The well is deep

For a brief  period

there was a religious woman who came through social services to help with Segev. She had the right spirit but no direct experience with a child like my son, although she had several children, one of whom is somewhat disabled and another with more serious, autistic spectrum issues.

We had several attempts at discussions about ethics in general and of disabled children but the religious aspect of her persona was rather overbearing. If every opinion you have stems from a quotation of a religious text, no matter how wise, I tend to lose interest eventually. Everyone can quote scripture, but to develop your own opinion about troubling issues and be willing to discuss them lends a necessary authenticity to the encounter. Her heart was in the right place though and she actually came up with some unique and practical suggestions for Segev, even going so far as to berate a social worker for not activating all the resources at her disposal in order to ease our daily lives just a little.

Besides also running a pizzeria and working in a hospice she volunteered for the rather macabre duty of washing the deceased, as per Jewish tradition. I believe some Christians do this as well. The first time I encountered such a practice was in a book by the Flemish author Hubert Lampo, entitled “The return to Atlantis” where the main character, a physician, describes the ritual washing of his mother after she has passed, while “unused vials of morphine stood on the nightstand”. I was so taken by his book that I contacted him. After being impressed by the sample I sent along, he authorized me to translate his book into English, but I was already deep into my studies of traditional Chinese medicine and never completed more than the first chapter.

In the intervening years I came to see up close the moments prior to death for a number of people. Their breath slowing, becoming barely noticeable. After one particular experience I realized that whatever identity we hold, it leaves the body before the physical shell actually reaches the endpoint of biological presence, after which I have found myself on several occasions leaving, by chance or design, before that last moment occurs.

I was involved  up to that endpoint, both in a personal manner and as a professional, to relieve suffering. I’ve also been witness to my son slowly decrease his breathing until finally, without any resistance on his part, there was no longer any discernible movement, only to act quickly, on occasion frantically, to revive him.

I have sat, as in the past few days, compressing his chest and back hundreds of times between my hands, in an attempt to compensate for his insufficient breathing, to expel the buildup of CO2, to expel phlegm, to circulate air into his collapsed left lung.

He is breathing quietly now, lying on the couch with his monitor and oxygen after a long day of taxed rapid respiration that had me thinking very decidedly, ‘how close is the end, really?’ I asked my eldest, as if he could have the answer, “is there something else I could be doing?”

For hours on end I must watch his upper chest sink inwards due to the extraneous effort to take a breath. There are other options, none of which strike me or his mother (at least there we can agree on something) as viable.  Thinking about these things do not see me make less of an effort to bolster his health. It is hard to explain unless you yourself have had to wrestle with these moments.

You can never truly be ready, never understand the meaning in the moment until it happens. Just as during the times that I have had to resuscitate my son, or make decisions to change the outcome of a life threatening episode, sometimes having had luck on my side, I know there will be a similar moment of intent and action but where, like that which occurred for children similarly afflicted, my decisions will no longer have any bearing on the outcome. I hate that moment with all of my heart. Not because it will be that catastrophic moment when I finally and utterly fail my son, that moment has already come and gone, but because it is an end which comes to my son vaguely, brutally and dishonestly, without him being able to understand. Without the knowledge of saying goodbye. I’m not talking about the closure of those left behind, that ego-driven but excusable need for us to tie off ends so that we can feel more comfortable.

But for a boy who has “slept his life away”, barely conscious for the better part of his fifteen years, filled with pure emotion and expression of love when ‘present’, the last greatest triumph would be, in my eyes, to acknowledge the connection with those that love him and that he loves, even if in the context of ending that connection on one level. Spirituality is a pauper’s kingdom, when knowledge of connection is implied, but not visible to the naked eye.

When my mother passed away I was airborne flying back to Israel and yet in that one particular moment I felt her hands press on my shoulders and her lips kiss the top of my head. When my mother-in-law lay dying on her bed I saw the faint outline of her body hover over her though she had not yet taken her last breath. But immediately I left her and went home to tell her daughter to rush to her side. I came every day to my patient’s home to treat his pain but simply did not show up that particular Friday morning that he passed. 

Watching my son breath with such effort is hard in the extreme. Opinions about what can be done differ and there really is no right answer. Despite the morose subject matter I am not giving an inch of resolve here, merely expressing the feelings that arise from the aftermath of long hours treating and waiting. Nothing has changed and so I try not to dwell on feelings of inadequacy, mull over mistakes or grow stagnant from frustration.

“He’s been taken good care of, you can tell”, the head of ICU told me during his surprising visit to my home.

“How do you know?” I asked him.

“His skin, see how well his skin looks. You don’t normally see that in such a sick boy.”

Segev

Day after day,

the level of anxiety has been considerable. Since the last time I posted there has been no steady reassurance of resolution to his double pneumonia as his oxygen parameters refuse to stabilize, dipping both suddenly and violently.

As of now there is nowhere to anchor a stream of thought in order to categorize events or form a strategy. Seizures follow no pattern and thus confound finding any source. His temperature is regularly lower than normal and it is often difficult to tell whether he is conscious or not.

It is certainly tempting to throw everything, every form of treatment, into the fray since uncertainty, including the reaction to the dangerous antibiotic, manifests itself everywhere. Juggling so many medications, precise feeding schedule and extensive, hours long physiotherapy in the face of his baffling interconnected array of clinical signs and symptoms on a continual lack of sleep may perhaps create strong fears where there need not be.

Segev’s brother and sister regularly endure these situations of alternating calm and hysteria, exhaustion and exhilaration, rapid intervention and absentminded lethargy. I wonder what they will make of it all after they have gained the experience in life to give form and perspective to these endless days and nights.

Another kind of moment

It is understandable that there seems to be quite a contrast between the rough sentimentality of the previous post and what is happening now with my son. But in actuality it is the dense yet fragmented understanding of his precarious life that brings with it a searing beauty.

Already on the 20th of April Segev had shown signs of his lungs acting up. I applied a scopolamine patch regularly to try and dry his endless lung secretions. My concern, discussed with the CF specialist in Jerusalem was that in drying you could create less salient pockets of bacteria, growing in force, as opposed to the constant stream of phlegm, taking with it the bacteria's foothold. The professor concurred that it was a solid assumption but that in practice they did not see such cases.

Well, now they have one. Testing his phlegm Pseudomonas A. was found but his clinical picture looked good. His oxygen saturation during this time was higher than since before last year, as long as he was on 3 liters of oxygen and so, as was done many times before, I decided we would weather the storm without antibiotics.

Fast forward to some truly beautiful days with Segev languishing in a quiet civility, troubled by seizures and pains, yes, but all in all, much more relaxed.  Then a few more days, warm and dry days here in Israel, and the lethargy struck this past Friday morning, together with high fever, rasping breathing. 

I removed the patch and began antibiotics, thankfully already in house, but Segev sank into the destitution of oxygen deprivation, quickly and surely, with the previous day's conversation with the pediatrician, my chirping "Oh yes! How well he is doing these days", still fresh in memory.

Fourteen hours of near constant treatment. The entire arsenal of rubs and ointment, medication both proven and not, the constant vomiting of anything that went in, the aggressive fever which relented deep in the night only after two remedies were used concurrently, in addition to the removal of clothing and damp towels spread over his body.

Going to sleep for the first time ever with the alarm of the pulse oximeter set to a measly 87%, because it was no longer possible to regain the ground lost and hospital, discussed so often on these pages, is a case of either the proven scenario of undertreatment or the intubation and, according to half a dozen top experts, one way ticket to an accelerated demise.

Hardly could there be a situation where no one answer was more correct than others.

Now, Tuesday, he is stable. Already since yesterday no fever, the combination of treatments and antibiotic appearing to work. How do I know the scopolamine patch was, while not the actual culprit, one which must be regarded warily and thus used sparingly? In the endless number of lung infections there is always a pattern where by the time the lethargy and somnolence begin to give way ever so slightly, Segev begins the serious work of expelling liters of congestion from his lungs, which did not happen here. Simply too dry. Double the number of nebulizer sessions were needed and still very little movement in the lungs, his saturation hovering at 89-90%, without correlation to the amount of oxygen supplementation (6 liters/min added nothing).

There is a definite increase in seizure activity, possibly due to the kind of antibiotic (ciprofloxacin) but the vomiting has begun to subside and he is reacting more each day. In between all this I still had to work a full day on Sunday, since landlords wait for no man, nevertheless cancelling my last patient in order to return early (9 p.m.) and assess and address (an hour long series of treatments) while he was at his mother's, till Monday morning. Each day, in this life, I look toward a small measure of expectations which can be reasonably met, and give thanks even when those expectations are not realized. To say I am not happy about the whole thing, would be an understatement, as the expectations of my normalcy grow more subdued and distant. To remedy this I am looking for help on the outside, contrary to my nature, and surprisingly or not, publishing the 2nd volume of poetry feels like a step forward.

Healing, empowering, thriving.

This brings me to my friend P. Dzialo and his long awaited return to the world of bloggn'. Of course each one of us has their own reason for using, or not, this particular form of expression. A form that, in many cases, entails sharing of personal issues as well as thoughts about it all. For me what is personal and what is private became rather blurred as this hermetic life nearly became a fait accompli until I realized I was, after all of these years,  in the midst of a real life depression. The realization in itself was a marker that the turnaround had already begun (apparently without my prior knowledge or approval) and as Phil has done for me time and again, especially with his latest post, I look towards friendship and support to keep the story going.

In the moment

I just realized something, about Segev, about our moments together. It came as a soft call, like a voice amongst the trees, that Segev knows he is loved. It came at a moment when he woke with a seizure, as he always does. Whenever he transitions from sleep to wakefulness, and often the other way around, when descending into deeper sleep, he has seizures. For years I believed that like his many other fits, with this seizure he was not conscious, until he started to move his locked eyes to and fro. That was always the signal. 

I know about the different types of seizures, where a person has conscious knowledge of the experience. But over the years, and only quite recently, have I begun to understand that at some point, even before he regains control, while he is still thrashing about in rhythmical jerks and forced expulsion of air between clenched teeth, he is becoming aware.

For a few years now I have been talking to him during this, from the first moment the seizure grips him, “Hey, Segev, hi” I always begin. “You’re having a seizure, waking up. You were sleeping and now you woke up with a seizure”, I say to him.

Then that moment came when I thought, perhaps he can already hear me, and I try to give him reassurance that all is well. Of course most of this reassurance is for me. He knows nothing else. It has always been this way for him, waking with a seizure, it is quite normal and thus nothing to get excited about. I hold his flailing arms, not to control them, I move with him, just as one does in T’ai Chi “pushing hands” exercise. I go with his movement, but slightly, lightly direct them so that he does not injure himself, does not scratch his face or eyes, bang his arms against the armrests of his chair.

I see something in his eyes, a recognition as I softly tell him that I am there, that I am kissing him, that I missed him while he slept. Wishful thinking? But it struck me so hard, not with that yearning feeling, that near exasperation, “I hope he can hear me!”, feel that I am there, but rather; here we are Segev, you and I, together. That’s all there is at that moment, nothing more and nothing less. Because there was always more. I wanted to do more, for his wellbeing, his comfort, but it’s alright, we are just there, together. And there is no less, not enough; not enough connection, communication. There is just being there and passing the moment, with him knowing and with me knowing, that this is love.