December 30, 2010

At the drop of your hat in the bucket

ripple  by Noa Fischer


Last night was a little less of the same; Segev slept better but still not normally as he coughed and choked his way through the night. In the evening yesterday he had a large seizure requiring oxygen and after that faded into unconsciousness and I put him to bed. This morning as well, his uncoordinated breathing continued but his lungs have been sounding 'whistle' clean, despite the continuous phlegm being brought up. Then at 09.00 he suddenly became drowsy, his breathing more shallow and noisy, though better coordinated, his face red despite having no fever and he stopped reacting to any stimulus. 

The inhalation went well before nine and I was hopeful (testing fate once again) the bad case of vomiting earlier in the week would not lead to aspiration pneumonia. Wishes may be stars that shine down upon us, but apparently their function is limited to letting us know how many wishes there are. By 10 the deal was done.

So Segev is ill once again and I must work today with a sense of heaviness, despite having every right to being tired out from 48 hours of caring for him non-stop; I wish I could do more.

December 29, 2010

Day 4678 (including the night of 4677)

Segev is confused again. He is breathing when he should be coughing. Saliva and phlegm going into his lungs with some mild choking perpetuated throughout the night and now into the morning. I had to jump up out of bed well over  twenty times last night and now to continue new developments his left shoulder is dislocated. I turn him over to the opposite side usually only two times during the night but his left arm was cold, which happens usually when he has been lying not exactly right for a few hours. This time, despite turning him four times, when I finally got up to take him out of bed his arm was again cold. I started rotating and massaging his left arm as he lay sputtering noisily, half communicating and half gurgling and it immediately became apparent that his shoulder is not in place.


winter sky by Noa Fischer
Fortunately my daughter had not left for school yet so she was able to assist. I wasn't able to place it completely back, which I believe is a sign, just as happened with his right hip, that the subluxation is a result of slow permanent changes in the joint capsule. Repeated pressure over relatively long periods of time from not moving. In bed he can only lie on his side, he can't breath on his back because of the development of structural abnormalities due to his quadraplegia and sleeping on his stomach is inviting death by suffocation, even more so because of his seizures.

The good news is that it doesn't seem to bother Segev very much; it is sensitive when I apply pressure but that can be said of almost any part of his body. That kind of pain, by the way, always elicits a laugh from Segev, literally I mean.  His right hip makes a detestable sound when moving his leg outward as the femoral head pops out of place. Again, his reaction is certainly not one of tremendous discomfort and despite frequent physical treatment throughout the day, adjustments to position and changing locales (couch, wheelchair, lap) the persistent immobility does not  allow for the kind of dynamic correction that a cast or brace uses. The 'inconvenience' of trying to treat Segev, which requires a great deal of dexterity and bio-ergonomic know how as well as strength nearly completely precludes using orthopedic devices on him.

The only thing I feel I can do is to continue trying to keep his weight down which is so funny since he was dreadfully underweight for all his life except for the last year on the ketogenic diet and I was thrilled that finally he was filling out. 

December 28, 2010

If it's not raining why is it pouring?

Segev got to the surgeon yesterday but considering the dramatic interaction he has had with that man, the meeting hardly turned into a reunion of any sort. The bottom line is that for the problem of irritation that Segev suffers because his ribcage has expanded beyond the proportion normally allotted, there is no solution other than to have him in less of an upright position. If the irritation becomes severe then surgery will be discussed. Concerning the leakage from the hole in his stomach, around the PEG, I am to call the surgeon tomorrow and he will see if there is a larger size to be found; the manufacturer's website doesn't list such but he seems to feel there might be a channel open to him.

While making some squash and pumpkin soup, Segev next to me in his chair, recieving a bolus of food every twenty minutes or so, through the kitchen window I could see a car park in the driveway; I thought, wrong address or they want to know if they can do some landscaping in the garden, as I never get visitors.




Earlier today I was thinking, wow, I actually have a few bucks in my wallet and I'll probably be able to pay my utility bills on time this month. 
I'm still not sure of the legalese but the man either came to possess Segev's minivan or I was not allowed to drive anymore because of a two year old parking ticket. One that should never have been given since where I parked is explicitly allowed with a handicapped permit. I even spoke to the traffic clark minutes after he issued me the ticket. "You can't stand just anywhere, you know" was his response. This happens often here; tickets are issued for a variety of infractions that the officer knows is illegal but the system succeeds because of idiots like me who just let it slide. I'd have to take a day off and go to Tel Aviv to take care of it and every time I said to myself I should, but never did. I paid the fine,two hundred dollars  including costs and interest. "I'll write them a letter", I said to him as he left. "I don't care what you do", he answered back.




Ten minutes later, I heard a crash of broken glass and looked out into the yard from the balcony where I sat with Segev getting some fresh air. They are building a house next to me but I knew that they hadn't started installing windows yet.
My kitchen window, second floor, broke in half and the top part, fell out. Underneath that window is usually where Sanji, my 16 year old spaniel mix sleeps during the day, fortunately she was in the dog house at the bottom of the stairs.

I cut apart an old computer screen dust guard and glued it onto the window frame. If i was not the envy of the neighbours before, I certainly am now.

December 27, 2010

?

"inferno"

The night sky seemed to fervently fill with stars and I sit staring, fighting the evening chill, just a little longer as always, feeling connected to this display of plethora as though at peace with the universe, rather comical in light of my failures.

The failure to right the wrongs as they hold in fatherhood, over children brought with willing care into this world but missing the kind of certainty that was my fervent wish to provide. So sorry am I, so misconstrued I feel are my endeavors, that I am left with the hollow hope that they will be able to strike firmly an imprint worthy of emulation, with no less conviction than I envisioned for them.

How can I feel, after all these years of selfless caring for my destitute son, that he is now like an apparition I have been chasing. Trying to convince others of his existence that they should care as I do. Where is he if not only in my mind? Where can he be seen or heard, his laughter muted through walls, hidden no less than a stream of words that scream in my ears, only my ears.

I keep my hair neatly cropped for fear of appearing disheveled, controlling more so those things since all other control is awash in fear. How I long for that fine lather of contentment, not brought out of necessity but rather from a lack of necessity. Ahh, when we were children we dared to hope, we didn't forgive because in a split second the next moment had come to dowse us with new experiences and we were giddy.

I'd say we slept well and any aches were aches of growing. I wish that beautiful ache on my son, whose life is filled from an invisible cup, from which you nor I can ever taste.

December 23, 2010

Just some personal philosophy

The only words that I can think to put down, that might have some lasting meaning, that play along with this egotistical charade to posit Segev's story as myth in our collective unconscious are, 'I have been carrying this burden for so long now...'
But that would be a falsification of my belief that, while Segev may be unique and the struggle to attend to his being may be hard, it is not only one of my choosing, since we always have a choice (but may not agree with the consequences) but my load is no heavier than anyone else's.
I know I am guilty of a form of relativism, though I see it as a necessary intermediary step in the consciousness of society.

Claire has spoken about the difficulties in taking care of her daughter. Her daughter's care is something which has come to shape a great deal of Claire's life, just as it must necessarily do for any parent who decides (consciously or not) that their child's well being is of the highest priority.  She does have help in this care setting, with nurses coming to the home, though perhaps not always the ideal person but that form of help in principal exists. 

Therapists attempting to treat and of course a husband who loves his daughter very much. I mention this because one time she said to me, in repsonse to my feeling how difficult it is for her, especially having had a completely healthy daughter until age 6, that "it's not that hard".  This was perhaps less a false bravado nor even a resigned sigh of anguish, but rather a very grounded and healthy attitude that in the end allows her to be positive about the experience and garner strength for a long arduous journey. 

But Claire's journey is just as hard as mine, I honestly feel even more so. Here lies something important for me, in my relativism, which some might superficially dismiss as an inability to distinguish, which it is not. At any given moment we are made to bear (and bare in our attempt to get proper assistance) a great deal. Sometimes we say to ourselves, "not one thing more or I will explode!"

Until that one more thing is piled on, more correctly, absorbed into our built-in mechanism of degrading elements to fit the form of our psyche, removing elements which are impossible to digest. In other words we deal with certain elements, prioritize (not consciously) and end up seeing the problems we can understand.
Since we don't go through this process for others, we can see them and think, my goodness but theirs is the true hard life.

This is not what everyone perceives of course. Some are busy with their own issues and leave others to deal with theirs, so a relativistic approach is moot. I find I need it though, just as i occasionally need to remind myself that I'm actually doing a pretty good job because the relativism apparently has a tendency to attach itself way too much to certain emotional aspects of the psyche, sending it sliding into a particular area of discoloration.

The relativistic outlook lets me gain perspective that gives me strength. Without it I might get lost in viewing my situation as untenuable, and certainly I have been pulled in that direction by some very powerful forces. 
Make no mistake, the need to attend to Segev is such a powerful force that, though difficult to understand, can actually result in a great deal of negativity. 

There is a need to balance other elements of life, other elements that will necessarily pull you away from that taunting bright light that has entered through every pore. But it is a bright light for a reason; its own reason, it is simply being what it is.


December 21, 2010

Diversity, not lacking



Segev has begun to suffer from a new seizure since about ten days ago. I would classify this as a medium strength seizure because of its length. It is a whole body tonic seizure with intermittent forced exhalations. With so many factors of influence and the dosage of three anti epileptic drugs to consider, as well the ketogenic diet, it is doubtful i will be able to make much sense of this new seizure and thus influence it. 
Over the last two months I have been trying to lower his body weight because quite simply, Segev was getting quite rotund. Not good at all for him and of course more difficult for me as well. For most kids the ketogenic diet actually functions as a natural growth attenuator; both weight and size are subnormal. Segev of course, requires being different. I decrease his caloric intake but he has actually gained two kilograms which points to the fact that he has grown. Still his clothes are less of a snug fit and as you can see in the photo's he looks good so I will keep this course steady.

Segev continues to mend from the exacerbation of the bronchiectasis which dove-tailed into the virus du jour which leads me to the following:

Something unique happened last night that occurred on one other occasion in the last eight years.

©2010 Noa Fischer


Last night, after I had successfully given Segev his evening meal through the PEG while he slept (never ideal, never a choice) and just before I was to put him to bed he began seizing. This was one of those trainwreck events; not only did he turn blue and threaten to bite off the end of his tongue but finally, finally when his body sank back into exhaustion, sputum spraying from his mouth, his legs decided to do an additional Vitus dance, gaining in strength until I literally felt fear well up inside me.

This may make the remarkable thing which happened last night appear rather logical to many. Now we must factor in that since I have been suffering from the dreaded cold/flu virus which seems to have claimed every single host on the planet already, leaving me for last. With an average body temperature of 35.5 C (I am part-reptilian) these are long drawn out affairs with me. And so after two nights in a row of not sleeping, maintaining my work schedule from lack of choice and while beginning my first 48 hour tenure of the week with Segev, last night between 01.00 and 07.00 I did not rise even one time to tend to him.

As I said there was only one other time this occurred. It's not even that I slept through the night, I have a chronic orthopedic problem which is a shoulder-neck-upper back trinity that causes enough pain to wake me. The roentgen image speaks volumes. But Segev, unusually dormant, rocked by his seizure, took the time to recover.

I see silver linings in the clouds and so it may seem that the rest did all of us good. It did. The problem resides with the fact that Segev, with not only no conscious control of his body per se, also possesses no structural body tone, the epitomy of the rag doll, so that his chest wall is also completely relaxed, severely diminishing his ability to breath and maintain the percussive effect of tonus allowing mucus to be brought up. 
In short the accumulation of phlegm in Segev's lungs when he lies for so many hours is bad, quite bad and the morning is spent with extra long inhalation of medicinal substances and physiotherapy that requires simultaneously holding, supporting and treating Segev's heavy rag-doll of a body, all under a certain time constraint for his regular medications and ketogenic meal, which is prepared each time anew by me.

It is  this intense accumulation of problems and logistic details that make his treatment so complicated. At the same time there remains all other elements to address: his stertorous breathing, the reddened skin, to the point of bleeding on occasion, surrounding his PEG, the cold legs and misaligned ribs, the perpetually dry lips and the abdominal pains from heavily scarred and neurologically impaired intestines and so on and so forth.  

These last days, as much as I've been able to perceive through the haze of my own acute illness, has been on par: Segev fading in and out of consciousness. Complaining alternated by happiness, sleep alternated by sleep seizures, coughing alternated by more coughing and suctioning until finishing machine after machine.  

Christmas is fast approaching for those that celebrate it. I actually considered the option of downplaying the event to the point of canceling since this period is so fraught with problems both of health with Segev and my mother as well as financial difficulties. 
She is still not released from hospital due to severe pain and a certain, shall we say lack of fluent communication makes it impossible for me to help her. It being just myself and my three children, I felt even more that they may not be able to enjoy a moment of lightness having grumpy me as their Dad. But I realize that they are the three most important elements in my life and I want, no need, to share some good things with them and show that despite adversity we can still have a good time. 

I rely heavily on my eldest for this as laughter is always guaranteed. His sense of humor ranges from the sublime to the infantile:  Big Daddy Autism, as a connoisseur of potty humor gets the laughs but when your almost eighteen year old regularly and urgently announces his impending bowel movement with such descriptions as "I'm about to engage in 'shock and awe'", "I need some quality time", "the steamer calls me" or "don't go in there, ground zero" the mood is never heavy (no pun intended) for too long.


I've put my sincere wishes for this time of year for all to see on the page to the left. Originally my reaction to Bennie Waddel's post, is certainly what I feel towards many who have shown support as recent blog friends.  

December 17, 2010

Heartbreak Hotel

 If any of you feel that your heart is breaking, let me tell you something; it will heal in time before the next opportunity arises.

Today Segev is not with me so besides three telephone conversations, one to my son, one to my daughter and one to Segev's mother inquiring as to his status, I went to see him at his mother's. The sun was out and he was on the porch, sitting in his old wheelchair, the one I recently renovated.
He didn't react to me. I asked how long he's been like that, my mind racing, 'blood pressure? blood sugar? ketosis? cold?'. I checked his legs all the while talking to Segev in an effort to get a reaction, they were snug and warm with a hot water bottle.
"He was fine until a moment ago".  I didn't like the answer but I know why. I know my mother is recovering from her g-tube placement yesterday and the physician postponed her release because of severe pain she is experiencing.

Segev wouldn't respond and i simply felt my heart breaking. Bad timing.


After a few minutes I decided to call it quits and looked forward to tomorrow when he is back with me, promising myself that he won't get off so lightly then.

this is what I want

December 16, 2010

Scenes of compassion: 4665







There is a law. I did not dream up this law, merely point out its existence. Some of you have felt this law imposed upon you and suffered for it. The consequences of this law are directly and inversely related in proportion to your full-out desire to oppose this law.
The law is:

When the tide turns toward the light, even for just a moment in time, a shadow falls.


photo by Noa Fischer
  

Segev had trouble breathing yesterday but we enjoyed each others' company. He smiled hugely when i precipitated a "scratch attack" on his arms and shoulders and back. He didn't vocalize but his awareness was acute and his obvious reaction of happiness was matched in intensity only by the severity of the two massive seizures he had in the evening, necessitating complete sedation.

December 15, 2010

Day 4664

Day 4664

Is that really Segev? The boy who continues to defy the odds, struggling daily not to succumb to his myriad medical problems? Who is still acutely ill but on the mend, still having quite a lot of trouble breathing today?
Yes, yes it is.

Today I extrapolated some data from the Yahoo Ohtahara group project to consolidate geographical placement of children sick with this syndrome, like Segev: average life-span is 15 months. 

December 14, 2010

Day 4663




I've been going into the past a great deal lately. I think it may have something to do with my mother's condition but also this long hard journey with Segev. I find myself thinking about experiences I had as a child but also a lot about the beginnings with Segev. When I started corresponding with families around the world, reaching out through support groups and forums and the facebook pages it was clearly because I knew how lost I was then, despite my medical training, no one offering the slightest inkling of help or advice, what to look out for, how to deal with certain practical issues. 

I had to not only learn quickly the medical aspects to investigate as well as treat certain conditions, but because no physician out of dozens could offer more than a shrug I was required to know more  than what the professionals knew and I guarantee you that in many specific areas of study, I succeeded. Not everyone can do that so I felt compelled to try and share some knowledge, succeeding somewhat. Giving free consultations, as it were, since I have little else to do in between the moments of caring for Segev and believe also that after Segev extremely disabled children is where my calling lies.

I have to wonder just how long can Segev last.  I have to live each day as it comes. It isn't possible to plan ahead when even treatments or diagnostic appointments routinely get canceled because Segev isn't up to it. We never go out anymore. Too much equipment to prepare, bring, coordinate, attending to Segev too complicated to do properly out of the home.

Every thing changes with Segev all the time. His environment is stable. His body changes; his chest expanding forward, his hunchback backward causing his breathing to become less and less efficient, more laboured. He has an exacerbation of his bronchiectasis each week now. He vomits frequently, aspirating some, adding to the cycle.

Segev's bowels are always in trouble, in danger of becoming obstructed once again. Work to move his bowels by pressing and massaging his abdomen is not a daily thing; it is an hourly thing.

The number of times Segev gets chest physiotherapy depends on how filled up his lungs are. On good days, with no fixed schedule for each session, they number about five times in a day. On bad days you don't keep count.

It's winter now and since Segev doesn't move; his poor circulation lets his feet and lower legs become icy cold. Keeping them warm is a 24 hour occupation.

Segev continues to have about one hundred seizures a day, despite the three medications and ketogenic diet. I try to rotate out medications, gradually reducing the dosage in order to see if a particular drug is still effective after so many years, having eliminated others altogether. Any reduction sees his seizures increase in frequency and severity. One of the drugs even increases his small seizures, but my concern is naturally for the big ones. The ones that come along like a freight train and take.him.out.

I even went so far as to have the VNS machine implanted despite a very slim possibility for success and now it sits their in his body a cold useless piece of circuitry.  You can't even take it out because the wiring is wrapped around the vagal nerve in the neck and fibrosis won't allow a clean, injury free removal.

You might think all of this is a routine for me by now and here and there I've certainly mentioned these difficulties before. But there is no routine when you can see how coordination suffers in the morning, demanding even more of you. When you forget things and there are time when you find it difficult to focus even on the task at hand. It's like one of those plate spinners who has to run around from pole to pole keeping the plates spinning lest one fall and break.

Segev is ill, so are we all but it certainly has wrung something out of me to keep his treatment up to par. My other two children are Segev's assistant caretakers and they have had to shoulder a little more of the load lately since I decided I can no longer be entirely alone with Segev for two days at a stretch. They know that if they want to go out it depends on how Segev feels. This has always been a shadow over family life but it actually has only started to become the de facto rule recently, since I feel my strength becoming less. 
Early next summer my oldest has to go into the army for three years. I can't possibly think that far ahead but perhaps I need to force myself to do it. It seems that the more decrepit Segev becomes, the more I cling to him and all the more I can feel some other reality beating at the door. How many other responsibilities am I letting slide? I even thought I should devote more time to try and stabilize the financial situation, at the cost of Segev's health since the bigger picture can bring our health down as well. There was a time when I could have shifted my focus but now I no longer even see a way how.

Things appear to be getting more and more complicated and I ask myself how much am I contributing to it? 





December 12, 2010

My mother is not well



For over a year now my mother, whom everyone affectionately calls 'Hansje', has lost the ability to speak because of ALS. We rarely communicate because of her condition and as she lives in Holland. This afternoon I received this message which I am sharing here now, as well as my response.

Dearest Eric  I love you and also in another life my spirit shall be
with you.

Just the facts; i am running backwards in a fast tempo and next week 
get the surgery to place the (G-tube), but as things are going as they go now there
is not much hope anymore. 

 i cannot walk behind the rollator and my strength is totally
gone. 

it is all too much for Dad he cannot cope with it really and he is trying.

My nerves and muscles are just broken and can only lay down in the 
special chair i have.

Eric do not think about it please, what will happen happens.

All my love Mom



My response:

I can remember all the times I thought, why is she behaving so awkwardly, being spontaneous, offering advice, listening to strangers tell her their stories? Why does she laugh when she gets lost? Why does she speak before she thinks? Why does she have all these 'wise sayings' that she tells people and their reaction is to be taken aback? Why does she act out with her hands what she is already explaining with words? 

But I understand now that the reason you did these things is because you are Hansje. Someone who has always embraced life and shared freely everything that you had, be it personal possessions or knowledge and above all kindness. People sometimes looked at you strangely because they did not know that what you were telling them was not for them at that moment, but for who they would be later, when your words came back to them and they could understand the depth of your intuitive wisdom.

Your hands moved while you spoke because every word you spoke was true to your heart and beliefs and when it wells up from the source it simply requires that extra emphasis of physicality. Just like your legendary hugs.

Hang in there mom and I wish I could be there for the surgery but you know my responsibility to preserve Segev's wellbeing prevents me from doing so.
Love,
Eric

December 08, 2010

Missing: everything

photograph by candymax

Despite its length this writing doesn't live up to what I had hoped to achieve but given my time constraints, it will have to do for now. 


When you exaggerate people will miss the levity you are trying to convey. But there is one thing I certainly know to be fact after nearly thirteen years of fighting to keep Segev alive: you cannot understand how great the emptiness is, the magnitude and complexity of what was taken and how apparently, to the untrained eye, Segev has nothing yet that nothing obliterates that void.

Sounds like a rather emotional statement to me, perhaps bordering on the bellicose. So let's run through it together shall we? And this is done, not to garner sympathy, not for me or for Segev (the donate button is at the top right of the page) but to gain understanding. Why do we need to understand better how significantly challenged Segev is?

Because there are discussions going out there about rights of disabled children; human rights, rights to benefits, rights to live, even rights to die, and decisions are being made about what is right and what is wrong for children like Segev and less severe cases and we may find ourselves in a position to discuss or even influence opinions so naturally we must be "informed".
And because either Segev has a right to life with dignity or he doesn't. If he does then we have to understand the depth of his problems. Remember no one is asking to fix what can't be fixed, but the truth is that when we save a little bird from imminent death we will protect it, nurture it until it is capable of taking care of itself, while there are those that might euthanize the bird if it can't be made independent.  Of course people like Latimer choose to euthanize their child, while also refusing treatment that could help make the child more independent (all within context of that child's disabilities) and indeed taking care of Segev is quite a bit more demanding than taking care of an injured little bird that has lost it's way.

Again I stress, whatever your reaction may be to a "Latimer", mine is to fight for Segev until I see that he no longer wants to or can and I have been at that precipice so many times, having to decide if to intervene and help Segev to stay with us that surely this puts to shame those same Dutch doctors who euthanize babies with pride because they are certain that nothing good can come of that child's life.  In my opinion parents who are either influenced into such a decision or take it with the thought of the inconvenience a life with a severely disabled child will bring, are like hit and run drivers who, driving at night strike something, see the flash of limbs flailing in the rearview mirror and continue driving "hoping" it's not what they think it is.

This thinking and feeling of mine is a kind of "it was meant to be" philosophy, without the need of religous overtones to assuage confusion as to why this happened. Either life has meaning or it doesn't. When deciding life and death it is black and white by definition.

If life has meaning then to take it must be an act of self preservation. I think some people might want to look at Segev as a human being and reevaluate how they define self preservation.  And so that you know, of all the times that I had to decide to fight to preserve Segev's life, sometimes literally beating the life back into him with cardio-pulmonary resuscitation, there was a time when I held Segev, his breathing having slowed, stertorous, unconscious yet seizing, a long hard dark time when my strength was ebbing. My resolve to do everything and anything did not waiver but the decision whether to call ambulance and rush him to the hospital needed to be made. I knew that his situation was so grave that either he was going to make it on his own now or die on the way to the hospital and I decided would prefer he die in my arms. But he did make it. He clung to life, some will say by chance, certainly chance will play its part in life and in death. But that one time that I did let Segev's being decide, the balance of the scales tipped toward life. You have been measured, you have been weighed and you have been found.

The most important issue here for me is that I am constantly searching for certainty that I am treating Segev with dignity. That I am not encroaching on him my wishes and that this is making him suffer. His suffering is massive, there is no doubt. How much of that suffering does he comprehend? This is a central consideration in all the issues of discussion I listed above. Normally we resolve this through communication

How is that working out for you

Segev doesn't blink but he will lower and raise his eyelid occasionally as a response to a question. As regular readers will know for years Segev smacked his lips together when he was asked if he was hungry (and indeed enough time had elapsed since his last meal) but stopped a few years after he no longer received food through his mouth.  Because he reacts often enough to the question of being hungry in a specific manner and never responds to another question in that fashion I know that he understands it.

If I ask him if he wants a bath, he will blink, assuming of course that his level of consciousness is dialed up to ten instead of the usual 2-5. At setting ten he makes noises, tells stories and may even stiffen his arms for up to twenty seconds out of excitement. At setting ten he smiles almost every time you touch him, move him, talk to him.

Often he rapidly sinks into what appears to be a number two setting but if you do speak to him and hold his hand his eyes will rocket open and his body will curve, often into a twisted morning-like stretch, and this electrical reaction is nothing short of uplifting each and every time.

When Segev is "dialed in" a session of strategic scratching, of his arms or knees and especially back, is met with delight. He can be slumped, with a sour expression, no longer reacting happily to touch or talk but then I have taken him in my arms and using the sum of twenty years of intuitively applying manual techniques to people's bodies, manipulate Segev's back and ribs in a convoluted, circus-attrraction-like position and that glum, pained expression has been replaced by light.

Why is this relevant, besides the joy of sharing experiences of Segev with you all?  It's relevant because I have been treating disabled adults and children for a long time and with Segev being my son, closely scrutinized, weighed and measured, I have come to the conclusion that there are many times when there is the appearance of no communication or understanding, the actual presence of a physical state where there is no communication, but that may respond to the right stimulus and interpretation.

Therefore in all discussions of method and treatment, both in rehabilitative terms and in defining cognizance, there is still room for searching and learning, exploring. Bio-ethics is necessarily as embryonic as bio-technology and the discussion of euthanasia or growth attenuation is not done. 

Some will say, "what a moot point, he is already here to stay, let's move on." Just because Segev got his ticket stamped for this ride doesn't mean others will be as lucky. He is here to stay and moving right along means looking at what his needs are so that he can continue to live out his life with as much dignity as you can fit into a well-observed, well-considered, properly mitigated, true-to-life lowering and raising of an eye lid.



December 05, 2010

This morning's Dream *warning* graphic content of a disturbing nature

The cobblestone city street is broken up where it meets the curb. There is a narrow grave dug there, clean cut sides, a storm drain at the head of the grave, imbedded in the sidewalk. 

A woman  dressed warmly against the cold approaches, kneels down  while people pass by on the sidewalk and roughly tosses the microcephalic, tiny body of her daughter into the grave. The body strikes something protruding from the side farthest from the sidewalk making a thumping noise. The woman jumps into the grave, holding under her arm giant stalks of fresh cut asparagus, to serve as bedding, covering and to help preserve her daughter's body. While alive she doted and cared for her daughter whom she loved dearly.

Suddenly a man reaches into the six foot deep grave and takes out the little girl. He is a massive man, heavily bearded, grey disheveled hair, a man without a home.

"Now, now" he says, holding the tiny body in his massive hand bringing her up to his lips and kissing her forehead. The mother is visibly shaken, she seems to come out of a trance like state and then the old man begins to speak, saying what she wanted to say, to explain to him.

"Oh my", he begins. "No one accepted this child when she was alive". It doesn't matter, she thinks, she is meaningless dead. The man looks at the giant stalks of asparagus.
"Look" he says, pointing at the girls side, raising her shirt slightly to show a red abrasion where the body struck the jutting object.  Her body is still pink, I am thinking in the dream.
The old man has a tear in the corner of his left eye but he doesn't wipe it. The woman is upset, fidgeting nervously.
"It's nothing" says the mother.
"But look!" says the man, prodding the area, now a slight bruise. "Something must be done about this. Poor creature."

Segev's staccato breathing woke me up and I jumped from bed to start suctioning and clapping on his back. 

December 02, 2010

Excellence, compromise, achievement




Society appreciates the best. The best in everything, we strive toward it, it motivates us and makes us feel good when we see success, betterment, advancement, stronger. The champions make it look attainable, you too can do it, or at least try. True dominance, be it in the sciences, Niels Bohr, Einstein, the arts or sports, business or spirituality is lauded, quite justly.  

We are advancing as a species, we excel in dominating this hostile environment, imposing our will, advancing even our instincts to self preserve to the point where arts have formed to exercise our martial tendencies.

So it seems only natural that people who are capable of less are less regarded. Severely disabled people of course, can no longer be looked down upon so we pity them, excluding them from the competition.  
Last year there was a mixed martial arts competition where a natural quad-amputee participated in a sanctioned fight against a regular fighter.  A gross mismatch since it was not possible to gauge the amputee's abilities according to average standards. What exactly he was hoping to prove, I'm not certain. No one can question that he has heart, though.

Society appreciates the best because it helps us to continue to strive to move forward, in technology look what we have accomplished in a mere one hundred years. Astounding. Incomprehensible, and someone who says otherwise, that it was all quite expected is a delusional idiot since the only ones describing these quantum leaps in technology were science fiction writers who were as highly regarded in the academic world then as comic books are today.

Have we made quantum leaps socially as well? Obviously not. We drop the atomic bomb, annihilating over a hundred thousand souls and our moral refinement justifies it as though aggression, in a fight fire with fire attitude, will end when we crush it forcefully. History proves this thinking to be incorrect. We cannot broker our own survival instinct.

But there are those that are certain the next big invention is just around the corner. Some technology or bio-technology will appear that will finally put our fears to rest and help bring true order to human existence, a calm which religion has not brought. We want to get rid of the divisive nature of man, to unify him, through some kind of technological wonder since we are in the technological age. We had a philosophical age, and waged wars based on them. Religious age, the age of enlightenment which saw us conquer the "savages" of the world, in the process reaching new heights of savagery.

So, now technology will save us. No, I don't think so. While I recognize the inevitability of our forward momentum, carrying us to the stars for example, though tempered by the fact that our own oceans are probably 99% unknown and we destroy vast areas of land without knowing its true value, we will move forward, it's in our nature.

But nothing will come along to place order, to save us from ourselves, but ourselves. The only order that can come is that from within.

So while assistive technology will help create more and more equal ground for disabled people, (who knows even for extremely disabled children like my son,) but if we put our collective conscious into that basket then when, oh when, will we concentrate on the true issue of creating a place of dignity for someone who was, through no fault of their own, born with extreme disabilities, even to the extent that they are without the ability to live for more than a short time?

A house divided against itself cannot stand. Polarization is the only result.  Those who seek only strength inevitably decline. In body building, if you don't work to strengthen the synergistic muscles, those smaller supportive muscles, you can never build a strong enough base and injury is inevitable, often debilitating. We've learned a great deal about how the physical body works, excepting the brain, here too advancing tremendously as shown in sporting competition. About our psyches we know very little.

Society can become massively strong, as throughout history empires have risen and fallen, power shifting and change resulting in strengthening. Always there have been sacrifices, those sacrificed. I have no doubt that at this stage, our children are being sacrificed.

The Hastings report on the ethical committee's compromise in Seattle, Washington concerning growth attenuation for extremely disabled children does not give me much hope. Not because the consensus did not come out how I personally would have preferred, but because when you want to establish ethical guidelines the intent is to describe to society what is average and thus normal.  While medical viewpoints are well represented on such panels, parents of extremely disabled children are not and the selective approach of addressing growth attenuation only helps de facto, to define roles for extremely disabled children in society by setting the tone.

Now probably no one will argue with me that it wouldn't be appropriate for representatives of healthcare insurance companies to be invited to the panel for discussion, after all, we can all rather cynically state that insurance companies have financial interests as their first priority and that ethical policy should be concocted without the muddying influence of financial consideration.  As  a matter of fact the case can be made that they would be biased for such extreme measures as an "Ashley X  treatment" since it could theoretically prevent future expenses in the care of the child.

But if we are to be honest with ourselves, financial aspects definitely dictate treatment in the real world. Better care definitely requires government and insurance companies to deal out more,  even in the search for inventive treatment strategies.
But they do in the real world dictate for the most part what is available and so my conclusion is that they should be required in the panels and committee's charged with defining operating policy in regards to growth attenuation since the most basic question of human rights can be addressed there where, as a test case, the possibility for infraction, if not already fait accompli, at least lies in potential. 


November 25, 2010

Change








The old adage is, 'you are never too old to learn'. Meaning not, you are never too old to learn but rather there will always be something to learn no matter how old and wise you get. As we age learning new things becomes more difficult because of our less smoothly functioning brain as well as our mentality - they go hand in hand to some extent.
It should be, 'we are never too old to change'  since true learning effects a change within us.  

My grandfather was an amazing man for his intellect and breadth of knowledge. One day, around the age of 16, when visiting him as I oft did, he told me to come with him down to the little basement that served both as pantry and photographic darkroom. I'd been down there innumerable times, hunting for goodies, bringing up supplies for the evening meal and had always seen the trays for developing, the jars filled with developer and stop and of course the enlarger.  Having started to photograph at age four and sharing a darkroom since age 15 with a neighbour, it was all quite familiar, which he knew. And yet he took me on a tour of one and a half hours, of this little room just big enough to fit a car in, narrating the place and workings of each and every element with excruciating detail, as he was always wont to do with everything, until finally exasperated I asked him, "but why are you telling me all this?"
His heavily wrinkled forehead seemed to rise up several inches as he raised his eyebrows in wonderment. Then he said, "because all of this will be yours one day, youngster!" That's how he called his grandchildren, 'youngster'.

I couldn't comprehend at the time why he would be talking to me about this; was he going to die soon? He had told me, just prior to settling into the frustration of pension at 65, that "72. Yes, 72."
"What's that Opa?" I asked.
"72, that's a good age to go. No need for more than that."  I paid it no heed but then, three years after my tour of the basement, at age 72, he died. 

The thought of him transferring his possessions to me was crudely foreign because I had come to see my grandparent's little wooden house, amongst the dunes near the sea, creaking at night with the rough winter winds of Holland, was not just their house or a part of my childhood, it was my childhood.  Something which, since having started from age five moving to different countries, uprooted just as we were settled in, must stay immobile, immovable, unchangeable.

Can you imagine how i felt when my father, years later was forced to sell the little house, still in perfect condition, its wooden frame having withstood the brunt of seaside weather and Dutch storms for over fifty years? 

I inherited from my grandfather a problem with digesting bread. He was diagnosed with peptal ulcer and as a result would mostly eat white bread sandwiches with the crust removed and white rice. This, he felt, together with antacids, was  the best possible treatment and only the plain white bread, wholly devoid of any nutritional value would not upset his stomach too severely.  

I contemplated many times using my grandfather's method but, being somewhat a 'golden ageist' and later Naturopath, I stuck to my organic millet and rice bread, whole grain everything and kept on eating bread with a passion.  But it wasn't working and all the signs of my grandfather's affliction manifested themselves. This wouldn't do and I had to go beyond, not only my grandfather's way of thinking, which was static despite its wonderful breadth, and beyond my convictions, to find the change that would allow me to continue eating wonderful bread.  

Finally I found sourdough bread, like foccaccia and other whole grain variations that, because of the natural fermentation give my stomach quiet and allow me to fulfill my breadly desires.  I wish I could have shared this with my grandfather, although being so stubborn he probably would have brushed it off. I'm certain a lot of things could have gone differently for him, being so well read, with much unique experience in his life, if he had been more open to change. 

His lack of change stands as a stark reflection for me. Constantly i ask myself, "is this happening because I am unable to see the change necessary to get out of it?"  It defines my approach to Segev where I, at least once a year, completely erase my knowledge of him and start afresh, studying, asking questions, meeting physicians, looking for something I missed, overlooked and hadn't thought about previously because I was stuck in a certain way of thinking. Sometimes perhaps even being afraid of changing what appeared to work. 

Certainly not even one time have I failed to discover something new and it's about that time again, to jump into that new perspective, since without that little change at the right moment, we might get stuck forever, attached to things of the past simply because it's comfortable.

I'd like to be able to say, 'gosh I miss that house!', but it is inside of me, transformed into an additional force looking for, of all things, something new. 

November 23, 2010

A morning like this

On a morning like this, some might say that coffee is your best friend. On a morning like this, coffee is actually my only friend. Breakfast is aspirin. But still I smile as I hold Segev on my lap after picking him, stiff as a board, from his bed and sit for a moment to catch my breath before making the trek to the dining room where his chair awaits.

I smile because it makes me happy to be able to hold him even for a few seconds of normalcy, without screams, without him being in pain, reacting cheerfully (Segev), stretching his powerful little body and me struggling to hold on to him.
It just struck me only now how strange that is, that he has no conscious control over his body (except sticking out his tongue on occasion and that rare but overpowering smile), lacking any of the proper reflexes and yet he stretches himself, mind you with his arms by his side, but still.

I will raise his arms above his head and say to Segev, "stretch!" and if the time is right he will stretch, smiling, always smiling. But this morning, though it may have been a "stretch!" moment, I didn't simply because I couldn't. On mornings like these, when you have had a very tiring day before and an entire night with only a few fleeting moments of sleep, up to thirty minutes worth at a time, it's best not to tempt further the damage lurking in your body, waiting to spring forth.

On a morning like this one I still have to take care of Segev, alone in the house, prepare his ketogenic meal, his medications, his inhalation therapy that holds no less than five ingredients, all within a restricted time schedule. Don't forget anything Eric, no, don't put Segev's mug with his food in the refrigerator, you heat it up in the microwave.

The fact is that on a morning such as this, when what has kept me from sleeping is not only the regular routine of Segev not breathing due to a mucus plug in his bronchials, the physiotherapy at 3am, turning him over, massaging his stomach, letting air out through his g-tube, changing his diaper or suctioning him. If that were the case I would have been able to hold out for a night of luxurious one hour stretches of sleep, congregating to my beloved five and a half hours total. But last night was a night usually reserved for the three days that Segev is not with me; the nights when my sleeping pattern is the same due to my nefarious enemy that sees me go to bed as late as possible, out of fear. 

Fear of pain. Constant inflammation in both my neck and shoulders. Yes, both shoulders so that the choice is not between sleeping on the good side only and then losing circulation but at least being off of the painful side, both shoulders so that the choice is simply, which one hurts less. Right now I can barely lift a pillow with my left hand (I'm left handed) because of the pain. Anti inflammatory drugs exist. I've taken them. Again and again. Natural medicines are my forte so they have been used as well, repeatedly. Rest has been tried, that is to say, no weightlifting (which I need for my back in order to lift up Segev so many times a day) for a period, all to no avail. The simple matter of not being able to completely and utterly allow the area to rest means that for many years now I have exacerbations like this last week, culminating in last night and this morning, where only technique allowed me to pick Segev up out of his bed and caused me to linger a little longer on the edge of my bed, gathering courage, honestly, to move rapidly down the long narrow corridor, Segev's arms flailing dangerously, to put him in his chair. 

When you suffer repeated pain in this fashion, the fact that it is bearable pain is kind of negated by the emotional charge that has accumulated from it being a constant nuisance. In other words it is very frustrating. Others aches I have found a way to deal with, my loose ACL for example, which necessitates wearing support bandage if I want to be able to carry Segev up or down the stairs is under control since the necessary surgery would put me out of commission, which of course I cannot allow.

The last time I went to an orthopedic physician because nothing was helping and I simply could not fall asleep for two days from the pain, could not lift or even hold Segev anymore, he said to me two, apparently contradictory things, "you probably caught cold, take some aspirin", and, "you have the neck of someone at least twenty years older."  So it's not always easy to get those dreaded medications, so strong that they can do as much harm as good. But you know that when you reach your limit, you grasp at straws. Not so good to have to take care of yourself all the time. 

That's what PartnerX told me when she left to move abroad, "take care of yourself, Eric". Oh, OK, good thinking, I'll do that.

So on mornings like this what else is there to do but whine and complain on my blog? There is only coffee and aspirin (and omega complex and arnica and ruta, yes yes) and Segev of course. He's doing alright by the way, average let's say. Over his lung exacerbation this week, breathing is rough but stable, bowels are problematic, troublesome and painful but not hysterically so and he's only vomited once in the last week (at his mothers).

As long as I can stop myself from putting the Coffee in the refrigerator to heat it up, this Morning might actually pass into an Afternoon instead of dragging on to the Night. An Afternoon is of course different in every respect from a Morning like this. An Afternoon means things will be calm and I may actually get to take a Nap, which is so rare that I have to capitalize it. One can only hope that this change will occur. 

Yes, I just used the word hope, since when all rational thought has left, hope fills its place with whispers of magic, flirting with your conscious mind like a will 'O the wisp, taunting. A Nap.

November 20, 2010

Excerpt

Segev is sitting in his chair. There is no need for supplemental oxygen even though his breathing is rough today. A kind of staccato blanket of sound, rasping and choked, coarsely allowing air to enter his lungs but also his stomach.

He starts to moan uncomfortably. “What is it, Segev?” Soon his legs are thrust forward, then one leg recoils and is thrown out again, his left and right arm slowly, unevenly contract. The moan is louder, more urgent and begins to take the form of wailing. Your stomach, I think to myself.

“Come Segev, let’s get you out of the chair”, and I unstrap his hip restraints, catching a forearm in my face as I bend down to him. He complains loudly. He is nestled in the chair, the side supports pressing slightly and I slide my right arm behind his back steadying my stance and thinking about the distance of the wheelchair to the couch where I will place him to work on his stomach.

Segev’s chair is too close but the urgency of his cries makes me nervous and I lift him up out in one sweeping motion. Sixty six pounds of contortion that above all I have to keep safe, navigating the short awkward distance, leaning over the couch but forced to place him as gingerly as possible. The last few inches I fall forward but Segev is softly accepted by the cushions.

I begin pressing on his abdomen, to palpate any hard areas. He is complaining a little less. “You know I’m going to help you don’t you Segev?” His answer is a seizure: he stiffens, exhaling forcefully, a half smile locked on his mouth, arms and legs jutting outwards. He stops breathing only for a few seconds before some misguided swallowing starts, collecting saliva which then enters his lungs. I scratch the bottom of his feet. He starts swallowing more rapidly, loudly, coming out of the minor seizure and begins choking on the saliva, his eyes darting toward one side. I lightly press under his chin to force his mouth closed and he begins breathing normally, the dynamics of his swallowing restored he no longer chokes and I continue pressing on his abdomen.

He already had a bowel movement today, a normal quantity, so first I must check if it it air in his stomach causing his discomfort, learning, after having seen how Segev can complain for hours and finally let out a small sharp burp, two even three hours after a meal, finally releasing the pressure and allowing him to calm down, fall asleep, to instigate a regimen of checking for air in his stomach each time prior to giving him to drink or eat or medication and when his breathing is particularly unregulated.

Massive amounts of air reside in his stomach, causing him to vomit if not caught in time or sufficiently, as well the g-tube diameter having become too narrow for the hole in his abdomen, air is sucked in along the sides.

The one-way valve does not want to open in my direction, doing its job, so I attach the feeding syringe, open-ended, to the feeding tube and this allows a rush of air and liquid to bubble from his abdomen.  He looks more relieved and quiets down, almost immediately closing his eyes.

Two hours later he wakes with a seizure, always a seizure, and the complaining starts again.  While he slept he was given inhalation, not ideal because his breathing is even more shallow when he sleeps, but necessary to keep his lungs moist and able to bring up the monstrous quantities of phlegm that constantly accumulates. Also I gave him to eat, as the ketogenic diet has very regular hours and Segev must have five hours between his meals unless I want him to vomit, the semi closure of his stomach that is upposed to arrest this, the nissen fundoplication, having released years ago.

The waking seizure passes slowly. “Hey Buddhi!”, I chime, “You were sleeping, Buddhi, and I gave you to eat while you slept” I inform him. He smiles and gets caught in another seizure. This one is small and lasts only a few seconds but again I do need to close his mouth to restore his breathing. 

His voice comes out raspy and stops suddenly, then starts again. His swallowing makes an irregular clicking noise, somewhat muted meaning he has a mucus plug in his bronchial tube somewhere. He swallows hard now and his breathing is irregular as his chest rises and falls abruptly and deeply.

Usually a plug only happens after he’s had a longer sleep. I pick him up and sit down on the edge of the couch, balancing him on my lap with one arm behind his back, supporting his head with my shoulder and begin clapping on his chest, side and back. Then I put my hand on his back and administer chest compressions with my other hand. I start again with the clapping, cupping my hand to get that ‘thump’, ‘thump’ sound which indicates a certain degree of suction, driving the moderate force deeper into his chest wall. More compressions on his every second exhale, the first exhale always being too superficial and ends in resistance on his part if you attempt to push through anyway.

The noise of the air exiting his lungs changes tone and I know that a cough is close, even imminent so I continue with some urgency. The phlegm is loose with a rush of air and I quickly activate the suction machine, grabbing the catheter tube and bringing it close to his mouth. The pulse of the machine is like an organic thing to me, I know it will help me and I see it as an integral part of Segev’s breathing.

Segev finally coughs and a split second later I place the tube into his mouth, toward the left side where nearly always the phlegm rises and catch the culprit. Segev smiles as I suction, the tube sliding effortlessly into his throat with the gag reflex gone years ago.

The suction catheter gets a rinse in the big plastic cup with soap while Segev chuckles then locks his jaw open and goes into another small seizure. Should I put him back on the couch or back in his chair?

November 14, 2010

500,000 seizures have not killed my son

Prodrome 

Surely, this is a mistake. Perhaps a bad joke. What child could have 500,000 seizures? It's not possible.

Whether it was a month ago or whether the actual day will be two months from today, Segev averages one hundred seizures a day. There have been some days, far gone, that he had only twenty seizures but also days that he has had well over 150 singular, separate, visible seizures. Segev has had roughly 500,000 seizures in his life.

Most are small ones, where he will stop breathing for only a matter of five to ten seconds, especially if you scratch the bottom of his foot or pinch his cheek. Some are monsters. I mean real monsters where it looks as though a monster is trying to tear him apart from the inside out. The over-familiarity with them helps to assuage fears somewhat but nevertheless require the same quick reaction, the same monitoring, the same oxygen and the same feeling of sadness that he must suffer them and be non-responsive the rest of the day, each and every time.

How much mileage does your car have? Can you think of putting 500,000 miles on it? What shape would it be in after that? Obviously the human body is so much stronger than a car, otherwise Segev would have died years ago, if not from the status epilepticus than from any of the other problems he has. The fact is that he has died on the operating table a number of times. How much has his 'maintenance' helped him and how much is simply his fortitude a factor? It's hard to keep a level head when you see so much suffering in so many different forms in one single person.

But even when his intestines had ruptured in three places and I stood in the waiting room while they poured the equivalent of an adult's body blood content into his little frame in an effort to keep him here, I was calm because I felt that he would pull through. Some may think this was merely wishful thinking on my part but I know different, having tested this situation many times. I simply knew that, the surgery itself at least, he would survive.  By the time the PICU had stabilized  him he was unrecognizable, so swollen.

While he lay there in the induced coma, on a ventilator, his hand would still twitch.

It's not some kind of milestone, this 500,000 seizures, not something to be proud of, just the opposite, I feel like I have failed Segev in some way. Impossible to know how it could have gone another way and as I've said he is undergoing changes even today, which should be nigh impossible after his brain has supposedly suffered such damage from the myriad seizures. 

This little bundle of humanity, born with nothing more than a very weak sucking reflex and a perpetual maelstrom in his brain but with a great heart that won't quit. A child that was given no chance of survival, no possibility to develop. No startle reflex, no reflexes at all. Consumed by pain in a world of darkness and confusion, nowhere to get a foothold on life, a person obliterated before getting to make a stand, never able to form an opinion, never able to make a choice.

A person like that is quite special and deserving of respect. Deserving of having someone nurture him and thus give him a dignified existence. For me nurturing is a complex issue that encompasses this idea of dignity while maximizing his ability to experience positive things in life. Maximizing may mean treatments and therapies but, having tried and seen Segev's potential does not lie with trying to make him stand or turn over since he cannot control his body, the maximizing lies with physical contact, the holding but also with using that moment to apply techniques of pressure to steady, change and encourage not only his bodily functioning but his knowledge that there is this love where one person takes care of another.

This is probably the most natural thing in the world and every mother knows this experience with their child. But when there appears no reaction from the other side for years you might begin to wonder. And as the complications of illness and disorganized bodily function necessitate a certain distance from that person because you cannot always simply hold them, they need help, treatment, care, you start to see more of the illness in that person and less of the person himself.

The child going into an institute, while never an option for me, will not necessarily make the distancing more severe than having him at home. With a child so utterly dependent it is a short path to seeing their medical status take over the better part of their identity.

Taking anything away from such a child is naturally an abhorrent thought, since everything was already taken from them. Their very ability to communicate so truncated that there is only enough to show displeasure or pain and contentment. This cannot be construed to say that they don't have desires or thoughts, simply that we cannot see them. Therefore we naturally cannot live a complete relationship with them, as we know it. 

Yet Segev surprises in ways that subtly show me there is much more understanding going on While I have never given up entirely on the notion that he might be able to grasp my hand one day, after twelve years of trying he still hasn't been able to do it. On the other hand, after having the ability to protrude his tongue for a few years now, with the qualification that it could not usually be repeated the same day, he has in these last six months gained the ability to repeat it within a few minutes of each other.

Sometimes assessing his level of consciousness is guesswork and so what appears to be a listening Segev is actually a 'don't waste your time, I'm out of it' Segev and vice versa. The fact that he is not able to grasp my hand though, does not tell me that he is not aware of what that is, nor that he doesn't desire to do so. He cannot communicate anything about this issue but in light of his tongue control, for example, I am going to assume there is much more going on inside his head than I can possibly know, despite all the stupefying medications. Rather like you would wish it assumed of yourself that much more is going on upstairs than is readily visible.

In looking at the best possible treatment for such a child, there is of course not one singular method. The point here is more to accept that being imprisoned as they are, such children should have their dignity pondered over, considered. It shouldn't be an easy task either, perfunctorily established  as though it has always been clear how extremely disabled children should be viewed.

If this is the treatment, what is the sickness?

Growth attenuation is something I had to think about for my son simply because if he were to grow to normal proportions, completely paralyzed as he is, his health would be more compromised by it. Fortunately for me, though he does grow, it is at a very subdued rate. Already he is a bit too much for me too handle and I have to watch his caloric intake to make sure that he doesn't gain anymore than he needs.  
One of the questions though, when considering growth attenuation, must be, how much do we know about growth for children in such a state as my son?  More importantly I think that certain aspects of the procedure, as the girl Ashley X underwent it, may be completely erroneous, such as removing breast tissue because of the effect her otherwise developed breasts might have on caretakers or the discomfort they may cause. Discomfort, on whatever level should never be an indicator for surgical removal with a child that is unable to communicate her desires.  Life-shortening or capable of causing severe pain are reasons.


Growth attenuation, a series of procedures, have been introduced and are advocated as a treatment, when in fact treatment is the application of defined methods and techniques to ameliorate a state of pathological ill-health or render such a state less severe, even pro-actively, for the very state of being extremely disabled which is clearly not a disease state itself. Here then you are stepping on ethical ground the firmament of which has not yet been established.

Whether considered grotesque mutilation or the blessed act of remitting harm and discomfort, the Ashley X advocates should understand that such procedures does not automatically evoke a fully formed model of dignity and nurturing though they imply, mostly by repetition, that it is.

Historically it is typical  of us to blunder forward without foresight, that's how progress can be made. Most likely the increased interest in the issue of growth attenuation as a result of little Ashley X undergoing it, though without the child having a choice and technically illegal, will make for fertile discussion and eventually establish guidelines that will seem more realistic than the horribly antiseptic treatment Ashley had to suffer.

It may seem tempting to view her parents as either brave or heroic for putting Ashley under this treatment since they apparently acted upon information that she would never develop mentally, never have any body control. This may accurately describe her condition even, I know that such a description fit my boy perfectly. But they were wrong about my son's chance of development because we are in need of better assessments. Assessments which can be written by medical professionals who are guided by the parent.

But I always do tend to hang around till the credits roll even though you know 'who done it', until the last throw of the dice hits the backgammon board, despite clearly having been beaten, because in those moments linger the idea of how things could have been different, there lingers the potential for other things, for change, for learning.

When you do that often enough, you get a sense of the potential that rests in dormant things, the potential, even if it is only an extremely disabled child's thought.  I know we can never know that thought, but I'll always play it out until the end, to give that thought some space to be.

November 12, 2010

Today

There is no soft Jazz playing, relaxing melodies, but Segev has stopped screaming and the quiet after the cries for relief is the best sound in the whole world.
I've seen a soft smile on his face today, like a whitewash of emotion, transform the ugliness of pain. Sleep precious prince, sleep dearly.

November 09, 2010

We made the trip to the city to see the pediatric ears-nose-throat surgeon. After half and hour of going up and down three elevator towers in the mall/office building, after the sixth call to the secretary that, no, I cannot find it, that no the office is not to be found on the second floor anywhere she says to me, "where are you?".  
"City centre, where you told me the office is on the second floor".  
"No, Sir, you are mistaken we are in the building across the street called 'the doctor's centre'."
 "Go outside" she says. "Go out of the city centre"
"Alright."
"Leave the city centre" she adds. "Go out of the building you don't need to be there"
"Gotcha", I respond.
"We're not in city centre, Sir, you have to.."
"..go out of city centre, yes I understood that".
"Across  the street at the back there is an elevator, we're on the second floor."
"Fine", I sign off.




All this time Segev is doing well, he hasn't complained even once yet, his breathing is of course very good since we are going to see a surgeon about cutting a hole into his throat. His wheelchair barely squeezes into each elevator, the foot rest bumping up against the far wall, the doors barely missing the handlebar.
The elevator across the street in the 'doctor's centre' is even smaller. I press the button for the second floor and up we go. There is a dentist's office there. It is closed. I don't even have to leave the elevator and press the button marked number '1'. That's where the surgeon's office is. "You are mistaken, Sir."  My blood is simmering. No mistake here.

The surgeon is amicable, listens to my protracted, if precise, history of Segev. I only discuss what is relevant to this particular operation but even that takes about ten minutes. It is my duty here to impress on the fellow how labile Segev is and to get answers about specific issues like suctioning, vomiting, air passage, vocal chords and many other things. Segev starts to complain, very loudly. His stomach has been bothering him a lot the last few days. The surgeon turns on an industrial cooling unit he picked up from Batman's nemesis Mr. Freeze. As the cold air blasts me from behind it undoes years of care in a matter of seconds.

The left arm of Segev's wheelchair suddenly falls off.

The surgeon, listening quietly to my questions answers, "well yes, with the hole there is a direct passage, closer, proximity and thus much easier actually to suction. Better ventilation, certainly."
I ask him about the issue of seizures, the fear being that Segev's violent seizures could end up dislodging the seal or tube itself.
"Yes, well, when you have that, then of course the treatment is easier, the direct air passage, proximity, better", he responds.

"?"

His mouth and eye start to twitch and he begins speaking rapidly. The surgeon, not Segev. 

Segev has left the room in the mean time with his mother because of his screaming from discomfort. I am picking up screws off of the floor with one hand, holding the wheelchair arm in my other, the surgeon has not missed a beat and is repeating for the fourth time that we will have to see about reserving a bed in PICU. He has no pauses between sentences and his twitching is getting worse.



I thank him and get up but he continues talking, repeating himself. I shake his hand, apparently the most important moment of the meeting for me since it's obvious that an understanding of Segev's needs I won't find here, but if his hand tells me something...his hand is soft and light, like those neck cushions with the styrofoam beads in them. The hand of a surgeon. He knows what he is doing with a scalpel at least, after more than twenty thousand treatment hours, I can tell.  

Segev has quieted down and the trek back to the van in the underground parking, accessible by tiny elevator, awaits. Then a half hour drive home. Lifting the wheelchair into the van is especially difficult after the surgeon's bid to turn his office into the fortress of solitude.

He agreed with me that we could still wait a little, as a matter of fact he kept saying, "well, if, as you say, his breathing has worsened considerably the last few months" as though he didn't really see any necessity to do the operation and yet he added, "of course we can't wait too long.  Hole, better airway, proximity, easier, you know". 




  

The Porcupines - 1999

written for Noa as a night time story. Segev was less than a year old.

One day in a small part of the forest, behind some bushes and inside an old hollowed out tree, seven baby porcupines were born to Mr. and Mrs. Porcupine.
They lived happily in the forest eating all manner of little tid bits - nuts and berries that had fallen from the trees and bushes. They were very happy and so they decided to share their happiness and have children.
On the day that Martha Porcupine gave birth birth to her seven little porcupines - Nahum, Elisa, Shenhav, Kalya, Shoval, Noa and Segev, everyone in the forest was very excited because the Porcupines had so many good friends.

Perhaps she had miscounted she thought. "Perhaps you've miscounted, Martha" said a particularly stern Goose. "Perhaps you have only six little ones."
Martha would have none of these interruptions. She had counted seven and so there were seven. It's true that the gray brownish colour of all the babies does tend to make them blend together.
She put her hands on the babies and one by one counted them off, patting each on the head as she did.  "Wait a minute!", she exclaimed as she finished patting out six of her babies. She reached into the prickly bunch, wriggled her hand underneath and grabbed hold of the seventh baby. 
"Ah hah! You see?", she said, pulling Segev from under his brothers and sisters. There was a great big gasp amongst the gathered friends. Martha stood, holding up Segev by his legs, smiling proudly.
"What's the matter?" she asked.  Then she looked at the baby porcupine - he was entirely black!  All of his quills were extraordinarily long and jet-black. How can this be, she thought. How indeed!  She had counted the babies as they came out, but they all looked equally dark that moonless night. 
By morning Segev had wriggled until he found himself under his sisters and brothers. Being the last one out of his mother's womb he most yearned for that comfortable warmth.
A Black porcupine! Have you ever seen such a thing?

None of the animals could any longer contain themselves and they moved closer to the stunned Martha. Poking Segev, sniffing him - a tumultuous cacophony broke out as each animal interjected his or her opinion as to what had brought about this most strange occurrence.
But since all the food had long been eaten the animals moved off, singly or in groups - clucking, chattering, snorting continuously as they went about the more pressing business of procuring the next meal.
Mrs. Porcupine sat bewildered and joined the now thoroughly unhappy and thus crying Segev, shedding her own sad tears.
"Come, come" said Mr. Porcupine, wisely staying silent until then."You're over-excited, that's all. It's a wonderful thing that has happened to us." He looked at the ground. "Uh, I think."

The Porcupines went off to their home in the hollowed-out tree and began to take care of the babies.
Although Martha hoped and prayed - her little porcupine didn't shed his annoyingly long black quills for the more ordinary brown or grey. Segev would hardly eat and he grew only very slowly - he was a great worry for the Porcupines. But eventually he became bigger and bigger and his shiny black quills grew and grew until he was the biggest little porcupine that anyone knew.

Segev two days old