May 26, 2016

Thoughts, after fifty years on this earth.

Forty four years ago I decided I would become a writer, because I wanted somehow to bring about resolution to conflicts that I witnessed people experiencing in their lives. That was my second choice, actually, my first was to become God, but I quickly realized that if I could think of that at age six (I wasn’t terribly concerned with actually how I would become God) then adults, infinitely smarter than myself and higher up on the pecking order, could do so and would be given preference.
But stories could be manipulated, changed, and so I vaguely envisioned rewriting people’s lives and conflicts and that they would then be able to see that things could be done differently and the outcome would be a more positive one.

I wrote all the time, nearly every day, or simply made up stories and told them to people, sometimes placing myself in the narrative. These stories are not to be confused with ‘lies’, ‘fibs’, ‘fantastical concoctions’ or ‘wild tales’, though I was not infrequently admonished that this is exactly what they were and that I should, ‘stop living in a fantasy world’. I was not deterred, my intentions were pure.
In adulthood, I discovered a connection to certain aspects of people’s narratives by being able to intuitively say the right thing to a person at the right time. These rare encounters were to have a crucial influence on peoples lives, in essence allowing them insight which led them to an alternate future. That realization came roughly at the same time that I decided to (temporarily) abandon writing, a decision that held sway for over fifteen years.

The very first thing I wrote after this period was a poem memorializing my mother-in-law, of whom I was very fond and successfully helped treat for pain and discomfort after she was diagnosed with renal cell carcinoma. Years previously, waking one morning with an epiphany, I chose the profession of physical therapist and based my practice exclusively on visiting patients in-home. I seemed to gravitate naturally towards treatments and strategies of pain management. This calling is now ongoing for more than 26 years.
In 1998 a force majeure entered my life when my son Segev was born with a life-limiting condition and extreme disabilities that made him wholly dependent on round the clock care by his loved ones. For eighteen years we have struggled mightily to allow him the opportunity to live, to allow the meaning he brings to our existence to unfold. Countless times he has been close to death, pulled back from the brink; either by the brazen sheer strength that his tiny paraplegic body somehow magically contains, or by the will and determination of his family to find solutions that give both longevity and quality of life.

In the last few weeks Segev’s weakened, poorly functioning body, was struck down by a viral pneumonia that brought him to within hours of death. But he made a partial recovery that has allowed him to hobble along with a small portion of his lungs still functioning. Unfortunately a neurological downturn began developing concurrently, exacerbating the horrendous seizures which have plagued him daily since birth. For nearly a week now my son has been in a medically induced coma (not unlike the natural comas he has faded into too often) and the situation doesn’t look good.

But, I don’t have a plan. I never do. Remember that thing where you say the right thing at the right time? Intuition? It hasn’t failed me yet, but that doesn’t mean it always appears when you want it to. It just doesn’t seem to work that way. And it took me decades, decades, to interpret the things I was seeing or feeling, so that I could make decisions with confidence. After 18 years of caring for my son, a toll has been exacted, a levy imposed on my mind and body which has shaken that confidence. Depression, singularly the result of continued exhaustion from chronic sleep deprivation, acts to further dip one in the murkiness of doubt.

The one thing that now preoccupies us, on an hourly basis, is what is best for my son. What would he want, is an impossible question since he has never been able to express anything but either joy or discomfort. So we have to find an answer within the confines of those experiences. For myself I have always known that if his smile disappears, I will not be able to maintain that grinding pertinacity that seeks goals, if all that it will lead to is oblivion. The only goal which remains is to do our best to make him comfortable, that is obvious, if no easy task, not in the least because we are beyond tired both mentally and physically, stressed to breaking point. Financial pressure mounts as I am unable to work.

The thing that isn’t so obvious though is that during the course of the discussions of late with his mother and siblings how questions of our own ‘comfort’ perniciously creeps into that equation.  Not actual comfort, much more what and how much can we do that still bears resemblance to a path of dignity for our beloved Segev.

I wanted to say, ‘as I have been unable to work, since doing so would compromise my son’s chance at a momentary reprieve, a few moments from which to squeeze a last bit of joy from an exquisite life’. But there you have it. Dying isn’t pretty folks, especially where kids are concerned and after eighteen years of this business, I find myself unprepared. I don’t want it to end, which has served us well, bringing us this far along, but that is now a hindrance. Because after all, what a parent wants in this situation is to see with clarity; not only what to do, what to think, what to feel but to come to terms with the fact that somehow, somewhere, this is OK. That to ‘rage, rage against the dying of the light’, can be replaced with the knowledge that all journeys end, but that that doesn’t diminish one iota from the experiences that have enriched us. Bathing our very being in a sweetness and purity which are immortal.

May 05, 2016

The aging caregiver

There was a short conversation with the palliative physician who joined the team about six months ago. Going forward, after the catastrophe of attempting to control my son’s pain with a variety of opiates, putting him at death’s door yet again, he said he was running out of options. Fortunately I was able to increase his three other pain meds and add a fourth, which is helping Segev considerably.
But today is another such day where he is suffering signifcant pain. The last week has been another episode where he is vomiting frequently, his lungs are heavily congested, there is an increase in seizures and drops in oxygen saturation and a hard battle with an infected gastrostomy site, despite the constant methods of care. Today is another day where I need to decide whether I go to work or stay by his side.

The other thing that the physician said, more a rhetorical question, was “You know that what you are doing is utterly exceptional, right?” He continued, “The way you, his mother and his brother and sister rally around Segev is amazing. I’ve never seen anything like it.”

Since his birth, in order to give my son the full attention he deserves has meant cutting my work week from six days to just two. And consciously working to create an environment where his brother and sister became competent in providing practical assistance for all of the varied and complicated issues that are dealt with throughout the day and night, was no small effort. But this has paid dividends tenfold so that Segev is still with us today. Whether simply providing suction or venting his stomach or, as the case was in March, physically holding his airway open while, gutted with fatigue, I had to calculate the proper dosage of sedative to be given subcutaneously, they are there for their brother.

Being able to work only two days a week in my profession as physical therapist, with some degree of irony as a specialist in pain management, very quickly brought us to the poverty level. At that point, beyond what life with my son brings, be it chronic sleep deprivation, back issues, tendinitis, memory loss and clinical depression, your world becomes even smaller. And yes, quite a bit more simple. There are no extracurricular activities for the kids, no new shoes, dinners out or, as often is the case, birthday presents. With time those things cease to matter. Still, while able to provide a roof over our heads, the sting of not giving your kids a ‘regular’ upbringing becomes surprisingly more potent. They have though, become used to it; it is their ‘normal’. 

With his worsening condition over the years, punctuated by an endless nightmare of life-threatening crises, there are no trips together and even walks around the village are out of the question. With Segev requiring some kind of action to be taken every 30 minutes, rest is impossible. 

Obviously this obsessive behavior of mine has had negative results as well. The stress everyone lives with is through the roof. Our lives have been put on hold, though I’ve always pressed my other two children to forge ahead, study, go out and pursue their dreams and they are in the early stages of doing so. Perhaps a little later than others, but what matters is that they have their dreams and thankfully tremendous talent as well. None of that has been completely stymied, for which I am ever so grateful. Perhaps the perseverance present in our lives has even given them a strength that otherwise would be lacking. I can only hope this is true.

February 08, 2016

The Savage

I feel I need to write this, yes, in the middle of it all. During the night we took turns, inserting a finger into my son's mouth and pulling his lower jaw forward, allowing him to breathe. Yes, without doing this he would have died. Suffocating. Slowly or quickly, I didn't know, but the natural thing to do was to fight for him, when he couldn't fight for himself.

The why and how of his deteriorating health, and the repeated incidents over the last few weeks of status epilepticus and no longer being able to breathe on his own, seems almost irrelevant. My mind still races though, even as I write this and he lies next to me on his side to allow his lungs to drain better, to try and understand the possibilities, the causality. And we've made decisions based on how we interpret that information. We've decided that if this happens again we will most likely take him in for an emergency tracheotomy. Because even when there is no air coming into his lungs, you can see him making the effort to breath. He's not ready yet to leave this plane of existence.

I slept for three hours on the couch at his mother's, while she held his jaw. My daughter suggested a position for him to lie in to force his airway open with enough success that the need to manually help him to breathe became less frequent. The seizures, which started in the evening and have continued through this morning have been reduced with massive sedation. His lungs have filled up again, despite the constant treatment and all these things have blended into a fireball of destruction.

The good times have been there, I have pictures to prove it for when my memory fails me, and I assumed they should give us the strength needed now, but in a somewhat bitterly farcical sense, those moments stand in stark contrast and offer little help.

To be honest, it's eating at our resolve, or perhaps to put it into a more positive light, we are simply recognizing that this is the natural course of things in my son's fragile and savage life.

January 16, 2016

raw update: nothing is the same

It's difficult to know what my son is experiencing right now. Every aspect of his condition has worsened dramatically over the last month. The last week has been hell. While we bombard him with multiple pain medications, it's true that he suffers much less pain.
Using opiates is not a new idea but one I've always vetoed until recently, relying instead on standard pain meds and cannabis. None of which significantly impacted his severe pain. The fentanyl does that, with reasonable consistency and efficacy. But there is a price which we are all paying as Segev's condition continues to deteriorate.
The return of double pneumonia, (which had been already been treated mid december) is exacerbated by the drying and cough suppressant effect of the opiate. Less coughing means the excessive production of phlegm remains in his lungs, lowering oxygen levels despite supplementation 24/7. His seizures are through the roof. This morning he once again entered status epilepticus (a life threatening condition where the seizures simply won't stop) and I resorted to sedating him with subcutaneous injections of Midolam (used as general anesthesia in surgery). It barely did the trick even after repeated use. 
We've been fighting to raise his oxygen levels since yesterday afternoon, with little to show for it. He has GI bleeding which is being treated. Only one lung functions and it too is becoming tired. But yes, he has much less pain. 
Sleep comes in fits and starts as I launch myself from bed every twenty minutes or so, awakened by the sound of the oxygen alarm or the sound of him seizing. His upper airway is collapsing and he stops breathing every so often until I pull his lower jaw forward to allow air into his lungs. Even then his oxygen saturation remains low. His ability to regulate his body temperature began failing a few months ago. His skin is burning hot but the core temperature is steady. He's drenched in sweat most of the time despite fever medication thrice daily. His bladder doesn't empty and I resort to manual pressure but this only helps when he is conscious. The last time he smiled was ten days ago, maybe more.

January 5th

For the past 18 years I've only worked two days a week, the rest caring for Segev. I feel crushed under the strain of providing care and pain management to my patients while suffering further from my own health issues, once again nearly collapsing to the floor from both physical exhaustion and chaotic emotional state...

How, under an even more complicated regimen...  

We discuss the options; a tracheotomy to help with the increasing upper airway constriction. The downside is his slim chance of surviving surgery and the inevitability of being on a ventilator if he does. The ventilator might help him, giving his body a reprieve from the effort of breathing, since over the last two weeks he is mostly dependent on 'abdominal breathing'. Imagine that every breath you took, every single one, was as difficult as sucking mashed potatoes through a straw. Now add all the other problems. But a ventilator (if we were ever to get out of the hospital) in my son's unstable condition, presents its own difficulties and drawbacks. Whether infection or him possibly ripping it out of his throat during a violent myoclonic seizure, to the technical issues of making adjustments to the ventilator itself when the conditions inside of his lungs, where the altered biomechanics and severe infection will have you chasing your tail every minute of each day, appears an even darker path.

... all options have always been openly discussed and decisions are formed in consensus, each adding their own perspective and concerns, while our beautiful little man sits in his chair, oblivious, each slow breath counted.

I admit to myself that I am less capable. Segev's brother and sister are rallying, as always, and I simply could not do without them. By myself, stumbling dizzy from bed to grab the suction catheter or grasp his flailing arms as he seizes, continuing throughout the night with interpulmonary percussive ventilation, nebulizer inhalation, respiratory physiotherapy and administering sedation that further suppresses his breathing gives diminishing returns. And now we find ourselves in a maelstrom of confusion. The complexity, the interactions. Because you simply cannot know.

From the corner of my eye I can see my kids struggling under it all and I think to myself, will the good also be remembered? Will this give them tools few have, or break off pieces never to be found again? What I do know is, I am grateful and we cannot navigate any better than we have done.

The focus now is to make the best decisions, or more precisely, to live with the consequences.

January 09, 2016


Once again we find ourselves in the midst of a true crisis. The kind where you simply don't know if things will sort themselves out.

There are many different kinds of seizures, but the ones you fear the most are the brutal myoclonic tonic ones that ragdoll your kid with such a violence, that your heart breaks looking at it. When this happens despite all the medications, the CBD and the Cannabis, despite all the careful chest physio, despite the Fentanyl and analgesics, as though the hand of God grabbed your child by the scruff of his neck and went to town with a vengeance.

After one, your so glad it's over, you forgive everything and bask in the calm. But when it comes again and again, and again you become frantic. You give more THC but it is without effect. Then come the extra doses of Clonazepam. And again. And again. Still with no effect. You try Diastat. Finally, emotionally raw, shaking, you see some improvement. The seizures have stopped, after hours of hurt.

Now the differential diagnosis: is it a side effect of the opiates? Too much CBD? Pressure on the spinal nerves overloading his system yet again. These are important since a decision has to be made, what to do to stop the cycle.
It's time to move on to the next problem; 18 hours have passed and he hasn't passed any urine. You palpate and feel his distended bladder pressing against his abdomen. You press and massage, trying to wake him so that he can be aware of the pressure and maybe, just maybe he'll be able to relax the sphincter and pee.

It's two thirty in the morning and you've been working to stimulate his bladder for two and a half hours. But he won't react, even to pain stimulus. Oblivious, he lies on the couch bathed in sweat, your hands probing, cajoling, telling him ten thousand times, 'Segev you need to pee'.
Everyone is called, his sister and mother come over, to help and also make sure I'm thinking clearly. Everyone agrees this is all the result of a severe pneumonia. You bring him, with your own twisted and sprained back, to the bath chair and dowse him with warm and cool water. Still nothing. It's three thirty in the morning and finally he pees, nearly twenty four hours since the last time.

A sigh of relief. You continue the nebulizer therapy, the Inter Percussive Ventilation and the chest physio throughout. His oxygen saturation finally stabilizes. At four you climb into bed, the monitor beeping softly next to you and you fall asleep looking at your son's labored breathing an arm's span away.

Then at six O'clock the seizures start again. More diastat, more clonazepam. But you know it won't be enough. The seizures are no longer seperated by an hour or even a few minutes. He's spewing phlegm with each forced breath. The seizures, massive myoclonic-tonics, turn his lips blue despite the oxygen. They are continuous now, he can't catch his breath.
A phone call to the hospice physician means help is en route. Segev enters 'silent status', he's still seizing but you can't see it unless you know what signs to look for. Another hour before the doctor, out jogging when you caught him, will arrive.

Subcutaneous midazolam is injected and we wait. Another dose and another 8 minute wait to let it seep into his blood stream. Segev's eyes are moving a little less randomly, he is coming out of status. Antibiotics are administered. Hopefully the antibiotics will work. The twitching won't stop until his lungs start to clear over the course of a few days.The seizures, the worst we've seen in many years, should follow suit.

January 07, 2016

I, the aging caregiver: Introduction

Aging is a relative process. Being vain enough to think that I have aged well, until I look in the mirror, has long ago been replaced by the realization that the accumulated mileage is no longer covered by warranty. Coming up on eighteen years of caregiving for my son, it hasn’t always been easy, heck, it’s never been easy. If not for his smile and the twinkle in his eye when I sing to to him, (well cackle like a hyena is a more apt description, but he loves it!), I wouldn’t have been able to give one hundred percent. 

Of course, what was one hundred percent a few years ago is pitiful when compared to today. It’s not much of a paradox, the fact that the more you give, the less you have to give. You need to pace yourself for the long run, but to begin with you cannot know how long that will be and so you give it your all, hoping the long run will teach you to balance your own needs in face of your child’s. I never found that balance, and yet in part because of that, my son is still here. 

You’re not supposed to have regrets, so they say, and while hindsight is useful as it can teach us about the future, I wish it could have been different. Now, that doesn’t matter anymore. Now each day the wear and tear on my body tells me, you gave it your all. I find solace in that, where a few short years ago, I couldn’t. The only thing that mattered was making sure my son was comfortable for the next few hours and those few hours would build up to form an unbroken chain until we reached that mythical goal where he felt comfortable, happy, protected for most of the time. 

This life though, with a fragile child who was given no chance to live, is not a story of continuity. Not a race to the finish line in a sports car. More like a leisurely drive through the country side in a broken down jalopy and you have no real idea of where you are headed. You learn one thing for certain: if you put it in your mind to reach a specific destination, you will never arrive there.

It appears you can strategize, and you should, but you can’t plan. You react to situations and your ability to preempt will bring momentary triumphs, but any preconceptions about how your life with your children will unfold, is soon exposed for the fallacy it is. 

You readjust, you compensate and as far as the outside world is concerned, you put a smile on your face. You accept. You may balk at this idea; the world should know that your child is suffering, but no one is interested in that. They want results, they want positivity. Sometimes you care what they think and on occasion you think, ‘to hell with them’. You have to be true to yourself and to your mission, to provide loving care, a stable environment, that safety for your child to get the most out of a short and hurtful life. In short, you offer them protection. That becomes your meaning. Your child’s meaning lies within showing you what purity is. What the basic element of a profound life is, that unconditional love. How far you take it, is entirely up to you. 

Obviously, the more you go to extreme lengths the more you’ll feel it, as time carries on. You learn to find joy, continually, repeatedly in simple things exactly like when a baby smiles for the first time, coos for the first time, giggles for the first time. You find the ability to remain surprised, the ability to remain in awe and bask in happiness each time something good happens. You become a little bit like your child, discovering that happiness afresh, each and every day, as though time has wrapped you in a cocoon, a stateless mind where time doesn’t exist.