February 28, 2011

Resign

Stay positive. If I have to tell myself that, I'm in trouble. To be positive, to meet adversity and seek out solutions is part of the nature my parents endowed me with.
So when I found myself thinking, 'stay positive Eric', while in hospital with Segev, it carried the quite serious implication of finding the very foundations cracked.

For a moment I thought perhaps the experience in hospital of waging a battle of wits under the crushing weight of little more than three hours of sleep every twenty four hours, had traumatized me. Not only the uncertainty, as per usual, of doing the right thing or of whether Segev was going to make it, shook my confidence to its core. 
Because what shook me so much was the realization that adapting yourself to that system is liable to get you killed.  



Once you are placed in a mammoth system that sustains thousands of individuals in elaborate processes on a daily basis even patience, even knowledge, even a pleasant demeanor will not alter the movement of one tiny cog in the machinery. What is relevant is only what the system allows to be relevant. 
I did not lose my faith simply because physicians or nurses did not agree with my take on things - I got a few things wrong and learned from it to be careful in reaching conclusions, understanding context better -nor because this stay in hopsital was without a doubt the most physically and emotionally draining of many serious stays over the last thirteen years. When explaining the need to be extremely diligent in investigating what is wrong with Segev I often received as reaction a lack of interest, skepticism, as each specialist looked within the scope of his expertise, limited by youth or ego and I found myself on more than one occasion saying, "Just how much more do you think Segev's body can take?"


I lost my faith because over thirteen years of hospital stays, after over twenty years as a healer, the number of people I have run across who put their heart and soul into their activities can be counted on the fingers of one hand. And without that dedication, the perseverance which furthers, the less of ego, the desire to learn and accepting our mutual dependence, we are lost. We are blind. 

February 23, 2011

Meta

When you look at a situation or incident and it would appear to you that a part of it has leaked out, as though your assessment of what it is, what it means, how you connect to it has somehow become less and you know that there are implausible amounts of grief heaped upon your consciousness, that this perception must necessarily be untrue.

When you build up a system with meticulous care that allows you to control your environment, to establish order and set chase, eradicating error and misjudgment to a point where you are satisfied a modus vivendi has been created, there is only one inevitable outcome. All your efforts are merely a prelude to a cacophony of disruption, anguish and anger, even though not fueled by hope, full of trepidation, retraced steps without retraction of consequence.

When you hold strongly to your vision and see clear as crystal how things should be, pressure will build until that crystal is cracked like a sintering crust underfoot and your confidence is threatened to shatter, at the very least you are shaking and feel to falter on this long hard road, this journey to stay whole.

When you cry  seeing your son lying serenely sleeping, the only perfect peace he knows, when you cannot understand how he has persevered, despite mortal blows.

Then that flavour and colour that you so proudly felt well up as a child, bold and adventurous, finding value in all things, pales and bows, one knee on the ground, afraid to look up and see eye to eye with fear.

When you challenge life it answers that challenge. When you will not back down, your back will be pushed against a wall, your legs broken and asked if you will yield. When you challenge life you better know what your asking for because you will receive such as you request. 

When you look for rhyme or reason what will you say with empty hands when you are bereft of understanding despite knowledge and experience and your only recourse is love?

When you love, whether you can understand it or not, describe it or not, are you satisfied that you are doing all that you are meant to do? Or is knowing that this question exists, realizing its importance, as far as you can go? 



February 16, 2011

This will probably give you a headache

Segev has improved, though he seems caught in a rough spot of vomiting due to lack of coordination in his breathing/swallowing. The viral pneumonnia is running its course, with less wheezing and phlegm, good saturation.
  
When you try to find the meaning in everything, you come to believe that there is nothing mundane. A rock is not a rock but rather it has an intrinsic value of the forces of nature that shaped it, the many uses it can be put to, the symbolism that endows cultural values.
When you are driving, to wherever it is you are going and you automatically ask yourself, 'where am I going in life', you are thinking like a philosopher. Philosophy tries to describe the value in all things, the conditions by which we can see meaning in anything, connecting us to the intricate mechanisms of nature, through a framework of understanding.
It is strange then that this describing stands in contrast to pragmatism but as nature would have it, always thinking in circular motion, understanding and action can come together, existing simultaneously in what some call the zen state, the Krishnamurti moment, where conflict can no longer abide.

In taking care of Segev my frustration comes on the one hand from not being able to do more for him but defining what is 'doing more' is complex. There are always the physical aspects, bodily needs of health but especially the consuming issue of dignity which strives to preserve the ability of a person to live within the assertion of their Will.

I have done what I can do for my son, but life is much larger than just this. Each of us have responsibilities that extend beyond our idealized margins. It has not escaped my attention that somewhere in the back of my mind I have always wished to create a sterile existence for my son, one where the amount of suffering is controlled and subject to clearly understood mechanics.

There are many things which I lament not having done with Segev. I am not referring to teaching him how to ride a bicycle or watching him laugh as he shouts, 'push me higher, daddy, push me higher' on a swing. When the lake has dried up it hardly serves us to hunker for the gaiety of splashing about in the water.  

The things I haven't done, what I have left out almost in its entirety, are the very simple things that would have filled Segev's life with more meaning than the quiet drifting off of thought or sensation that is wont to happen when he is not disturbed by discomfort or pain and yet let alone without distraction.

Although I cannot recall how long it took me to teach him to stick his tongue out it was not an effort that saw me impatient from repetition. The point was of course not to teach him to stick his tongue out, although he may get some satisfaction from discovering, yes discovering, that he has a tongue and that he can move it, however rarely. 
The point has always been to see the measure of understanding which he has which then allows you to build, slowly, his world, filled with small gestures, increased awareness perhaps or increased methods of communication. More interaction which opens the door to more experiences which can give him satisfaction as frustration is clearly not something he is equipped with. 

Without the myriad distractions and considerations that a regular person has, Segev's experiences are absolutely pure in connection. Knowing this perhaps has made me hesitant to explore more avenues of discovery for him. But I also enjoy using the excuse that his condition requires constant attending to. Relieving discomfort or pain and slowing down his decline are without a doubt an obsession for me.  
Finding a balance between his physical plight and the manifestation of dignity, true understanding folding itself into action in the same moment in space and time, feels very precarious to me. 

Looking for meaning in all things and how they necessarily relate to one another? And yet the answer must be right in front of me. 
Isn't Segev the answer to the most important question I could ever ask myself? How do I fit in is that question, isn't it? And he speaks to me with his simplicity, clear as crystal. This peeling away of the proverbial layers of the onion ends with being left with nothing. You remove layers, finding meaning, until you find your cute little logic has enveloped itself and it's time to start all over. But before you ever started peeling the layers away it was already an onion. You'll never get a better understanding than that; that a thing is what it is.
Segev's nature is to be who he is. I cannot take anything away from that. Though more importantly if I believe my own words of indomitable spirit, neither can anyone else. So why continue the struggle? Why fight on, besides the obvious, that we are programmed to do so?

Again I come back to the frustration, because you can realize what your weaknesses are but know that you are not able to compensate entirely for them because that's how you were made, flesh and blood, not some ethereal spirit.
The sterile life I mentioned earlier is, of course, an illusion. The concept of order is subject to perception. The best thing we can do is conscientiously acknowledge our nature, but more importantly, how we are part of a mechanism of nature where each part has its role to play.
And Segev's role? No grand prince of evolution. No monarch of a lost tribe of sentient beings. Just a little boy, squashed like a bug by accident, through no fault of his, adding a particular tone, a masterful brushstroke, to this tapestry.

February 13, 2011

Broken?

I stand before you a broken man. Well, not exactly. What some have actually failed to realize is that the title of this blog does not refer to being broken but rather to being broken down, psychologically, pieces and elements becoming visible during duress which allow us to see the glue that holds us together, which is normally unseen.

If there is one thing I have learned from these devilish experiences it is that the spirit cannot be broken but that fatigue goes a long way in allowing you a peek into the innards of your psyche.

So no, no I did not pull a 'cool hand luke' here. I did take Segev out of the hospital though and brought him home. I wish there was some interesting drama in that last sentence which I could share with you but there isn't. Although I did see a few scenarios pop into my head where there was confrontation and even shouting as I wheeled Segev out of hospital, cursing over my shoulder. But everything went quietly and with surprising efficiency as I made my decision to remove Segev to a safe haven after the morning rounds did not reveal any new direction from the physician's and I made an impromptu rendezvous with the attending, Segev preceding me in his wheelchair like a war chariot. She agreed that there was nothing holding us there any longer. Just the opposite; Segev developed phlebitis in both of his last two intravenous sites, necessitating their removal and further limiting the ability to intervene medicinally. So this last exit was quite the denouement.

Final diagnosis is RSV virus resulting in bronchiolitis. This comes after the gastroenteritis virus gained from the first stay and the Status Epilepticus which started the hospitalization which was caused by the diarrhea and vomiting caused by the Flu and the antibiotics which was implemented to prevent a bacterial pneumonia.

Segev is improving or at least has the appearance of improvement. All that hard work over the years, in order to keep his weight up, his circulation tenable, his lungs functioning, have paid off. He survived it. But there shall be no rest in this real world of tough decisions and unforgiving circumstance. The show must go on. And this is not to say I am not tired. I feel the quivering weakness in my bones, literally. I am nauseous from fatigue. Food tastes very bland, lights seem to shine strangely, making it difficult to see. I went to do shopping while Segev is with his mother and stood at the supermarket counter for so long deciding whether it was roast beef or corned beef that I should get that the woman was giving me a strange look. My feet shuffled through the familiar aisles and this familiarity allowed me to complete the shopping without getting lost to peculiar thoughts vying for my attention. "I know this aisle", "I need to turn left now", kept me going.

February 12, 2011

Good news?

I thought that i had slipped up. Segev's lungs were crystal clear after the first week in hospital thanks to aggressive inhalation therapy and antibiotics. But they put us in the 'stomach/lung virus room', where all the kids are coughing and vomiting and suffering diarrhea and guess what, that's not a bad way to get any or all of those viruses, in succession.
After the release Tuesday morning Segev was already cooking the stomach virus and with the inevitability of one of Claire's posts on culinary eroticism Segev was sick as hell with cyclical vomiting before I could even settle in at home. But it is not so easy with such a neurologically compromised child, determining whether it is a virus or degradation of his general condition which is responsible. 
Then came the release on Sunday, glorious Sunday. Now I started feeling the fatigue. Headaches became intolerable, I was feeling tired all the time, chills. Two days later Segev began vomiting again in earnest. By Wednesday night he couldn't keep 10 cc's of water down more than five minutes. He had a fever, which hadn't been present all the previous days in hospital, not even ten days prior to the hospitalization when he had the flu and was non-responsive for eight days. Yet when I took him to hospital the first time, he was not dehydrated and seemed to recover.
So the second virus, now established by tests to be RSV, caught sometime during the second half of the stay made him vomit, run a fever and become limp. 
So imagine my surprise when I take him to the ER after another sleepless night of administering to him and the doctors don't understand that I want them to help him. He doesn't need help, he needs some losec, they insist.  

The vomiting continues but this time the blood results come back without signs of medium severity dehydration. I insist that Segev is not 'right', that something is still lingering, perhaps irritation from the G-tube or any of many other possibilities and that some investigation should be done. One of the ER physicians whom had gotten to know Segev during the previous 12 days hospitalization happened to be there, had seen my dedication to Segev and agreed that if I felt he needed the stay in hospital that was sufficient reason.

Last night, the 24th day of not being well within the span of one month, was very difficult for Segev. As I arrived I ascertained his arm to be swollen from a defective iv placement necessitating its removal and placement of a new one. The long thick needle was pushed in but only a fishing expedition finally brought the desire result. I've lost count of the number of iv lines introduced, but it lies somewhere around ten.

His breathing was massively labored, the wheezing severe and his lungs obstructed to the point that when he coughed no air could be forced out, his face turning blue from the effort. Any cough also resulted in vomiting so once again he could not receive any food. I gave him his medication in moments of relative quiet, with little adherence to normal scheduling but still he vomited part of it.

He was very agitated and clicks and jerks of seizure activity was nearly a constant as he wrestled his way through the night. Oxygen had to be kept at 5 liters a minute in order to keep his saturation above 90%, a degree of compromised respiration which he has never seen before. His rapid breathing and racing pulse, soft rasping moans of pain and twitching finally relenting for short intervals of rest when I could quietly contemplate the origin and consequences of entering day 16 of this hospital stay. 

This morning the result of intensive therapy, both medical and physical, have borne fruit as he reacted a little, the fever has remained low and his breathing is more normal. Each time I lifted him up to a sitting position, leaning against me as I half sat, half stood to work on his chest and back with clapping and compression, the utter exhaustion of every fibre of his body was apparent not only by the dead weight he presented me with, like trying to hold on to an over heavy slippery bag of potatoes, but also in the very sound of my cupped hand rhythmically drumming which sounded, again, like hitting that heavy besotted bag. 

Unfortunately, having nights means taking a nap when returning home. The trip on Wednesday morning to ER meant pulling another '53' . Being awake Tuesday day, not sleeping that night, then leaving the hospital in the afternoon to take a one and a half hour nap, go back to the hospital and spend the night caring for Segev (oh those darkened corridors!) until the late morning. I have yet to break the three and a half hour mark for a nap and so for the last sixteen days plus have had to make due with up to those three and a half every twenty four hours.
Other than my children I have no family here which could come to my aid, which is the universal law of you reap what you sow?




Tomorrow morning I was supposed to fly to Holland, a ticket arranged through miles by my father, to be with my mother for three days. Over a month ago, with everyone pressing me to go, looking for ways to make it feasible, I worked out a schedule with the kids. They would miss school (my son is in his senior year), we established who would be on night shift duty at their mother's house to help with Segev, the workload was divided and promises made. Everyone was pushing for me to go. My mother said how much she was looking forward to seeing me (she has ALS) and I wanted to be there for her. 

The ticket, non-refundable, will go unused and perhaps there will be another opportunity some day. I have to say that I have been dreaming lately of going on trips, discovering new experiences, calm yet exciting views, something which has not appealed to me for years.
But the funny thing is that whenever I have had these fleeting images of going pop in to my head, whether remembered as a dream or spontaneous fantasy, I've always seen myself going together with Segev.

February 10, 2011

not to be believed

Segev is back in hospital since 05.00 this morning. Don't know what to say, no words. It looked like slowly he was recovering (as was I, the emphasis on slowly, aches pains, headaches). Then Tuesday afternoon again he started with vomiting which worsened Wednesday and finally at 03.30 in the morning I said, 'that's enough' and went to hospital. Five and a half hours of doing nothing in ER, finally admitted, at my insistence, and still did not connect him to fluids or give anything against the vomiting.

A child in Segev's condition who has been vomiting heavily for two days, vomiting off and on for the two days previously, hospitalized a few days prior with medium grade dehydration which started in hospital, who hasn't held down more than two good meals in two weeks, living off of dextrose 5% via iv and yet they wanted to send me home with losec.
His blood work came back fine, his oxygen (except for an episode yesterday) was fine, bloodpressure 'fine' (high for him), mild fever (38.5C), pulse and respiration, fine so I overheard two doctors asking, 'why are we admitting him?' EVERYTHING IS FINE that's why he can't stop vomiting his antiepileptic meds or anything else entering his stomach. 
Am I losing it or is this wrong? 

February 06, 2011

Home?

finally able to have Segev sit in his chair after a week in bed

Everything gets written down to double check doctors and nurses and our own memory. This is one and a half days worth

Segev's sister amazing in her constant help

Not 100% but much, much better

waiting for the release letter....back home!

February 04, 2011

No strength for emotions

Gaunt is the new Happy

I spent the night again, without sleep of course, because when I arrive in the morning it is difficult due to traffic to get to hospital in time for the morning rounds. This was a bit of a rough night for Segev, but the pain medication does help him.

There are several theories flying around; some physicians are leaning towards either developing or functional bowel obstruction while others cringe when it is mentioned. It still isn't clear whether the severe dehydration already began in hospital or was a direct result of the cyclical vomiting of Tuesday. 

I can feel certain things wrong with Segev but it is rather vague. The medications also mask some of his normal reactions. He has moments of wakefulness but is for the most part non-responsive, despite not being on any consciousness suppressing drugs. 

His ketogenic diet, so narrowly and precisely administered, keeping him from seizing, is out the window because of dextrose in his continuous iv. Paradoxically he is not seizing but this is more disquieting: he has been seizing every day of his life since the day of his birth and he is non-responsive to unseen-until-today levels. When the doctor took blood this morning, incising a vein on his left arm for the seventh time this hospital stay, Segev did not react in any way. No seizure, no startle from the pain, he shows no sign whatsoever of arousal from his nethereal slumber.

He is getting double the amount of fluid he normally would get.

It could all just be a convoluted construct of coincidence, what is happening to him. He could have caught a bug and gotten gastroenteritis in tandem with the diarrhea from antibiotics. There was most likely not enough fluids given him during the hospital stay. There is evidence of reversible  kidney damage. His very low potassium level may have caused the appearance of a developing intestinal blockage. The bizarre lack of seizures, which would make a normal parent jump with joy is simply sinister. Every day a new cycle of shifting doctors and nurses juggle the facts of Segev's condition and come up one ball too short. Reports are poorly kept or incorrectly presented. Information is discarded as useless within the narrow spectrum of investigation.
If the very description I am giving of the situation appears cryptic, imagine the swirling multitude of medical practitioners who see nothing urgent about Segev's condition.
Certainly my own level of perception is occluded by sleeplessness. 

Segev's stomach was quite hard. That is, for him. It wasn't as though his stomach was a piece of granite, but certainly a very drastic change from his usual stomach. I called the doctor on duty in for a consult. After palpating his stomach she pronounced it 'completely soft'. 
It is a regular state of affairs for me to palpate Segev's abdomen upwards of thirty times each and every day. In absolute terms she may be right, but the context is change in Segev's condition, even relative to the ten days in hospital. This was lost on the doctor.

So, there is really nothing new to report. Patience is something I have little of when it comes to my children's health. Everything right now is a question mark, open to interpretation. I am making decisions, changing certain small things, instilling, I hope, a sense of concern in the medical staff, without coming off as hysterical since with Segev the swing of the pendulum can be catastrophic.




Everyone of you knows the inside of a hospital is the last place you want to be. It's depressing, dreary. The antiquated state of the childrens department in this particular hospital contributes to this feeling. Every day is long, long hours of watching. Every day new faces come and go, the noises of babies, children, complaints and machinery constant reminders of ill health.
Cracks are sometimes visible in my mind: driving home in the rain in heavy traffic, maddening callous drivers cutting me off I think, 'fux it, I'll crash into him to show him what an idiot he is.'

I'm off to the gym for the second time in a month since I simply cannot sleep yet. I seem to need much less sleep but then it shows in the pictures that this is an illusion. Perhaps the ship will right itself again, as slowly and surely as the pull of gravity, leaving me to wonder what the hell this was all about. If I feel any more on an uneven keel, I'll let you all know so that you can berate some sense into me.

February 03, 2011

Murky

There is no more clarity in Segev's condition now but there are positive developments. Segev was very dehydrated of course from the continuous vomiting over the space of nearly 20 hours. Because the dehydration already started in hospital, (he vomited first time monday evening before the tuesday morning release) despite intravenous fluids, we could have saved a lot of suffering and the detrimental effect to Segev's health if he had not been released.
His dehydration was severe and now thursday morning he is starting to at least react again, complain and the vomiting has become significantly less. On the other hand he hasn't had any nourishment in his stomach for over 48 hours. Momentarily I will hear the latest blood test results and this, coupled with the fact that he had a bowel movement (after repeated attempts at stimulation according his regular method) will determine if we are to begin giving him something to nourish his depleted body.

I would be going crazy undergoing what he does. Just looking at the physical suffering that he is able to bear is mindboggling. He does not even cry any longer when he has an intravenous line inserted into his fragile veins. He has had four in one arm and three in the other, plus separate veins for ad hoc blood tests.

I've had a little bit more luck in communicating with the physicians which I welcome, even having an impromptu personal chat with one in the middle of the night where I was able to articulate a little bit the importance of perception and dedication in caring for Segev. 

At the end of the day this experience reaffirms my belief that craziness love, strength, dedication and sensitivity will get you very far but that you also need luck. Several staff are marveling at the 'luck' that Segev is so unbelievably strong. How much more can he take, though, is a question I have come to ask both of myself and publicly.

It is too soon to tell if he is improving and I cannot say I have a good feeling about this but in all fairness my intuition, when burdened with such fatigue as only two hours of sleep throughout the night will bring, is most likely not functioning.  Never the less I am not occupied with dark thoughts, only practicalities for the moment.

I have kissed Segev a million times and passed on all the wishes for well being he has received from you all. He has quieted down in my arms and I stand over him watching him sleep, with only wonderment in my eyes.

February 02, 2011

fubar

I arrived home with Segev at 12.30, a little late as I had a chance to speak to the pediatric lung specialist who was by chance checking in on Said's boy before his procedure to cauterize his trach and whom I have been in contact with on and off over the years, about a lung vest for Segev and its availability here in Israel.

After less than three hours home Segev began a cycle of vomiting and urinating blood. The vomiting came within a few minutes of anything entering his stomach via the g-tube, even 10 cc's of water. Is it a neurological cyclical vomiting? I don't know and apparently there's not much to do about it.

More suffering for Segev. After several hours of this and trying to keep Segev's anti epileptic medications in his stomach long enough for some absorption to occur it was time to head back to hospital via the emergency room. Against my better judgment there was no ambulance this time.

Once there we were neglected as Segev continued his vomiting, depleted of fluids since the last thing he held down was some water at two o'clock in the afternoon.

At two o'clock in the morning, after three hours in ER, we were finally admitted to the same ward we left that morning.

I spoke to Said on the phone, his son had a complete heart block at the beginning of the procedure and is on a respirator in pediatric intensive care, his body cooled to 34 degrees celsius to preserve as much neurological function as possible since the resuscitation took eight minutes.

I spent the remainder of the time suctioning Segev every half hour as the vomiting continued throughout the night  and until I left hospital at ten o'clock to get some sleep. Now with three hours of sleep under my belt and some food in my belly I will try and manage a few things about the house and in the hospital, by remote, until I take up my post at ten.
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