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...

October 10, 2012

Bio-ethics man to the rescue!

The issue of assisted suicide is once again making the rounds, timely in Massachusetts where decisions need to be made, as my friend Phil blogged here. I read an article by a physician, here, who discusses his own ideas although he himself doesn't give the impression that he is involved in the issue in any way other than that his own mother passed at a very advanced age with, 'the best care available'.
My ideas on these issues took a long time to form from professionally treating terminally ill patients specifiaclly in order to relieve their discomfort, the treatment of disabled children as well as personal experience both with my mother who died from ALS and the daily care of my son who is extremely physically and mentally compromised and "medically fragile".

There are a few statements that Ronald W. Pies makes which trouble me because in my opinion they are exactly the kind of subtle hidden agenda-like statements which are pushing people in a specific direction, despite that the author proclaims in the last sentence,

             "I believe this is a discussion we urgently need to have."

First and foremost I believe that ideally individuals should have the right to decide their demise. The problem with this is that when you are stuck in a medical system, such as hospital or even hospice (end of life) home care, you are possibly not capable physically of helping yourself out the door and so must rely on other people to push you through. This will necessarily burden another individual and thus we have the discussions of whether and how physicians (or any other designated medical personnel) should adopt that role. Personally I have no doubt whatsoever that the debate is being smoothed over, fast tracked, if you will, so that we are getting close to the point of having "thanaticians", trained professionals that remove the practicalities of assisted dying from the hands of the physicians, who will then collectively breath a huge sigh of relief. 

But in the mean time the discussion continues as policy is being made. There are a few issues we need to deal with though before we can actually continue this dialectic, the outcome of which should necessarily not be known.

And isn't it interesting to find that one of the most central issues surrounding people's decision making, both of informed patient as well as physician, is completely absent in the discussion?
Near the end of his article the psychiatric physician gives this issue its significant due, with this sentence, 

               "Moreover, a careful psychiatric assessment of patients requesting physician- assisted death is always indicated, because major depression may distort the patient's judgment as death approaches."

Do you see anything troubling with this statement? I do because for one thing the complex and often physiological mechanism of depression is not understood, certainly not in the case of terminal illness. There is no science to stating that a terminally ill person is depressed, not even if you make a list of fairly vague symptoms that a certain percentage of people have and go down the checklist to see which are the ones they qualify for.
But more troubling is this part,

    "because major depression may distort the patient's judgment as death approaches"

It must be major depression, otherwise it will not influence a person's outlook? This seems to lack common sense. The wording of the sentence is of course as such to have plausible deniability later on. There is no commitment on the part of the author since, it "may" distort the patient's view. He didn't say it would, just that it might. Since when would major depression not distort a person's view, especially of self worth? Isn't that what helps us define 'major depression', that distorted view?
And yet in real life, to my knowledge, rarely are full psychiatric evaluations held, only when there may be clear cut signs of apathy or obvious dementia. Otherwise these gray areas of minor depression and mild cognitive regression are combed over in the direction of competency. Even more troubling will be if finally it is decided that apathy is a natural reaction to terminal illness and thus does not qualify for inclusion in the diagnosis of depression, therefore does not require treatment. Because just to be clear we are talking about treating depression in an individual who expresses the desire to die since the one thing that is clear, people are much more apt to feel up to dealing with their condition when they are not depressed. As an aside, the treatment setting for the terminally ill, how much love and respect they are shown, the quality of the medical aspect of care and how much work is done to keep those people active and interested in life, are monumental factors in this regard.

In the article the doctor discusses ways in which people can choose to end their lives, without requiring the assistance of a physician (other than treatment of discomfort and pain). The following statement had the hair rising on the back of my neck though, 

             "Contrary to a widespread belief, voluntary refusal of food and fluids does not result in an agonizing or painful death, according to a 2003 report in the New England Journal of Medicine." 

I'm happy for the good doctor that he can look to a single report in the NJEM to convince us all of something which he obviously has never witnessed personally. By witness personally I don't mean that he may not have been a consulting physician for a patient who was undergoing this way of dying. But to sit and care for and watch  a loved one literally wither away each day, even by the hour, is a horrible and disconcerting experience. Of course some will say, 'ahh you are speaking about watching a loved one so you are confusing your discomfort with that of the dying individual. After all they are properly protected against pain aren't they?'   Well no, in actual fact you will get to see a wide degree of discomfort and pain because adjusting to the person's medical needs for pain control takes time and there are actually pains which do not respond to medication unless you completely sedate the person but in fact you are then actively assisting suicide as opposed to a simple bystander dealing only with minimizing the fallout.
The sedation allows the process of dying to go on unfettered. Consider that whereas a person who is suffering without the help of being unconscious will not necessarily say, 'this is horrible, let's speed this up' but they might actually say, 'hey, this is horrible, give me some food or water, this is worse than what I was previously going through.' So in my eyes complete sedation creates a situation, despite the person expressing their agreement to this method of ending their lives when they were lucid and coherent, where their death is actually premature, even in their eyes, had they been conscious to realize it. Because if you choose this death, of abstaining from food and water, you may think you know what you are getting yourself into but really you cannot know what it feels like until the dying process actually begins, which by the way can take a very long time. Of course the answer to this is, that abstention is the method by which a person chooses to die and the palliation is an adjunct which allows the person to choose this method without suffering, which of course everyone wants. 

In the end complete sedation occurs, although normally losing consciousness is part of the physiological reaction to the abstention, as is the medically induced aspect. The area where one predominates is again rather gray, but of course many are not interested in these subtle nuances because they have decided to die. It seems to me to be relevant though because if the method chosen, particularly if it is done to not involve a physician directly, which is the point of the article The Ethical Dilemma of Physician-Assisted Suicide, as I said above, in fact will directly involve the administering person . So then why not simply choose for sedation immediately, the effect would be the same.
There is also the issue of informed decision, where anyone with an agenda, especially physicians can be the deciding factor.

Again I personally believe we will have "thanaticians" at some point and we will all be quite used to it by then, not even raising an eyebrow. After all, for many years already physicians have been directly assisting in the euthanization of severely disabled babies in Holland, quite legally and I don't hear anyone even discussing the issue, as though it carries no importance whatsoever, no controversy. To me that attitude epitomizes why the disabled are not accepted in society. It's broken so throw it away. Is that what you teach your children when a toy of theirs breaks? Alright, I can see something in that, although personally I prefer the old fashioned kind of toys, made of wood or metal which you can play with much longer and more often than not, fix when it breaks.

October 07, 2012

The question of inner life as force majeure

This is a repost from May, 2011. I have also added a paragraph originally not included.

   Can we take any of it with us? I can’t remember

So, the inner life, like a dream filled landscape will always resound richly of our efforts and understanding, but stark in contrast to what reality we can employ.

The question of inner life as force majeure for parents who naturally are confronted with their children’s incongruous state seems to me the crux of the issue. What we want for our children, naturally, is not to be disadvantaged. But they are ill equipped to challenge life in the way that we do. Instead life challenges them, sometimes in an absolute way, as a struggle for life itself.

Basic human rights have little foothold in basic societies possessing rudimentary and wholly inadequate means of supporting its population. Nature has all the answers, whether we like it or not. Nature is never right or wrong, nature does not philosophize. We strive to set ourselves apart from nature and the world we have built is the result.  All civilizations being based upon armed conflict, from the spread of Greek demokratia to the freedom of the industrial revolution, expansion and enforcement have preceded calm and understanding.

By this token of thought, the very struggle of parents of severely physically and mentally compromised children for a place of honorable standing, as a luxury of affluent society, does not stand a chance even as a velvet revolution. This is not to say that people by nature are not also compassionate, but the essence which drives the society successful in maintaining its population is a forward motion of growth. Growth, when impeded, prevents a smoothly running circuit of collaboration. Or thus is our perception.

Correspondence: to achieve an understanding of a person’s needs and attend them with the appropriate remedy

The inner life of a parent attending to the needs of a severely compromised child is necessarily richer than someone who does not because the difficulties encountered in that living are inexorably connected to the complex emotional quality of preserving one’s child, in contrast to what is accepted.

Thus the physical burden of caring for a child who cannot metamorphose into an independent, average person, being compounded by the emotional stress that protection carries.  This creates a kind of staccato psychology in the parent since they are isolated in their unusual concerns, truncated in their normal social interaction and finally for the most part, left alone to savour their difference from the mainstream.

We value individuals whom are able to redefine the boundaries of our human existence yet running the 100 meter dash ever faster doesn’t further our established dominance in the naturalistic need for survival. Fantastic feats of engineering need not be questioned, we do because we can.  Severely compromised children with physical and mental constraints also can. Of course if we want them to be judged not by their proprietary nature but by the same parameters as the majority is, then they simply can’t.

But this isn’t my new-ageism; as in ‘we are all unique, celebrate the differences.’  The Special Olympics are of note here where that event tries to take a very heterogeneous group of compromised individuals and equate their abilities according to time or distance as though they have the same starting point. Remember it still crowns a winner.
Just as we often give great deference to those that pass from life, bestowing upon them even the notion of immortality but fail to find how they are due honor and respect while living.  If I were interested in this inglorious immortality I would have given up on my son long ago. As it stands we are here, alive, to deal with the cause of living. And to my mind there is no reason to believe that a priori, one life is innately valuable while another is not.

It is clear to me that parents of compromised children will always carry that complex emotional burden that will not be understood by those without similar experience. These parents must jockey for position in a more and more regulated society, which paradoxically creates  more and more individualistic tendencies and outlets, making us less and less patient for those that cannot, or often in their eyes, will not, conform to the standard.

When a child is sick with a severe illness, especially those more readily acknowledged in public consciousness since they are shared with adults, there is a great deal of understanding, but the often inner struggles of a parent of a compromised child are in part inner, exactly because the difficulties are not understood, not accepted.

To the parents of "special needs" children, to the Fathers and Mothers who attend, in whatever capacity, to their children (whom we know to be not fragile but rather, supremely resilient) I would ask, how can we shift the attention, our attention, from the magnificent endeavors of formula one drivers, extreme athletes, film starts and a myriad other diversions towards a social consciousness of celebrating the tenacity, the difficulty, the simple beauty of this life, without the fear of being left behind?
Our main focus should be to establish a paradigm shift in the devolving sense of community, perpetrated by distraction. A sense of belonging which in past was taken, and in part we ourselves maintain as protective measure.

While I accept that pain and suffering and a shortened, severely limited life are part and parcel of my son’s existence, as an evolving species, developing our concepts of societal living, it is necessary to continue to define what quantity and quality of pain and suffering is necessary. Here closure, accepting death, is not the answer, the search for a better life is the answer.