January 30, 2011

Said and me. Father of five, full of love for his devastated son, brother-in-arms

Noa has been an enormous help each day, coming by bus from school or with rides to be at the hospital

Finally some reactions. Also complaining from pain, more mishaps but much fewer seizures
More of the same today: improvements with small setbacks. One of the children in the room developed chickenpox so Segev and our neighbour, both seriously at risk children, had to get a special vaccine of antibodies through his iv. Blood pressure measured every ten minutes in case of an anaphylactic reaction. One iv in the left hand, one in his right hand, turning him over this evening with Noa's help, the 'faucet' connector got caught and bent backwards so it was ruined and had to be removed. Fortunately they stopped the intravenous antibiotics because the bacteria found was not Pseudomonas as well the steroids have been stopped and so only the sedation iv is needed.  His lungs are very clean and there is only the regular rasping that has become like music to my ears, signifying Segev's 'normal' breathing pattern.

He is getting back into ketosis while his soft moans of pain and discomfort definitely pinch my heart each time but at least he is trying to communicate. From a complete lack of activity his bowels, due to the antibiotics are, shall we say, overactive.

I was even able to put him, with all his iv's, in his chair for a bit, trying to even out the pressure on his body, for so many days crassly chained to his bed by medical tubing and it seemed for a while as though things leaned more towards normality and less towards the severity of the situation.

To sum it up there is improvement and he no longer appears to be in danger. The horrible experiences of hospital stay perpetuated through the numbing effort to convince and cajole, argue and suggest, question and answer. It will only add to the emotion of a future stay, just as the previous adventures have but I am so getting ahead of myself.
Watching the boy across from Segev bleed profusely from his tracheotomy has filled me with fear about such a procedure for Segev.

I'm ready to take him home because really, there is nothing at the moment that can be done for him and the sooner he is back in his natural environment and his baseline, the better I'll be able to assess how this life threatening incident has effected him and whether that affect is permanent or, worse still, that this episode is a sign that he is deteriorating beyond the point which I have tried all these years to keep him from.
I am not searching for bad things but I have to maintain the right sense of perspective if I don't want to lose anguish to despair. 
I never want to despair and this can be accomplished by having a good sense of what is coming. Despair robs you of your ability to function and I will not give in to that.

But, again, I don't want to get ahead of myself. Segev has improved and will likely come home in the next few days. Then I will be able to concentrate on worrying about lost income and unpaid bills since the word respite may as well be something from a Tolkien book. 

What I mean by that is not to sound full of self-pity, but rather that it has apparently come to the point where self-preservation is going to have to take precedence over what has been my priority until now.

I will end by saying that I have never in my life had the experience of being drained and wrought with worry  yet felt suddenly a sense of greater calm and due purpose come over me, which I have no doubt, comes from the concern shown by many, something which simply has not existed previously in my life.

One Moment

There are only a few minutes now to write but I will try to update from hospital if the situation allows.

On the television hovering over the entrance to the shared room, now filled to over capacity with five children, people are watching tensely as the events in Egypt unfold.

Segev began to wake up, which should not be happening while under sedation. My mind works as follows: something is wrong, what is it? I looked at several possibilities. The day before yesterday the same thing occurred and was due to the fact that two drugs were rund on the same iv, one an open flow and one a slow continuous drip. In the battle to enter the vein, guess which one dominates in such a situation? There was backflow preventing the sedation from entering his veins. I caught on to that but yesterday they had already established a second iv site (the fourth one since wednesday morning) so that couldn't be it. Scanning Segev's arm I could see, with difficulty because of the bandaging, that his arm was swollen: after finally getting hold of the doctor via the nurse she concurred that 2 + 2 = 4. She then proceeded to place an new iv site high up on his forearm, exactly where you would grab his arm in automatic fashion when Segev begins flailing and then nearly pulled out the iv herself because of her coarse coordination, being stopped by the attentive nurse assisting her who had the same line of sight I had and reacted before I could exclaim more than, "careful!"
Then the young doctor proceeded to try and remove the old blocked iv by pulling on the heavy duty tape on Segev's hand. She pulled sideways, instead of gingerly holding the iv in place with counter pressure and tore, albeit a tiny, hole in his hand, that immediately began to pump blood, despite being a vein. After ten minutes of applying pressure it was still bleeding so I sat with one hand holding the blood in, allowing it to congeal while I continued suction and oxygen with the other hand.

Out of time. 

January 29, 2011

How much?

I simply cannot believe how much can happen in one day at a hospital. The boy across from Segev has a bleeding tracheotomy. They scheduled a procedure for him on monday, meaning he has to be one week in hospital, out of his regular environment waiting for the laser surgery. Today a nurse did suction and he started bleeding profusely. When I left Segev now, it was still bleeding, his father frantic, alone all day and night despite having family.

He seems desperate and close to the edge, nervous. Exhausted he collapses next to his son on the hospital bed and I woke him because his boy was having a seizure. He went out for five minutes and again the boy was seizing, having trouble breathing. Nurses no where and the anguish on his face when i told him what had happened in his absence. Family comes for a quick visit of twenty minutes and again he is left alone. I overheard his conversation with a doctor on the phone: I'll give you twenty five thousand. In cash, and another twenty five thousand later. In cash, if you'll sign the medical affidavit.
He is apparently trying to get compensation for the atrocity perpetrated on his son.

Segev was seizing every four minutes. You can set your watch by it. 120 seizures resulting in a complete cessation of breathing every twelve hours.

I had a discussion finally with the neurologist. "I'm not certain that that's a seizure" she said to me. Every four minutes his shoulder starts jumping, then his arm, then he sticks his tongue out more than is humanly possible, yet the tongue is limp and thick as you try and push it back in between his teeth so that you can push upwards on his jaw so that towards the end of the seizure he begins breathing a few seconds earlier from correcting the spasm that closes his throat and turns him back from a dark purple to pink but she thinks it's not a seizure, every four minutes FOR 36 HOURS. 
But I keep my wits about me and go at length into an explanation of the massive history of Segev.
"Yes but when were those video eeg's done?" She asks.
"I want to increase his keppra further" she says. "Is this going to help the status" I ask, stating that I haven't read any research connecting the use of keppra with status epilepticus. Doesn't the dosage max out at 1800 for Segev's weight? I ask.
"We have children on a lot of keppra", she answers.
I really have to control myself not to fill this writing with an expletive every other word.

Now, at 11.00 this morning Segev's seizures appear to have stopped and I say appeared with some emphasis since he is very heavily sedated so what was once a massive seizure now has the appearance of a small twitch. The point being if you can recognize that twitch it means the process causing him to be in status is still present. 
Every hour there is a problem. One medication (steroids) runs quickly in the iv, displacing the sedating drug. The nurse wants to stop the sedating drug to let the steroids finish. I veto this and say we can't stop the sedation after having finally gained some seizure free time and start all over again if he begins seizing again.

But it doesn't matter since the counterflow from the steroid stopped  the sedation from entering Segev's vein at the proper rate and he begins waking up.  I look at the flow rate and it shows movement. But then I look at the infused amount and I see that it has been showing the same for about an hour and a half!
Segev is stretching and yawning like he is coming out of an afternoon nap.

The seizure free period comes to an end at ten in the evening.

He hasn't had a bowel movement in three days and I remind you that the surgical constriction of his stomach to prevent vomiting became undone, so the threat of vomiting from intestinal pressure, even from gas is a daily occurrence when he is healthy, never mind now. The physicians reaction: "Well, did he vomit  today?
He is no longer in ketosis. I work to try and get him to have a bowel movement to no avail. He gets a catheter since he no longer passes urine freely.

I ask for something prescription to help him defecate because even after minuscule feeding three days is too long. "Perhaps we will wait until the morning to see if it can happen naturally" is the doctor's advice. I'll give you natural. I'm a frickin' naturopath lady!
Here's a child with severe multiple neurological deficits even affecting the autonomic nervous system, completely sedated where having a bowel movement requires some cooperation on his part. How will he 'naturally' empty his bowels? Reverse osmosis perhaps? Their drug of choice has lactose and sugar in it (osmolarity), while I'm trying to get my lactose intolerant son back into ketosis which demands an absence of carbohydrates

I'm sorry for this jumble of loose update scraps. I am tired and upset and need to get some sleep. Tomorrow morning will be better. Segev will make it through, he must. Despite everything I am thinking of others as well, those I know who go through hardships, via their blog and am humbled by the wave of suffering I see in the hospital each day.

January 27, 2011

It surprised me to realize that I actually had convinced myself that I could keep Segev out of hospital.The flu ravaging his already deprecated lungs and body last week, the vomiting and to add the antibiotics purging qualities, combined with the continued use of the ketogenic diet's oily base made it impossible for his anti-epileptic meds to find a foothold in his body.

It looked for a few moments that Segev was improving but that was not the case actually. He even had three hours at one time without this unique and new seizure which would see him turn blue each time, coming with clockwork precision at either 3, 5 or 7 minute intervals.
Segev seized at these intervals for 31 hours these last two days and once again I am home for a short respite. There is no doubt this is physically the most demanding thing I have gone through with him, having been on my feet for 53 hours with only the one and a half hours of sleep yesterday afternoon.

In hospital, both between staff and staff-patient, the miscommunications come fast and steady, like a stream. Things are also done because it's time, not because of actual need.
Nurse: It's two o'clock. We either have to restart the valproic acid drip or the midazolam drip, you can choose which you think is best.
Me: No, actually we can't start just because it's two o'clock because we've need to see whether the pause in seizures for the last ten minutes takes. I need another 15 minutes to assess the situation.
Nurse: Oh.

Doctor: I understand there has been some improvement?
Me: For the past hour, since the dosage increase I requested was approved, he has been seizure free but this came after 31 hours of seizing.
Doctor: Yes, well these things take time.

Time is not something we have the luxury of wasting. Time will make its own accounts if we are not careful. Fortunately I have watched as the worst nurses did not take roost in the room Segev shares with three others. The ones I've dealt with are open enough t listen and in the end the appeasing statement, "well you know your child best" is heard often.  
In the room there is the happy normal five year old boy across from us who came out of an operation four and a half years ago with massive brain damage due to a lack of oxygen during the procedure. I've never seen a human beings limbs move as fast as a hummingbirds wings until this morning when he had his morning 'shakes'. Next to Segev is a tot who sounds like someone is drowning her at night, while her father snores the entire night away not getting up once as she cries and sputters, moaning in agony.

His iv line was accidentally pulled from Segev's ultra fragile veins, twice.

Not praying, not crying, just resting.
The kind of environment we all fear for its noise, infections, shared bathroom, poor ventilation, smells and a complete lack of being able to maintain the myriad treatments and adjustments that took years to learn and implement which keep your child in a reasonable condition.
It feels, and I've already mentioned this, that I'm slipping up, exactly as the buzz in our friends' blogs have been speaking of 'extreme parenting'.

Segev was having his dosage increased to sedate him further as result of the consultation between the ward physician (general children's ward, there is no pediatric neurology ward) and the chief pediatric neurologist (who hasn't seen Segev since actually taking in the being of a patient in such a condition is, as we parents all know, detrimental to the decision making).

I'm on both sides of the coin, as therapist and as parent so I can understand, also having worked extensively with physicians and in hospital how it all works but these slowly turning wheels are exactly why I never pursued further employment in such large systematized settings.

"These things take time", while you see the staff chatting in the corridor about a reality television show. "These things take time", since "right away", "immediately" and "i'm taking care of it" are all well known euphemisms for "when the planets align".  
Don't get me wrong, a lot of the work is done well, though rather harshly, but this really highlights how when we talk about physically and mentally compromised children not getting their dues in the education system or proper care management, we can just as well speak of what's wrong with the care in hospital's for most patients: the system doesn't like individual needs. The system allows many many people to be helped at a mediocre level but all the corners are rounded, the edges filed down. In short, when you are vulnerable we haven't figured out yet how to properly take care of you.

Going back to hospital in a moment though I won't stay the night unless I see his condtion has not stabilized as a result of the upped level of sedation. Having slept for nearly four hours after "The 53", as I will remember this most recent stint, I still don't feel up to snuff but it will have to do.
The father of the boy across from us, by the way, spontaneously came to me and said, a little nervously, "My God, I thought there was no one else that takes care of  such a child at home. Finally I've met someone else who goes through the same thing I do."

January 26, 2011


I slept for one and a half hours after coming home from hospital, I've prepared two ketogenic meals for Segev in case it seems pertinent to give him as the hospital does not have a ready made ketogenic meal for lactose intolerants.

The ambulance ride to the hospital is always the same, like in a movie, only minus the rain. Time always slows down so that it appears to take twice as long.

Now, at home for a few hours of rest out of the danger of collapse, I've not much to do besides scour articles and research to see that I didn't make a mistake and that I have the necessary confidence backed with data. I need to write a bit because anything I don't write now will otherwise be gone.

I've already made a different kind of mistake, quite big, in that I have the cellphone number of the pediatric neurologist and didn't think to give her a call.
I was up the entire night, the seizures beginning around midnight after a beautiful day. A gift of a day, where I saw Segev bloom; smile and react after this grotesque two weeks of ill health and fatigue.

His seizures did not react to treatment of any kind. They started coming every few minutes.
I don't want to go into the treatment at hospital for now because it might turn out to be very frustrating writing about it; I need to stay calm and focused. Screw that.

Segev's condition is not yet improving and I have been able to change some of the treatment; what really appear to be just nuances but without which the direction can head down a perilous path. This is no over dramatization.

The newer younger doctors are tough and I am a bit older and much more tired this time around. If they sense you are trying to lead their thinking somewhere they immediately pull out their bag of dirty little tricks, "but you're not a doctor are you?". "Remind me again, who are you?" "Just because we find bacteria in the lungs isn't an indication to start antibiotics, you know that right?"
Just a few of the gems. I have to repeat myself several times to the same person in order to make things clear. They go off and make decisions but my intuition tells me something is wrong and I run after them and then have to be very diplomatic in again opening the topic of discussion to ascertain whether or not they really digested the factual medical information I just gave. They didn't.

So it is going. I am more calm than I thought I would be but this is merely will power, I feel the urge to shout. After a discussion the medicine is decided and the physician disappears. I speak to the nurse and she knows of nothing. "But I just spoke to him and he said he would write the order". Puzzled looks. "I'll check". After twenty more minutes of Segev lying convulsing, purple the nurse gets back to me. "It's being ordered now". 30 minutes later, stern inquiry on my part receives, "the pharmacy hasn't authorized it yet". In the mean time the neurologist arrives, is convinced to add another drug and two hours later it arrives, Segev still seizing.

How can I write any of this I am asking myself. I want to scream, but can't let myself. The only path here that will help Segev is if I put my mind in sync with the medical staff who are part of a system that has schedules, rules and dozens of patients to see, milling about, moaning, seizing, burping, stinking. A constant maelstrom that they have to negotiate according to protocol and all in good time so they can do their job without having the urge. To. Scream.

My daughter informs me that there is now an astounding 10 minutes between seizures. He has been seizing for 16 hours so far.
We are all doing our jobs as best we can and then we say, yes I say, Inshallah, God willing because we have to admit, there is more going on here than we can control.

January 25, 2011

That's enough thank you very much.

I looked down at my feet and saw that I hadn't had time to tie my shoelaces. I was groggy, although the word 'delirious' seems to me to be a better fit. When you are woken from a deep sleep and called into action.

And it's not that she doesn't know what to do, Segev's mother. I'm sure that if you were to quiz her, given enough advance notice so she could prepare, and given enough time to answer, she knows what to do.
But at that moment, Segev having a third episode in two hours of simply and quietly ceasing to breath, all blue and 'ragdoll', there is no time for prep, only for action. By the time I arrived though the nature of the seizure had (thankfully) changed into a cluster fuck of myotonic oblivion, one seizure becoming the next with no respite. My daughter was operating the suction.

In North America you call it diastat, rectal valium.  I barked orders for  Segev's mother to get it but she couldn't find it at first; once again that strange phenomena occurred where, in her house, Segev's things are always located in some magical hiding place.

Running is a good thing in situations like that. Some people are not built for emergency situations. Let's leave it at that.

Segev required monitoring and oxygen and I stayed on to make certain the bizarre and life threatening central apnea seizures did not return. I can recall one other episode in the last year that was similar, but still different enough that there probably is no connection.
There is a connection to strange facial twitching that Segev has started to exhibit. He also gets yawning spasms, just like my mother, due to damage to the nervous system. The last time he had central apnea was in 2006.

Yes I'm worried, but probably should not be. The new 'What will be will be'? I can't do anything about it. Didn't I just say I can't do anything about it? I mean, in the previous post? I have to learn to keep my mouth shut, or to stop being superstitious.

Tomorrow morning I will pick him up, all being well.  Time for sleep now, if I will be able to get to sleep, worrying if I will get another call.

*second call at 02.00

I'm thankful the valium is still a workable option. I've been there many times that I had to resort to midazolam, the problem there being that, as it is meant to be used as injection, the viscous drops are poorly absorbed through the nasal arterioles. There is no proper midazolam spray available here. Wracking my brain to think of hospital options-nearly makes me nauseous every time I think of the 'wars' convincing physicians from previous visits to even do an eeg or call in a neuro consult. They've never even heard of Ohtahara.

** Third call 04.30

 *** Fourth call 08.00. There till nine thirty and then home to shower and prepare to take him to hospital. After enough sedation to bring down a male African elephant he is still having major seizing activity, though with longer intervals. Is this good or is this a sign he is entering silent status epilepticus? Pulse is good, oxygen (with supplementation) is high, blood sugar is good (low would be a bad sign). 

At 10.00 I'm back ready to call an ambulance; his mother tells me he hasn't had another seizure since the last double dose of midazolam and diazepam. I sit and watch him for another 15 minutes and see mild seizure activity, but not the same one's as before. I pick him up and he reacts with a pattern of movement, weakly, but that he does when bothering him in his sleep. This is a good sign. If he were simply unconscious he would not have that reaction.

He is with me and I am watching him like a hawk watches its prey. He is jumping strangely in his sleep, shocks of movement like a regular person might but more volatile, repeating itself, sometimes accompanied by a groan of sorts. 
Keeping watch. 

January 21, 2011

There is a hole in the bucket, dear Liza

I thought I would chime in.

We can talk about many things when a parent is the main caregiver of an extremely mentally and physically compromised child. There is philosophy, ruminations, discourse.
At some point we must speak from our personal experience.

friends  by Noa Fischer

I have come to read a wide variety of blogs, quite often ones where the mother blogs about her 'special needs child'.  I read those blogs to try and keep some perspective on the real world. To see lives where there are certainly added difficulties, but where there is still the pattering of little feet, words and conversations. Laughter and understanding in ways that most people are used to. Not constant illness and the trepidation of death.

If there is any justice in the world, I will outlive my son. 
I like thinking that he will somehow improve, somehow get over his insurmountable lung problems, his flaccid paralysis, the missing bit and pieces of his brain, the deficits in his autonomic nervous system. But he won't.
He may surprise me and survive yet another case of pneumonia, his lack of coordination in breathing may stabilize for a while as his seizures are better controlled and he may even gain some control over his sight, but the big picture of death looming, looking over my shoulder, waiting for me to screw up or if not, simply biding his time, still remains.

I'd like to be able to say that isn't what I believe life is about and that I seek to fill every conscious minute that Segev has with something positive. I'll say this, I'm never automatically doing things, attending to his many and complex needs. Rather always testing myself. To see if I hadn't forgotten something, if there isn't another way of doing things. But I've undergone a slow yet forceful and thus very noticeable change.  I could feel it happening and it has made me very uncomfortable.  As it came to a head during the last two weeks, having been exhausted, I have no doubt my raging reaction at the equipment failure (which cost me my voice for several days) was the culmination of this dreaded realization.

I have come to believe, after close to thirteen years of caring for him, that I am doing everything that I possibly can for Segev. I have given it my all.
I was continually driven by the knowledge that there is always something lacking. Much more than the obvious, that there is something I haven't discovered yet; rather that I simply cannot do enough. It is not healthy to be driven like that though. 

This new feeling has been gaining momentum for the last six months or so, long before his last brush with death and is more troubling since I have been able to predict, vaguely, Segev's major incidents in the past. I have always known in advance that he would end up in hospital, before any signs were visible of impending crises, for example .But in all honesty, one of the influences on this new realization must be that I have a sense of him slipping between my fingers.

change by Noa Fischer
I found strength in two things these last two weeks; one I've already mentioned and remain grateful for, the people who felt it right to encourage me and tell me that I should remember one thing especially, that I am not alone in my understanding of this utmost difficult journey of Segev's.  The second thing is my intuition, which has now once again let me know certain things which I won't repeat here due to superstitious beliefs.

I don't know how hard it is to imagine these circumstances of 'extreme parenting' or to understand them. Actually I'm not sure it has anything to do with parenting anymore, just as an extreme skier has little to do with the many average people who enjoy swooshing down the slopes once or twice a year.

The situations I come across might translate to other situations after all. Many people are involved in actively challenging themselves to the point of risking death on a regular basis. The sport of formula one racing comes to mind.  It seems that a great deal of our leisure time and money is spent in watching other individuals participate in very dangerous past times. We pay money to see two men beat each other senseless and marvel at people jumping out of an airplane in order to make acrobatic maneuvers in the sky, all the time thinking, 'well I hope his parachute opens'. Aircraft acrobatics, mountain climbing. Drinking dangerous amounts of alcohol.
It seems to me that we are quite obsessed with our ability to push the limits of what is possible. We marvel at people who survive catastrophic events. But this continued obsession causes me to conclude that, while it is apparently our DNA which makes us do such a thing, to better understand how we can continue to survive under hostile conditions (yet to come?), we don't seem to take away from those experiences a greater appreciation of life. A need to slow down and enjoy normalcy. Because normalcy is boring. Mediocrity is a poison.

Well my son is not mediocre. And his life is filled with drama and death-defying stunts, close calls and even temporary reprieves from the greedy hands of death. His extreme life is hardly television fare because the soap opera hasn't been written yet which would come close to describing what he has gone through. It wouldn't be believable even if it were written.
And it's not very interesting since we want to see a man survive 127 hours in a canyon in the desert. On the other hand we love a good tragedy. But with Segev I don't see the punch line. A good tragedy has to be filled with irony.
Somewhere I once read the difference between tragic and tragedy: A man walks in a field and escapes the blazing sun by sitting in the shade of a large tree. But dried out by the sun, a large branch falls on the man and kills him, that's tragic.
Now the same man takes shelter under the same large tree which, being dried out from the sun, loses a branch, landing on the man and killing him. He was under that particular tree though to meet his secret love with whom he planned to escape the tyranny of her father and start a new life abroad. That's tragedy.

Can you imagine a television program called survivor which follows the life of several children like Segev, to see who lasts the longest? Is this line of thought getting too macabre? Where does he fit in though? In this society. Why isn't he the subject of intense interest since he has all those elements present that we are obsessed with? Is his suffering not great enough? Are his smiles not endearing enough? The surprise of his eyesight could be teased for months in advance and draw in great ratings.

Of course there are places on earth where popular western culture is not the mainstay. Where they don't even have televisions. But then many places also don't have the luxury of the medical treatments which along the way have saved Segev many times. In those other places, Segev would certainly not have lived more than a few months.

This piece though isn't about decrying the trappings of modern western pop culture. Technology, well-being go hand in hand with the luxury of giving in to our need to satisfy pleasure and curiosity, since survival is a moot point. Except for children like my son. 

How do extremely compromised children like Segev find their niche? I think the problem lies very simply with the fact that if there is no way to fix it, no way to solve the problem, all interest is lost. Because telling the tragic tale of Segev and inciting 'ohhh's and ahhh's' is not helpful. 
So if there is no solution that will fix the problem of Segev's mangled existence then at least we need a message, a little gem of a sentence that will embody some pearl of wisdom.  I think I know what that is. But I'm not certain many accept it. I think that gem is that these children need to be nurtured and cared for. And their progress reported in the news, the same way as sports results are. Because the fragility of their existence is one of the most extreme endeavors on the planet.

January 18, 2011

I have climbed the mountain

Eight days


It seems you can never get used to the emotional impact of almost losing your child no matter how many times you've found yourself in that position before.


friends  by Noa Fischer

This is the first time in my life that I was able to actually use the friendly energy bestowed upon me to help me. There was never a doubt that I would let myself be destroyed in striving to help Segev in such a critical state. I might come close to faltering but for the first time I was able to focus positive feelings from others and use it for my personal well-being. I stayed focused and fought with myself to rest when the agitation of worry made it nearly impossible to do so even after nights without sleep. 

For this I feel gratitude towards those that sent me their wishes for safety and health, thank you.

My post 'This is how we roll' is just a list, which of course does not contain a great deal of little details that make up the constant attention Segev required. The day described was absolutely one of the easier ones. Segev had just become ill and I couldn't know to what degree his illness would develop. 

All of last night Segev was still on Oxygen. With catnaps of up to ten minutes each I attended to his needs throughout last night, as a culmination of eight days of care. Treatment and inhalation after inhalation, physiotherapy and of course endless suctioning, his nose bleeding, still fighting for breath and having learned these past eight days to stop himself from coughing because it was so painful, and then finally at seven o'clock in the morning the moment came when he mustered the strength to displace a serious plug of mucus and began choking on it. Finally the "big" release that I had waited for and lethargic, with eyes having difficulty focusing, I suctioned as I have been suctioning all his life, all that night, but something was wrong. Nothing seemed to happen and Segev sputtered and choked. I called out for my eldest and he came immediately. While Segev couldn't breath I thought the tube must be blocked by mucus, it can't pull it out. I had to stay concentrated on Segev's mouth which by now was oozing part of what he was choking on. To add to my fear I couldn't tell if he had vomited as well. I shouted, 'it's not working, it's not working!'   Fortunately Shoval is trained and bent down to the machine, finding the tube had come lose and reconnected it. 

I didn't start screaming until after I finished clearing his airway. It was cursing but also a kind of primal scream. I let off some steam, none of it directed at a person, least of all Segev, but rather at the fucking equipment and the irony of it failing at that exact moment.

©2010 Noa Fischer

This morning Segev is doing so much better; he is reacting and without oxygen for the first time. Just now he has shown me his first smile after being unconscious for nearly the entirety of eight days and nights, with barely a few sparks of consciousness alighting to give cause for optimism.
Now it seems already long ago, though the ninth day has only just begun. The feeling of relief I have is powerful though without elation.
I know that in general Segev's condition continues to decline, there can be in his case no other outcome. His body steadily grows weaker despite titan efforts to slow it down.

This experience has shown me that my abilities are not what they once were. I have the fervent desire to learn from it in order to be more steady the next time. 

January 14, 2011

It's up in the air

Since Monday morning I have felt a pressure grasp my heart, gently squeezing my chest and has made breathing more difficult.

In the balance.

A poor Segev with a lifetime of experience in lung infections. Colonized by Klebsiellla and Pseudomonas, even candida. 
Oxygen marker low, fingernails turning dark, breathing rapidly, unconscious.
Heart rate at 170, fighting.
Twitches never before seen, the sound of effort in breathing. 

Again and again I question myself, my knowledge and experience, is this the best that can be done? The dozens of scenes in hospital running through my head, fighting, convincing nurses and technicians, physicians until something finally gets done that turns out had to be done the slow wheels working, ponderously assessing, if at all. Convincing, arguing, consulting. Short asides in the hall where everything is decided in nanoseconds.
Can I wait for them? I don't think so. 


Fever, now the smell of acidosis. The use of bicarbonate. Moans. Difficult to concentrate on others. Work or perish. By hand. To mouth.

Coughing, from within the stupor, finally something moving. Day after day on oxygen. No smiles. And I know that if I don't stay calm I'll lose it forever. Sick myself.

The help of the children dresses my wound, obviously, because without them now I simply could not. 

To lose him now, I simply could not.

There he is! He begins to open his eyes for a moment or two. His heart rate drops to reasonable levels slowly. His breathing is a little less labored. His fingers regain their color and his breath is only that of putrid mucus but not acidic. His head feels less misshapen by internal pressure. His heart rate begins to flow even more easy. His temperature is controlled by medication. Some of the phlegm is even white. Slower, bigger breaths. Less twitching, more seizures as of old. Food stays down. Bowels gurgling. Less cries and moans. Eyes open a bit more.

January 11, 2011

This is how we roll

Segev has very poor lung function. After having attended to Segev for 48 hours, sleeping altogether 8 hours, I rested for one hour and set off to do a series of six house calls, covering 300 kms of driving. Segev's mum "was feeling better" and so I let him sleep the night there. The call  to rush over in the early hours, from my eldest, was expected. Next time and every time I will listen exclusively to my intuition as it has yet to fail me.
Every day it all gets written down. Here is yesterday and this morning:

06.15      375mg Paracetamol + Tamiflu               25cc
06.30      vomited
06.40      inhalation budicort, terbulin, aerovent, 23% saline
              125mg paracetamol
07.10      39.3°C
07.25      water                                                    30cc
07.35      38.5°C
08.50      37.5°C
09.05      Meds (lamotrigine, Keppra, Ospolot)       40cc
09.30      Vomited
10.00       38.1°C
10.30       Physiotherapy
               Massage eucalyptus oil, Homeopathy      40cc
11.20       Tea   (plain black)                                  70cc
                blood sugar:  136
12.05       Inhalation (meds)
                Tea                                                      50cc
12.30       Failed BM
13.10       Ketogenic meal
13.30       Vomited        
               Begin oxygen supplementation (sat. O² 88%) 4 liters
13.45       Physiotherapy  R9
14.15       meds (AED's) + Tamiflu                         20cc
14.45       250mg paracetamol                                40cc
15.30       Tea                                                       70cc
15.50       Inhalation + R9  Physiotherapy
16.10-      Food
17.00       Failed BM
1710        37.7°C
18.50       Vomited
19.10       38.3°C
19.40       Water                                                    70cc
19.55       Paracetamol  325 mg                               30cc
20.00       inhalation (meds) + R9  Physiotherapy
21.00       38°C
21.30       Meds (AED)                                           40cc
22.30       Tamiflu                                                   20cc
00.00-      Suctioning (over 20 times) Physiotherapy (2x)
06.00        position change etc.
02.00       Inhalation
04.00       Paracetamol
07.20       Inhalation (meds) + physiotherapy
07.35       Meds + mucolit + Tamiflu + R9               100cc
08.30       Failed BM
09.00       Food
09.15       Paracetamol

January 02, 2011

There is no such thing as disabled

I've gotten annoyed with the fact that labels have meaning in society which can negatively influence perception of those labeled. Probably nowhere is this more true than with "disability"

I'd like to illustrate why I believe there is no such thing as disabled. I'm not breaking new ground here but I'd really be interested in a reaction since many of the readers are themselves "disabled" or have "disabled" children. 

ability  by Noa Fischer

But first a little background. Growing up in Holland, where treatment (no reference intended to euthanasia here) of "disabled" people is quite advanced, they are referred to as handicapped. This is apparently no longer politically correct in the English speaking world, unless you are talking about the game of golf.

So we have disabled people do we? What makes a person disabled? Let's say there is a building, a ten story office building with twelve steps leading up to the entrance. Remember that, twelve steps going up to the door. A man in a wheelchair comes along and has to be carried up the stairs by passersby, good Samaritans, if he wants to enter the building. He is obviously hampered in his ability to enter, this makes him disabled correct? Wrong. This makes the building disabled.

Look at it this way; people, "able-bodied" are streaming towards the office building on their way to work, easily walking up the stairs to the entrance, taking the elevator to their respective floors, or in some cases again using the stairs.  Now imagine that same building with the twelve steps up to the entrance door removed. How would people get into the building? Since basically they couldn't we could call them disabled then as well. 

The stairs that they are using is a tool of assistance.  

There are actually office buildings without elevators so now imagine that this ten story office building didn't have one. There would be many people who would not be able, due to lack of physical fitness, to climb the stairs to get to their floor. So they are therefore to be considered disabled.

But of course we don't look at it that way. We don't think of an elevator as assisting us because of our inability to climb the stairs, our disability. But when it comes to a man in a wheelchair suddenly it is not OK to use an assistive device unless we label him as "disabled". Therefore his assistive device (a ramp) becomes 'special treatment' which requires special funding. We call a person disabled when actually it is relative to the elements by which we judge - we juxtapose disability on the person, from lack of true perspective.

Since a "disabled" person is not in the majority he/she is a minority. He is not average. But an average is made up out of all people; those more able  as well as differently able. Should we, in all fairness, make people who are not average yet more able, defer from taking the elevator and rather, have them sprint up the stairs?

How about we finally lay disabled to rest? I'd like to hear suggestions please. I'd like William Peace to put all 145 lbs behind this and chime in on what he thinks should replace disabled.

I looked at simply changing the spelling to dysability, but since dys still carries its meaning of bad or wrong, that won't work. Differently able. Different from Differe.

My vote goes for differabled (leading to the use of the word differability). I'm quite serious so please leave your suggestions.


The title of the post, Giri-Ninjo (人情 - 義理) is a term from Japanese culture, though certainly not uniquely so, which in its basic form represents the  dichotomy of Duty versus Heart. The necessity to serve or attend to issues not of our choosing against answering to our deepest needs and desires. Within Segev Giri-Ninjo acquires perfect harmony. Some times you just have to go Japanese in order to make sense of things.