July 21, 2012

Dazed and confused

Segev has been on continuous oxygen supplementation for three weeks now with no sign that the deficit in his left lung will yield any time soon. As perhaps should have been done when I first discussed it in earnest one and a half years ago tomorrow I will actively pursue bringing about the tracheotomy surgery. 
Last night certainly left no room for discussion as I was >this< close to calling an ambulance, which for those that know me already means, 'it's serious folks'. After getting up every twenty minutes or so to adjust the oxygen condenser, which was buckling under the 33 C heat in the house at night, physio and repositioning Segev's saturation continued to drop, briefly down to 79% and even with the addition of pure oxygen it wouldn't cross 84%. 

Segev actually didn't seem stressed at all. Despite that the left side of his chest was not seen to move he seemed quite content to let it be, perhaps in the same way that he has recently started doing again when he stops breathing several times a day, without showing signs of struggle. He seemed more bothered by the constant timed compressions i was performing on his chest. 

I don't silence the grating alarm of the pulseoximeter since that gives a false sense of security and lessens the urgency with which I work.

So I had to hunker down and spent a solid one and a half hours pressing, compressing and massaging as well as trying to open the left nostril which is probably blocked from the broken nose he suffered a few years ago.

Finally at 03.30 the gods smiled and his level was enough that i felt it safe to go back to my bed, a distant 30 centimeters from Segev. From there I probably got up no more than once every hour to change his position, vent his stomach and suction him until it was time to begin the morning routine.

He is lethargic but at least he is conscious. He hasn't smiled in a while and complains a little. A different shade of trouble from the horrendous screaming that plagued him for months. A pound of trouble or nearly half a kilo of problems, which would you prefer?

July 18, 2012

Update about an oak

The great oak of your youth stood thrashing in the wind with bold infirmity giving neither inkling nor inclination to break that bond of innocence as you watched season after season storm after storm always watching the silent oak mesmerizing time with its obedience and fortitude giving certitude and continuity that strength which you siphoned not knowing as you grew older that the final storm to find one day unwitnessed an act of God perplexing but broken having stood long enough to endure your mind and strengthen your soul, that oak of your youth.  - Eric Fischer

After 48 hours with Segev it is time to bring him to his mother and use the day to run errands, after a bit of sleep, perhaps exercise. Do you remember the video of Segev arriving? After I have carried him to the car and my daughter stays with him it's time to bring down the wheelchair:


From Facebook (today):

The evening brought more trouble as his oxygen dipped under 90% despite supplementation. Literally hours of physio therapy in addition to the nebulizer, suctioning, oils and herbal supplements did nothing to increase his breathing.

Then at 03.00 in the morning his level dipped to 84%. More physiotherapy which lasted 45 minutes, increasing the oxygen to 5 liters on the condenser resulted in it buckling under the 33 C heat in the house and I resorted to keeping it at 4 liters and adding 2 liters of pure O2 but still it wouldn't cross over 89%

Finally air could be heard entering and exiting his left lung and he coughed, which I suctioned vigorously and his oxygen went back to 94%. During the rest of the night it continued to dip and rise, sounding the alarm.
Then, after the morning physio session and nebulizer, this:

July 16, 2012

The Olympics are coming!

In order to achieve excellence in a level playing field an athlete must be both gifted and train diligently each and every day, sometimes to the point of breaking. Diet must be scrutinized and coaches must use decades of learning and experience to push and motivate, direct and support their athlete. The sacrifices in both personal life and wear and tear on the body is extreme. Very few become "champions" and most withdraw from active competition after only a few years. Physical accomplishments, of the extreme category, are always the realm of the young.

While I am that perhaps hyperactive, over caring coach; always up before the athlete, always carrying his bags, working out of love but not a love of money, Segev my son, is without a doubt that extreme Olympic caliber athlete giving his all for extreme physical achievements that would lay waste to the vast majority of regular folk.

This is not intended as a whimsical metaphor; my son is challenged in severe strenuous physical ways every day. He is an extreme athlete and I challenge anyone to mimic his physicality and level of physical exertion for a 24 hour period, as he lives it each and every day. From the crushing kyphosis impeding breathing, together with the over one hundred seizures a day, including the massive myoclonic-tonic ones where the degree of muscle contraction he maintains can not be achieved by conscious effort, to the ability to scream for several unremitting hours.

Segev's physical achievements should stand as legend. 

For over twenty two years I have been treating patients with mostly techniques of manual therapy. During the course of 22,000 treatments I have been palpating, adjusting and supporting bodies that have typically spent 50, 60 or 70 years developing certain patterns of wear and tear. There is an enormous amount of variation to be seen due to genetics, environment and occasionally diet. Age is of course a major factor and conversely I have been able to view primary patterns of tension establish themselves as early as age one and a half.
But when I treat Segev each day, particularly in relation to the rapid decline I have witnessed in him these last six months, I find a level of devastation on par with that of an 80 year old man, in very bad condition.

Followers of Segev's facebook page are well aware that since mid March he has experienced a period of extreme suffering unprecedented in intensity and duration. In one of many letters written to several physicians I went so far to use the word, "inhuman" to describe the paroxysmal episodes of excruciating pain that afflict Segev.
So many medications were attempted, even when clearly contraindicated to one of his medical conditions, to try to obtain some modicum of relief. Some drugs worked sporadically while others could be repeated only sporadically. One drug could only be prescribed by a pediatric neurologist but all four that I contacted were unavailable for months to come. Several drugs had no effect whatsoever. An application for medical cannabis is still being processed. More tests are planned.

Recently the pains have subsided greatly, having lasted for nearly 15 weeks. While I absolutely rejoice at the fact that the torture has lessened dramatically it is abundantly clear that, since the episodes first made their appearance early in 2004, they will continue and as is always the case when an extreme athlete reaches a plateau, new challenges are brought before him in order to further hone the ability to astound and mystify our perceptions of what may be achieved.
In other words Segev has the very serious challenge of a return to status epilepticus to contend with which, in contrast to all previous times, was treated at home not hospital. Some may recall the repeated, if not blatant, negligence which endangered Segev in previous visits to hospital. We can add to this the fact that Segev has now been on oxygen, up to 6 liters per minute of pure O2, for over 14 days now, 24 hours a day.

It is entirely unclear what is happening, though perhaps better put, what is happening to him is probably a result of a collusion of elements, primary amongst them the accelerated wear and tear visible on his frail little body.

On a personal note, I cannot afford to go out like the legendary trainer, probably a chain-smoker (who actually takes care of themselves in situations like this?), who dies of a heart attack before the big race, fight, track meet, final stretch. Due to increasing health issues I have implemented a strategy of delegating a little bit more of the responsibility, even when it is clear to me that the level of care is not what I believe is necessary, because the simple truth is that I am much less able these days. Not less willing, mind you, just less able.

July 05, 2012

It's all in the wrist

warning: foul language is present.

I'm hesitant to place some kind of update about Segev here because of the nature of the rest of the piece. Those that really want to know about Segev seriously need to click on the facebook page link. Now for the rest.

Let me tell you what nine plus years of sleep deprivation does to you: it fucks with your mind. For starters you use the word “fuck” in inappropriate places. Your thinking becomes crimped, even confused. You cannot concentrate well and you come to conclusions much more rapidly, bypassing normal mechanisms that allow you to discern subtleties of thought, conversation, behavior.  You lose all nuances in other words.  You begin to slur words and chunks of memory are missing.

You snap at people who are close by and your anger is always just underneath the surface. This isn’t anger that comes from, ‘oh woe is me’. This is not anger because your life turned out in a way you wouldn’t dream possible, wouldn’t wish on anyone. There is no anger about a life as a dedicated caregiver, it is simply a physiological matter stemming from the lack of proper sleep. As when some people who are sick, even dying, are angry; they use it to bolster themselves as a defense mechanism. Anger activates adrenaline and testosterone, in short it’s a power drug and can be quite useful to bulrush through hardship.

The problem is of course when the hardship lasts a very, very long time since you deplete not only your body's stores but eventually its ability to recuperate. 

Sleep deprivation is a significant factor in altering your mental status and of course your physical wellbeing.  What is improper sleep? For me it means on a good night I only get up once per hour to attend to my son’s needs. On a bad night, every twenty minutes but usually with a tail-end sleep marathon of 90 minutes somewhere around dawn. If he can be settled, with proper breathing, by four or five in the morning, the reward is that 90 minutes of rest.

Subset, sub culture: Special needs, severely disabled, complex disabled, extremely disabled, absolutely disabled. These could mark five steps of descent into hell by those that live in this cultural subset as parents and caregivers of such children. I’ve come to the conclusion that our group is a sub-culture that needs, with historical precedent to look after itself in a grass-roots kind of way. No one is coming to save us. Yes, many advocates are out there, for example the fantastic Ellen, who sets a great tone for speaking out and involving people on many issues related to disability, or the “Kidz” page with always useful tips, kind and positive thoughts.

But I have become, in my mind at least, a kind of anti-advocate. This is not 'against' what others are doing; quite the opposite. Even when disagreeing with others I will support their efforts out of solidarity, putting aside my own personal interests. Because that is the crux of the problem right there. Just as whatever I put forth here is simply my own opinion, my life taking care of my extremely physically and mentally compromised and medically fragile son which is an experience that few others share, the very nature of providing care in such a situation does what any specialization in a rare and complex field must do; it isolates you. 

While it is also true that many believe they are alone, facing hardships with their kids, many have found through electronic medium that there are others toiling with similar issues. But even of those that have an outlet which is somewhat comforting, or ones who follow silently in the footsteps of others,listening, waiting, the gelling of a community grass roots kind of organization in the world of extreme parenting is complex and distant.

When I look at my experiences, particular to my child and the country, times and culture I live in, there are unique obstacles, many of which I’ve had to reconcile with as being inevitable and some insurmountable. Many of these have to do with the limitations of human biology in correcting ill-health and some with the unwillingness of many to look beyond their limited experience, far enough that they become what I term, ‘seekers of knowledge’.
Still, as I look inside I see a battle scarred veteran who has aches and pains, both physically and mentally, that no longer allow him to function as he once did, relate as he once did, forcing him to be more conservative, relegated, like the system he is so often fighting against.

I see friends who have become ‘institutionalized’ by their positions as caregivers, with spouses no longer even aware of the habitual role one person carries, as though the weight of care simply lightens and slips away with the years. People who are desperate for change but afraid that they can no longer muster the strength and resolve to see the changes through, which could give them back a bit of their own, inner identity. They may be right to have such a fear. There are others who, as I wrote about a few posts previous, have found a foothold on a path that is exactly what the caregiver/parent should be aiming towards; semi-autonomy for both the child and the adult.

With saying, ‘anti-advocacy’ I am merely pointing towards the feeling of institutionalization when the caregiver no longer has the ability to meet their basic needs for expression, companionship, a little bit of private space. Accompanied by sleep deprivation, ageing or health problems the mind will find a way to compensate. It might be as innocent as daydreams or as destructive as addiction. I’m worried about these things, for others that I know as well as myself.  I see what it is doing to me. The harder I’ve tried to fulfill my role, the more resistance I’ve met. You have to walk a very thin line with everyone. With the physicians, para-medicals, your own children. When you are in an extreme situation, isn’t it natural though that you behave in an extreme way? Perhaps, but accepted, no. On the other hand sometimes you just need someone to set you straight, give you a little warning or firm direction.

I’m an ‘oi’ person. Not so much as when used in the sense of “Oi! Look out!”. Here ‘Oi” stands for "overly intense". I made that up but it suits me as a moniker. Strangely I look to other people involved in my son's care as though they should match the intensity of not only physical care but also the active pursuit of understanding and creating methods of care. This is quite ridiculous and has caused me a great deal of hardship, i.e. two failed realtionships. “I am my own worst enemy” never found a better home. 
Each person and organization brings particular abilities to the table. Each family member has a role that is unique and this ubiquitous approach of mine is exactly what has worn me down so much. I’ve spread myself thin for so long that only the stale dry bread is left. Not a tasty meal, not much nutrition to offer.

But who sees this and understands? Who understands your needs in a comprehensive way? It’s obvious the only way to shoulder the burden is to do it with many hands. Help from friends and family, institutions, organizations, local council and the board of education and so on. Funny that the first few are often unable to help, perhaps from lack of understanding what to do. Perhaps from a lack of understanding that your anger doesn't come from being bitter at the world but from physical hardship. Organizations and well-wishers alike are all full of good heart but the delicate and complex needs of my child, which has created a whole world of routines and also superstitions, in the placement of my family's life, has a dynamic uniquely its own. 
This leads me to conclude that the degree of burden I must shoulder is directly connected to my perception of my son’s needs. There can be no absolute right or wrong here, the ability to read nuances must be restored. If you don’t find your way back to that way of thinking and additionally cannot maintain a normal amount of sleep, I fear madness will result.