal values. At best we will see what we already have, that the law of averages, a kind of mediocrity, is the essence of communal living. To add gasoline to the fire, as a species we are driven to push the boundaries of our physical environment, squash previous ‘impossibilities’ and we laud extreme athletes. This adulation of very extreme sports which kill and maim daily is of particular worry to me.  And then we nod appreciatively when we see skydiving wheelchairs and the special Olympics, because they are involved in activities which mimic those of the adulated.

A few years ago there was a story here of a man who stopped by the side of the road to change his flat. He got into his wheelchair and proceeded to change the tire. It was winter, but the kind of winter you have in Israel or California, cold but not freezing. He left his cellular in the car, which was standing on the muddy shoulder of a small byway. Apparently he slipped from his chair and in the mud was unable to clamber back. Perhaps he slid a little ways away from the car. The family were worried sick and tried calling the phone carrier to get a lock on his location. They refused and the family waited several hours before notifying the police. As soon as the police were in the picture the phone company revealed his (approximate) location and a search was mounted. By the time they got to him he was pronounced dead due to hypothermia.

This may sound like exactly the kind of rebuttal story a wheelchair bound advocate dreads to hear. Interestingly it may be due to poor circulation associated with paralysis that hastened the effects of the cold, leading to the man’s death. But here’s the rub, if the family had responded sooner with a plea to police his death would most likely have been prevented. More so, anyone can slip in the mud, hurt themselves, lose consciousness and perish. Living in Canada I recall the story of a woman who went out of her home in a snowstorm to the convenience store, not more than a hundred meters away. Young and healthy, she became disoriented in the blinding snow and cold and wandered off, found dead the next day.

Two days ago I went in for a rare visit (being the hermit that I am) to the convenience store here in the village and the owner, who always enquires after my son’s wellbeing, told me of his brother in law who had done his annual physical, replete with expansive tests, a few months prior. “You’re healthy as a horse” the doctor proclaimed. Two weeks later his skin color changed to yellow and a week after that his wife, a nurse, took him to hospital where he was diagnosed with leukemia. A partial match was made with his sister’s bone marrow but the transplant didn’t take. Now, with him bedridden the family life is, to put it euphemistically, in disarray and they struggle to make ends meet. There are mortgage payments, school tuitions and extra medical expenses of course, besides the devastation of the illness itself.

Here, to borrow a phrase from popular culture, lies the golden snitch; without proper support mechanisms in play, whose existence is dependent upon large scale awareness of its need, we all can change into someone, who like my son, cannot function without care. From that frame of mind, of proper support mechanisms, flows an entire world of diversity in care, exposes a disparity between perceived social values and truly assimilated values and with it a better understanding of what we don’t do in society for a more cohesive coexistence.
We are very concerned today with having our voices heard. It reminds me a bit of the wave of independence which swept Eastern Europe leading up to and as after effect of the Soviet Union collapse. We crave recognition. Facebook and the like allow us to take it further and recreate our personas or at least tweak them and the din of cyber noise is rising; values are changing as perceptions are shaped by online experience in much more pronounced fashion than the 1970’s concern over how television is influencing children. Where does popular opinion lie? With popular culture of course. Younger people today are being influenced more and more by the online culture and its most popular exhibits.

Suffering that goes on in care in hospitals, institutes or the home is largely not discussed. Differences, down syndrome, disability from accidents (no wonder there is a culture of ‘regaining normality’ pushed tirelessly) are not mainstream.

So we have to keep on pushing until we can find we have ‘come home’ to the world we know we should really have. What options do we have, cynicism? The, “shit happens” confabulation?

October 31, 2012

Dance of St.Vitus

Several moments
Darting eyes
Staring foment
Wanton cries

Stiffened intent
Cascading surge
Consciousness rent
Electric purge

Quiet sob
Relenting sigh
Flickering orb
Nature's lie

October 18, 2012


Here was another grunge night of haphazard sleep, ever present the distant choomp of the oxygen condenser and Segev's grating rasp as he inhaled, throwing himself about regularly with myoclonic seizures, I, repositioning and suctioning then thirty seconds after I fall back onto the bed  snuggling the bed cover he displaces the probe on his foot and waits as I try to jump back to my feet but only manage a staccato groan and slow rise. The ICU professor still maintains his extraordinary interest with an early morning call. Upsa daisy.

October 16, 2012

Comments welcome

Readership has dwindled according to the statistics page. The one constant is hits my original post on tracheostomy surgery gets every single day, because of the diagram. Most hits come from India, Sri Lanka and further east. But true readership has certainly declined. Comments, except for my die hard fans and friends (whom I greatly appreciate, more on that later) is non-existent.
This lack of comments saddens me. Not because I need an ego boost, not because I'm looking to pick a fight with someone but because of the very reason that I have friends who comment: I met them through blogging.

While I originally started in 2007, after telling myself for about seven years that there was no point to blogging, it wasn't until I discovered Claire's blog  Life with a severely disabled child that I said to myself, this is it, this is what needs to be done, to tell Segev's story, before it is over, before something happens to me and there is no one to tell it. He deserves it and it should act as both proclamation and inspiration. Again, not because of me writing it, surely it could be written better, more clearly and in organized fashion, but because he is simply such an amazing person.

I recently did a very 'facebooky' kind of thing and put out this picture on Segev's facebook page:

I did this because I realized that I had forgotten just how effin' amazing my son is. I could shout it out from the rooftops but being branded a lunatic seemed counterproductive so I settled for this happy median.

Back to the commentary on the blog: by commenting on other blogs, reactions occur, contact is made, other blogs and profiles are investigated out of an interest to find and connect to similar minded people. That is how I became friends with a small number of people, that because of my hermit lifestyle with Segev, is not possible outside of virtual reality. But don't be fooled into thinking, old school, that virtual reality is to be scoffed at. Except for my second ex, no one believes that anymore, do they?

But the majority of people who read a blog, any blog, don't leave a comment and there are as many reasons for this as there are people. Some are intimidated or simply prefer to keep their opinions to themselves, despite having the option to create a 'fake' identity and comment. Perhaps having a 'fake' identity is not appealing to some. Other might be reading your blog simply for quick entertainment value, moving on without truly connecting. Others feel at a loss to properly express themselves or find it too disturbing and energy consuming to jump in and be part of it. Some afraid to get carried away, say inappropriate things, not fully understand or perhaps disagree so much yet out of respect don't wish to start an argument.

Most bloggers exercise the right to filter responses. Some do it in order to weed out any anonymous remarks. Others feel that if it isn't positive, it shouldn't accompany their story. I feel that there is room for discourse but admit that there is a certain etiquette which I severely broached when I first started commenting elsewhere. I quickly came to understand that discussion had its limitations in the small rectangle where I could place my, often contrary, remarks. Respecting the blogger certainly meant not saying anything inflammatory, even if my intention was simply to express my consternation and try to open a dialog to gain understanding. Apparently it doesn't work that way in virtual reality, not yet and probably never will. This is that aspect where electronic mediums are simultaneously bringing people together, but also keeping them apart because communication over the internet is not the same as sitting down with someone in your home or a coffee shop. There is so much more persona present in cyberspace.

But still, I would encourage people to write comments because it can lead to some really good stuff happening in your lives. If you are content to stay silent so be it, this is not a dating sight after all. But it is a blog about Segev, my son, my thoughts and experiences living the life of extreme parenting and hoping to show some readers that, together with brutal reality there is undeniable and exquisite beauty to be found. Profound truths about our connections to others which define our humanity. Not because I say so, but surely because Segev shows that so clearly. And just as the 'motivational poster' above shows, we need to busy ourselves with open discussion of human beings caught in such unfortunate circumstances because so many seek and so few know that there is more to life than extreme sports, television and recreational drugs to relieve our perceived boredom. The tremendous advantage of sharing in life may not be readily visible, but it is there.

I want to sign off with this comment left on Segev's facebook page:

"He's a perfect person. One who gives much more than he takes. An innocent, having no malice or holding any grudges. One who loves unconditionally and completely. One who finds happiness by knowing you're there. It would be a privilege to know him. It's a pity more people don't."

October 15, 2012

A post actually about Segev

My son is in decline. No one appears to be worried about this, the days just go by. There may be some help coming though, to slow it all down and this post is about that. But first a summary of the last few weeks.

We have seen this...

Segev began needing twenty four hour oxygen supplementation early in July, which lasted for one month. We went into hospital for him to have the tracheotomy surgery but not one specialist was willing to commit to an opinion about the relevance of the diaphragm paralysis (which I recently found, though it has apparently been present for six years) vis a vis the impending surgery. While the paralysis explains a great deal of Segev's breathing difficulties, the best treatment offered was no treatment at all, which I am suspicious of due to the physicians categorically disagreeing with me that it may be responsible for many symptoms, including bouts of pain, bowel difficulties, heart rate fluctuations and the need for constantly venting his stomach air, which comes out under high pressure.

Because of the lack of clarity I opted not to proceed with the surgery and seek further information and opinions.

This brought me to a pediatric pulmonologist in Jerusalem who I saw six years ago with Segev. An attentive and very knowledgeable man who, had we lived closer to where he treats, would certainly have been Segev's go-to doctor. The trip was arduous because of the distance, my having a splitting headache and the need to try and continue Segev's measured routine of treatment, suctioning, feeding and medication while in transit. Segev cannot sit in his wheelchair during such a trip because it is only recently that he was approved for an electric lift, which brings with it proper securing for his chair, but the finances provided are not enough to cover all the costs. So he is relegated to a child's car seat for the duration of the trip which, I'm certain you can imagine, is not the place for a fourteen year old with massive kyphosis and scoliosis.

change to this...

The meeting went well although Segev was not physically examined this time. Apparently his condition, based on the chest x-ray was sufficiently obvious and we left with some useful recommendations and the stern opinion, echoing all previous specialists, that the surgery to 'tie down' the paralyzed diaphragm was a great risk for Segev without offering any discernible reward. Also we received an unexpected round of applause over what wonderful care Segev has obviously been provided with.
Later I booked an appointment with a neurosurgeon to discuss the condition of Segev's phrenic nerve, which is apparently the culprit in the paralysis, in hopes of discovering another avenue of treatment. One neuro surgeon could see me in four months time, the other one and a half months from now, so guess which one I took.

Early September Segev's breathing, after a relative lull in difficulties, took another turn for the worse, this time with an affluent amount of phlegm clogging his lungs. Segev's bronchiectasis, despite that radiologic evidence shows minor damage, produces unbelievable amounts of phlegm. Together with bronchodilaters, viscosity reducing agents, repeated physiotherapy sessions and an effective herbal strategy Segev often received as much as six liters of pure oxygen with little effect, his saturation hovering as low as 84% until manual compressions finally succeeded (often at three O' clock in the morning) in opening the blocked passage. 
In my experience the blockage that Segev experiences, which I first saw several years ago in rare, isolated incidents where his entire body would jump upward like a person possessed, heaving violently in an effort to get air into his lungs, is one which completely closes off his left lung. Therefore supplemental oxygen, not entering that lung, simply didn't help.
The number of hours spent applying mechanical ventilation nearly brought me to tears from sheer physical exertion. I knew that something had to be done and if I didn't find something he would have to be admitted to hospital and put on a ventilator. I'm certain some would argue that the time for that, from the description of the events, was already long overdue and I can offer no resistance to such an argument, yet keeping Segev off of a ventilator somehow prevailed.

and this...

An echocardiogram was one of the suggestions due to the enlarged pulmonary artery visible on the chest x-ray. There the result showed not only that Segev's heart has been pushed upwards and considerably towards the right by his protruding, paralyzed diaphragm, but also somewhat twisted it. The cardiologist believes Segev may be suffering from Wolf-Parkinson-White syndrome, encouraged by the knowledge that on occasions when Segev is unconscious, non-reactive for up to ten days at a time, he has periods that his heart rises to 150, 160 and even 170 beats per minute. Further investigation is needed in this regard and the pulmonary hypertension was confirmed by the ultrasound.

I sent a letter to the pulmonary doctor in Jerusalem after I encountered several technologies which appeared to me could be helpful such as the regular Bipap and Intrapulmonary percussive ventilation. The doctor replied but evaded the question. I persisted and he suggested I speak with the head of ICU who specializes in issues surrounding tracheotomies and assisted ventilation, especially weaning patients from ventilators. 
After sending a very brief description of Segev and my expressing my need for some kind of informative consultation he suggested he come to my house to see Segev and discuss the possibilities.
For a man with his responsibilities to come to meet Segev is quite extraordinary and when he was here he related to Segev in a very natural and comfortable manner. There was certainly also a degree of matter-of-factness to his approach but he balanced this with a gentleness that was apparent when he held Segev's hand and spoke to him. I can tell you, despite the beauty of Segev's eyes and his stellar smile, few have been able to so casually sit with him, so I was duly impressed.
The good doctor discussed what he believed to be the best chance of helping my son breath more efficiently, slowing the pulmonary hypertension and possibly even put off the tracheotomy for an extended period, which is called biphasic cuirass ventilation. It is one of the technologies I saw when I was researching options but payed little attention to. There followed a number of amazing stories of patients taken off of ventilators with this (and another) device, including terminal children with cystic fibrosis, waiting for lung transplant but unable while they still needed their trach. The device allowed its removal and ten children had life-extending lung transplants as a result.
I was further invited to visit the doctor in the ICU to see the devices at work, which I did last week. The process of acquiring one will take time, in part due to its cost (here $16,000) which will need to go through the health insurance who, I have no doubt, will fight it tooth and nail. Before that though a serious recommendation will be needed by the pulmonologist, presently abroad, who in turn will most likely need some solid evidence of Segev's need for the machine, including a trial run to see that it indeed can help him.

go back to this...

After fourteen and a half years in an all out effort to entice, encourage, ensconce, berate, enlist and intimidate physicians into having a caring attitude for Segev it has been overwhelming to see these efforts being made. As the saying goes, 'it's who you know', right?  

Presently Segev has some better periods where he requires oxygen only during the night or conversely only during the day. The Great Phlegm flood has subsided which of course is a major factor in the relative improvement. Ongoing adjustments to Segev's anti-epileptic medications (three of them) is slow, erratic and mostly guess work, as any parent to a child with catastrophic epilepsy can attest, but at present there are improvements there as well.

And for now, we have this...