August 31, 2010

May be difficult to follow the train of thought here

Segev is speaking;"aahhuuuuhuhaahhhhaaauhhhhhhhooehhwhuuuuuuuuaaaahhhhhhhhhuhhhhhhunhhhh". I'm sorry, I'm certain that looks terrible on the page but that is his typical run-on sentence. He speaks about twice a week on average. Mostly he is silent. When he does speak like that he cocks his head up and to the side, the long moan flowing out easily. His head goes down again as the moan fades only to strengthen once again and this reminds me of the rise and fall of a siren, a real siren, the like of which I have only had to endure on one occasion.

Where I live, a siren means imminent danger, seriously, as in missiles are on their way. That's how it was in '06 when I huddled with Segev on the floor and felt the walls vibrate as a rocket slammed into the ground two thousand meters away. There is a bomb shelter in the yard but you only have thirty seconds to make it. No chance unless you want to be caught out in the open when one hits. 
Some people say, move! If you really want it it's possible! You know what? I will actually consider it (I hear Brandon in Canada is nice). 

But consider this: how many years has it taken for me to build up trusting relationships with THE ESTABLISHMENT, to get Segev to where he is today? How can I know that such a dramatic move won't result in more harm than good? I don't, I know. But I don't like these either or scenarios. I choose to believe that sometimes you make the best of a bad situation because of the uncertainty. I choose to believe that once you make a certain decision you may just have to live with the consequences. I believe that sometimes, for some troubling situations, there is no solution.
From uncertainty it may seem like a short stroll to indecisiveness and from there to a dangerous lack of confidence to some, but I assure you it also leads to understanding.

Warzone: rules of engagement. 

Coming to terms with and understanding the nature of the problem that your child faces. Uncertainty 99%, certainty 1%. This is why you need to pace yourself. On the other hand certain decision must be made instantly. You will learn to either abide life-challenging decisions or not, which may determine whether your child will live or not. Hopefully these moments will be few and far between.

Congratulations. You have made it: your son is now three years old,  or your daughter four. You need a wheelchair now. It is no longer enough, the car-seats, the holding, the pillows and cushions. So now you have your medical committees. The local council's committee to determine that your son is eligible for transportation to the rehabilitation center. 
The ministry of social welfare has a health committee which must determine that your son is eligible for afternoon sessions at the rehabilitation center. 
The health ministry must determine if your son really needs a wheelchair and requires you to meet with their health committee. 
The national insurance ministry must determine the degree of disability in order to authorize financial assistance. 
The ministry of transportation will put you through a committee to determine eligibility of assistance  for purchasing the van you'll need to carry around the wheelchair. 
The ministry of education's medical review board will determine whether or not your child is eligible for special education at a rehabilitation center. Each committee requires Segev's presence.
Have you got all that? Now you can look to see if there really is a suitable place to take care of your child for a few hours a day. Nurse, doctor, hydrotherapist, physiotherapist, music therapy, animal therapy, the volunteers and the assistants. Do you have it all? To some problems there is a solution.

When I finally found such a place there was not space for Segev, quota met. So I had to wait one year. When Segev finally did get into the center it turned out to be a mixed blessing. Segev was categorized as the highest risk child in the center. I sat down with the doctor and we wrote out protocol's for all of Segev's conditions, without which they wouldn't accept him. 
After how many minutes that Segev appears to have stopped breathing but where tonus is still present may the staff call an ambulance without first notifying me? (Otherwise Segev would be rushed to hospital several times a day).
If Segev's oxygen level drops to X the following actions will be taken.  
Segev may not be put on to his back for more than one minute. And so on and so forth. 

In the end out of the possibility of staying six days a week, from 08:30 until 6 pm, Segev averaged* two days a week from 8.30 till 2pm and another one day that he made it to the center but within two hours I had to go get him. I only sent him when he was in good shape but as has always been the case his condition can go from quite fair to catastrophic in 60 minutes. More than once the chaperon called me from the transport van on the way to the center and i rushed out of the house meeting them by the side of the road to take Segev back home.

The committee for the health ministry, in order to get Segev his first wheelchair was the most fun. Across from us sat a woman, a neurologist, a man who was an orthopedic physician and an administrator. I was asked why we thought we needed a wheelchair for Segev. Read the medical assessment, I pointed out. Ahh yes, one said. There was a pause. Suddenly the woman, the neurologist, SPRANG from her chair, crossing the distance between herself and Segev, sitting in his carseat, in one bound and grabbed a hold of Segev's left leg. One hand on his thigh the other around his ankle she began to jerk his leg backward and forward with such violence that the car seat began to teeter on the chair. Segev screamed. 
Does anyone who reads this blog or follows Segev on Facebook still want to know how I was able to put in place the final rivet of absolute, interconfabulated steel-plated resolve into every pro-active decision associated with my son? Then look no further than that "neurologist".

There are problems to which there are no solutions.  

My fingers hurt for several days afterward from clamping them into the chair's armrest and until today it is a mystery how my body was able to instantly drain itself of all blood and restore it without actually losing a drop. 
Literally paralysed from shock i watched the horror unfold until the cold sweat on my palms and the force i was exerting caused my hands to slide dramatically forward off of the armrests.
I fought myself, not to strangle her. What good would I be to Segev in prison? 

"No, no, no the hysterical father overreacted to the examination. The screaming child? Obviously overly sensitive, we have protocol for these things you know."  No not actual statements made, of course, but certainly in the realm of the possible. Why not try? Because Segev sustained no permanent damage and I have better things to do with my time than being vindictive. That woman will either change or not and most likely it will take a child actually sustaining damage from her in order to provide grounds for her removal, if she does not merely get off with a severe reprimand. This is not defeatism, this is reality. 

To some problems the solution, is to move on to the next problem.


*Segev participated in the rehabilitation daycare for a total of one and a half  years, the last time being over four years ago. His condition simply deteriorated to the point that there was no longer an option to send him despite even having a nurse on hand specifically for Segev.

August 30, 2010

Prometheus? The beard of Zeus? Mothra!

I've let my beard grow in. I've had some form of beard since about 1990. When I meet with a patient they ask me if everything is alright. In the culture where I live here, growing a full beard often means someone has passed away. People have really had an expression of relief when I tell them, yes everything is fine.

I grew up in three different countries and moved from country to country six times altogether. Cultures differ. Here for example I have so often taken Segev out. Walks in the village, the dogs alongside and if smoke were still alive then you would've seen a cat walking alongside the wheelchair as well. Segev has even joined us on rare occasion to do grocery shopping. I or the children navigating the aisles with his modded-out wheelchair, suction and oxygen in the somehow strangely near-empty supermarket. Did people look at us? I don't know, my attention always firmly on Segev.
I did this so Segev, though not seeing and not understanding, could somehow feel a connection to something different. And most assuredly to show my other children that this is a normal part of life. Don't take for granted the attitude your children have towards an extremely handicapped sibling, it needs cultivating just like anything else.

Admittedly I myself rarely get out of the house, grocery shopping yes, a little work, yes, but I've never in the eighteen years that I am here seen other parents take their severely handicapped children out. You don't see them in the malls, the supermarkets, the movie theater, not in a hotel or at the swimming pool, nor in the city strolling down the street. 

In strong contrast to Holland. There I've often see parents with their severely handicapped children. You sometimes see groups of them. Everything is accessible, people will address you in the street and especially the child, knowing that they are human beings which need to be shown respect more than a regular person since their interaction with the world is already so, so limited. 

I even went to Holland in order to prepare to move my family there because of the fantastic treatment handicapped children receive. I was born there and so it was not too much of a reach. I visited centers there which every major city has, especially to treat children as severe as Segev. Have you ever come at the end of the strenuous work day to a rehabilitation center for extremely handicapped children and seen the caregivers smiling and calm, pleasant and patient, attentive? Yes it's like that there. Also you can be eligible for a "personal yearly budget", which is allocated specifically  for the care and treatment of your child. When I was checking that amount equaled 75,000 euro a year. You are allowed from that budget to hire yourself for three weekly eight hour shifts as your child's caretaker. You get paid to take care of your child since they realize you are not working full time because of your child. 
This is not how it is where i am now. Here the social system makes me eligible to receive help inside the home for the care of Segev when he reaches the age of eighteen. Since before that he is a child and it is only natural that child is taken care of by his parent! Really social services? Really?
As you can guess I never made it to Holland, c'est la vie. The weather there stinks anyway. 

Segev doesn't go out anymore. It's not that the equipment is too heavy, although I have to lift his wheelchair into the back of the van myself. It's not even that I think there is almost zero subliminal intake on Segev's part since he is most often unresponsive to any stimuli. It is because his treatment is constant.

Suctioning happens on average once every ten minutes if he is not deeply asleep. His airway gets blocked from mucous plugs several times a day. He has pharyngomalacia which  often necessitates physically holding his mouth closed so that he can breath. He has tiny seizures that cause him to lock up with his mouth open, arresting his breathing, in excess of fifty times a day. He has small to medium seizures another fifty times a day. His stomach doesn't empty as it should and builds up air which, if not released will cause him to vomit. So he also needs frequent Shiatsu treatment on his pyloric sphincter and pressure on related nerves.
His intestines move irregularly necessitating constant treatment throughout the day, especially since his intestines burst in three places in 2005, requiring cutting away pieces and resulting in scarring of the small intestine.
When his legs suddenly stiffen it's a definite sign he needs to defecate, which can come at any time of day. Often there is no sign but if you are not attentive he will vomit from the buildup of pressure. He cannot do it by himself, requiring pressure applied to the abdomen and stimulation of the sphincter with a flexible probe. 

Giving your child some water through his g-tube in the middle of the mall is one thing, but traveling for a picnic or any other kind of recreational outing with Segev requiring all this attention has simply become impossible. 

Many children reach this stage, where no matter how much effort you are willing to expend the risks of going out in public simply outweigh the benefits. 

You may come to feel that your experience of life has become truncated and you may find yourself isolated, because the severity of it all precludes a normal life. Precludes a large number of people you would normally interact with from being a part of your life. You may find yourself a planet in orbit around the greatest source of light nearby, which is your child. Yes, I sometimes feel like a moth attracted to the flame. That beautiful light, so irresistible. 

I've been singed several times although I'll leave it for others to say just what marks it has left on me. Of course you can see it differently; you can be a little more poetic. How does this sound, "you can see yourself like a form made of clay, baked in your child's furnace of  unrelenting care" ?
I cringe. I laugh. I will see you all tomorrow.

August 29, 2010

Zombie context

Every problem is one of context. When Segev was born I asked them to do an MRI of his brain and they looked at me like I was a four year old who had said something funny. "No, no Daddy (that's how they refer to the parents, mommy, daddy) MRI is the last thing we'll do, if it turns out to be necessary".  So you have a system that is in place that works according to protocol and must  process thousands of sick babies a year. What are the chances that that system will encounter a child like Segev?

I live by my intuition. The more i have learned to listen to my intuition the more accurately I have been able to solve problems and deal with difficult situations. My intuition said that Segev had a problem in his brain that was also effecting his entire nervous system. The assisstant head of the children's department said, "I think your boy is just a late-bloomer". I felt like I was drowning. I spent every free moment in the university bookstore medical section (latest books), 1998 not a lot of info on the internet. Segev would be bottle fed mother's milk and after one or two sucks scream hysterically for five hours non-stop.
I came up with esophageal colic. The neurologist told me that that doesn't exist. I told him i got it from one of the standard medical textbooks they teach with at the university. I told him if he doesn't believe me he can go look it up. Oh, but he shut me down, real good. He turned his back to me and from then on refused to speak to me or acknowledge my existence. No one spoke up. They complimented me on playing relaxing music in Segev's room though, brought some measure of tranquility, they said.

After two weeks of Segev's screaming the assistant head said, "I don't know how you can stand it, I would have thrown the baby out the window a week ago". Gallows humour. After a month she took us aside and said we shouldn't get too attatched to the baby (Segev still didn't have a name) and start thinking about having another child in the future.

Context. I wasn't hurt by her statement, I wasn't confused. I saw it from her perspective. I could see the system, with its slowly turning wheels, grinding some children to death, saving others. Segev was getting lost and I had to find a new perspective.

Since I was getting nowhere from the neurological point of view I focused on inborn errors of metabolism, mitochondria and whatnot. Several months later a sympathetic doctor introduced me to his boss, the head of a hospital as, "Eric is a specialist in mitochondrial myopathy". But as I learned more I understood Segev's context better, he didn't fit any of the known disorders. Many tests were done. Biopsies from his leg ( apparently there where no surgeons available so they asked one of the janitors to take it out with a spoon, the massive scar on his leg is still, well, massive) and anus. When they did the latter I got a very bad feeling in my stomach. I studied hard and went to the chief pediatric endocrinologist and said why are we checking this (lipofuscinocious) Segev doesn't fit it at all.

"We have to", she said, "go from A to Z". What?! She sent me to country's top researcher into that specific disease, far away. I sat in front of the doctor and she looked at the results. "Do you know why you are here, Mr Fischer?" I looked at her and said, "I have no idea whatsoever".
"Neither do I", she answered. "There is no reason why this test should have been performed on your son, he doesn't fit it at all".
Goodbye to the chief endocrinologist, hello context. Segev's context, of not fitting anything. Once you establish where you are, even if it is in the realm of intuition, you start to pick and choose, you start to know things. You start to become more assertive.

Like in cage fighting though you have to learn to cut off your opponent. Single dad ran into one of the zombie legion with his daughter recently (http://www.disableddaughter.com/?p=2810#more-2810) and possibly thought goodwill was raining from the skies. No fault of his, but never be lulled into thinking that those very few individuals in the medical system who actually do have your back have somehow infected their coworkers with this goodwill - they haven't, because zombies are immune.

If I appear antagonistic towards the established medical community let me reassure you with the following example.
Segev's haemaglobin skyrocketed as a result of the ketogenic diet (A treatment method I brought up 12 years ago with several neurologists. The answer was, "well, if that's the sort of thing you want to try, go ahead". Now it is the first thing suggested by most neurologists). I made an appointment, not so long ago, with the pediatric hematologist working in the children's hospital. I brought (train wreck!) Segev because I was certain there might be physical signs that she would have to see to confirm any possible problem. I explained that i was worried about the meteoric rise in the Hgb level. What did it mean?

She looked confused.  "Who came up with the idea that this is a problem?" I did. "Who are you again?" she asked. The father, I explained. I'm also a naturopathic therapist for twenty years, I quickly added. Silence. I'm responsible for Segev's care, I went on. She looked like someone had just stepped on her little toe but she didn't want to show just how much it hurt.
"You understand" she began, drawing out the "you" to place emphasis, "I am a regular doctor, I don't deal in alternative medicine?"
I swear I nearly fell off of my chair.

My "and" was long and drawn out too, "And you understand that the ketogenic diet has nothing to do with alternative medicine?" Oops. Akward pause. When she did finally speak she started a lecture on the fact that with children (in general) high hemaglobin is a good thing and never indicates a particular disease.

I'm not looking for a disease here, I said. Segev is not most children, I said. Skyrocketing Hgb came as a direct result of the diet, I said. What does it mean, I asked. Silence. We need to find out what it means, I pressed. "Well...." was the response. I tried to save her some grace and offered: "why don't you discuss it with the ketogenic specialists working here two floors below, the one's who are responsible for the treatment?"
She would get back to me.
Is four months a long time to wait or is she one of the zombies?

August 27, 2010

Don't feel sorry for yourself

This post was edited for clarification
Feel very, very sorry for yourself.  I would like to start a blog where every entry reads the same; no one can possibly understand what it is I'm going through.  Then every other person would also have a blog and write exactly the same thing, for every entry, every day. Somehow this would be the great equator and then we could all just forget about this nonsense, our troubles.

What does this mean? It means I'm not connected to the world I think. Oh I know there is a world out there. I interact with it every day in the myriad responsibilities I have besides Segev. Work, two other (teenage) children, two exes, terminally ill mother, no sleep for twelve years, the list is probably as long as yours.

But I don't want to interact with anything else besides that; laundry, bills, car tune-ups, parking tickets (yes, on a handicapped car!), computer meltdowns, parent meetings, in short every other inconvenience known to man.  I suppose if i didn't see them as inconveniences my outlook would somehow be brighter all together, chipper you might say.
I have my moods. Most of them are astonishingly good. Some are scary. How much can a man contain himself? I don't own a television. Some say that makes me more isolated. I live in the country in a small village, though pretty close to several cities. I see myself heading towards hermitage, quite seriously. After the kids are on their own, after Segev. Truth is I am already a hermit. I sit in the house and contemplate Segev.

His pain and suffering is so overwhelming i've had to shut most of it out. At least when I am not with him, which does not happen very much. I have no respite in the form of someone who comes to help, no partner to shoulder the burden, no social worker who comes to check, no education system that even knows Segev exists, no doctor who has even once in twelve years called to see how he is doing.

Now don't think that I've gone around alienating healthcare professionals. At least not on purpose. Well it is kind of a hobby of mine actually. "If you can't stand the medical scrutiny then get out of my face" kind of thing.

The one question i always receive when meeting with a new doctor, and I've gone through dozens, is "are you a doctor?". The question is not facetious. They really mean it because I have been trained and practicing naturopathic medicine for a long time and have worked in hospital and have educated myself. I began by saying the truth, "No", not a licensed physician. Then came, "Yes" talk to me baby. Try it if you really understand your stuff, you instantly go from "hysterical parent" to "long lost brother" and are privy to information the doctor has no right sharing with you.

Now i'm not asked this question anymore. The doctor's I have know me and give me respect. Some see me as equals, some just go along since their knowledge is limited and some like to think that since Segev is still alive he must be ok. No need to search, no need to pay attention or think, either he's fine or it's all under control.  I bet you have geologists who feel that way about volcano's too.

I have a doctor who makes me wait, with Segev. He needs physio. He needs his ketogenic meal. He needs inhalation. He needs to wait.  Even i understand that if you alienate the very system which you need to survive you are biting the hand which feeds you. So I cajole and bedazzle with my knowledge and concern. If I could bleed for them right then and there, I would.

The bleeding is internal, hidden away though and no one wants to know those intimate sufferings. Deal with it. I wonder how many years i have lost because of Segev. I'm not talking about the years with him. I'm talking about how much the stress has shortened my life? Oh that's ridiculous Eric!  And yet those in my situation, like some of the readers know exactly what I'm talking about. It doesn't matter of course. I wouldn't change it, can't change it.

And now i can hear the trumpets of my salvation, loud and many in number: "Eric you are amazing, no other parent would give their lives like that. No one decides to keep such a child".   Trumpets of doom.  As long as I don't believe one word of what they say I will be alright, i tell myself.

There is a place, called "The holy heart". It's run by nuns and takes the most extreme cases. Parents drop off their child. They visit on weekends. Or not at all. The kids die. That is oblivion, that almost anonymous death. Where is the meaning in that?

"In a world of seizure and pain, what little bit can he possibly Gain?
Yet we gain from the knowledge that would his life never have been,
What, in God's name, could we have claimed to have seen?"

The nuns truly are doing their best. When i met with the pediatrician who oversees the place, a professor with high standing in the local government, he tried warning me of how difficult it would be, as Segev gets older. The burden, the fatigue, lost work. Watching him suffer. Knowing there was nothing i could do.
So I answered him truthfully but without hesitation, "Professor, I have two other children. Do you want them as well?"

August 25, 2010

Discussing euthanasia at "Bad Cripple" 's blog

  You should read the linked blog to understand my response if you're interested in the subject.
"Bad Cripple" here , was commenting on Peter Singer, apparently a loud and clear voice in bioethics who produced some hair-rasing quotes. In the excerpts of the interview Singer basically talks about euthanizing extremely disabled babies instead of subjecting them to a painful and slow death. My response opens from Singer's statement that Doctor's in practice purposely fail to tend to such ill babies. As usual here is my take on the matter:

"and since that’s a very common practice in many hospitals". Common? Common?! Whaaaat?! I've been in hospitals and revalidation centers and in contact with parents of handicapped children for twelve years and never encountered the whiff of the spectre of the shadow of this "widespread" phenomenae. 

Singer continues 
'So, we said, “Look, the difficult decision is whether you want this infant to live or not."
No, the difficult decision is not whether you want this infant to live or not. What happened to the intermediate stages? We go straight from 'child with short life expectancy' to the only question being to euthanize or not?
The difficult decision is whether the parents will care for the child or not, whether the child will live in the hospital for its entire life.
O! Fellow conspirators unite. 
 The difficult decision is to understand whether or not killing such a child is economically motivated or that people like Singer are trying to manipulate the discussion to create precedent so that we can as a society deflect the entire ethical issue of economic motivation and put is firmly in the sphere of "it's what's best for the children".

"That should be a decision for the parents and doctors to make on the basis of the fullest possible information about what the condition is."
This sounds clearly like someone who does not know his asystole from a cyst. The fullest possible information is a euphemism for "consensus opinion" is it not? An opinion which will have been made by a committee, such as all such committee's, lacking the presence of a group of parents of extremely disabled children.
"But once you’ve made that decision, it should be permissible to make sure that baby dies swiftly and humanely." So again there are no other decisions, just yes or no to killing. Then to gain the moral high ground at the end of the sentence so that we cannot possibly disagree with the first part of the sentence he states the killing must be humane. Really? Really Doctor? Can't we do it even a little inhumanely?
And he just repeats himself with the last sentence, "If that’s your decision, if your decision is that it’s better that the child should not live. It should be possible to ensure that the child dies swiftly and humanely.”

Just because someone decides that he believes it is best for the child to die does not at all mean that since the option is open we should take it. The very fact that there will actually be people that misuse such an euthanasia law (really? Would someone really do that?) should be enough to bring this concept crashing to the ground. Doesn't he also realize that SO many parents can be swayed if not outright cajoled into decisions with a newborn child by doctor's pushing the new ethos?
The sad reality is that in the Netherlands euthanasia of "terminally ill" children is allowed and sets a precedent which may make all of Singer's proselytizing moot. 

My son has been categorized as terminally ill. He is now twelve years old. Each day is a struggle for survival for him. But each day has led to today, twelve years on. I wouldn't have had it any other way and not by happenstance or clerical error has he made it this far but by active decisions along the way which directly influenced his survival. Decisions i made.(can be read here)

Mistakes if there were, surely could have been, are my responsibility, as his father. But how many parents can stand up and counter legions of doctors, specialists and professors and tell them they are wrong? All they have to do is shrug afterwards and it's business as usual. Fortunately i get to live with the outcome of my obstinacy for twelve years and counting.

Flash flood

Have you ever experienced the terror of a flash flood in the desert? Segev has, in his lungs. Within the course of one hour he went from what is considered "fine" for him to deathly ill. 

It's true there was a prodrome, just like the rains in the desert should alert you. Last night several massive seizures. This morning again at 5 O'clock. I started his regular inhalation with 27% salt but usually am smarter than this. I know it matters, adding the two bronchodilaters an hour and a half late. 

Prevention, prevention. Prevention is what i preach and yet I managed to screw it up today. Prevention is the mother of all solutions.


He stopped responding, began seizing with small clonic spasms in his fingers, then hands. The classic sign with Segev. No sedative in the world can stop those. Even when he was in induced coma he had them. Now the arms and the blubbering sputtering phlegm and saliva in an endless stream. He won't stop until he's cleared most of the copious phlegm from his lungs. 

We can run down our regular checklist now:
Inhalations at maximum dosage every six hours, regular inhalations in between. Physiotherapy, tapotement, postural drainage, vibration every two hours. Massage with eucalyptus oil, every six hours. Suctioning of every cough with reaction time of under five seconds and regular suctioning roughly  twenty times per hour. All check.

For the fever, paracetamol; for his lungs, oreganol oil. Phlegm dilution, carbocisteine. Still trying to maintain the ketogenic diet with its strict hours and amounts, each meal prepared separately by me.  Don't forget: three regular AED's three times a day. All Check. Do everything alone because there is no one else in the house to help: check.

His 0₂ is under 90%, heart is over 150.

You might be asking yourself why no antibiotics? 
Segev has colonization of Klebsiella and Pseudomonas (and candida) which means it's always there just usually the strict lung hygiene program i run on him allows his immune system to keep it in check for up to a month at a time. I could give him antibiotics 365 days a year and it wouldn't help. Seven day courses are a joke, more harm than good. Ten days means Segev will scream from four in the afternoon until eleven thirty at night for eight days. Doesn't matter which antibiotics. Doesn't matter if i give him acidophilus as though he were Al Pacino in Scarface. 

Living inside Hospital is also not an option. That means 24 hour shifts. Being awake, treating him, keeping his very complex treatment schedule in a foreign environment, not being able to leave him for a second. The last time he was in PICU i stood by his bed and treated him for seventeen hours straight.

You can't suction him according to a hospital schedule, he needs it NOW. From the moment he coughs you have about five seconds before he swallows it or continues choking. He swallows the mucous and it sits in his stomach, not going anywhere. After a few days of being sick he can vomit five minutes after a meal (received through the g-tube) and the only thing that will come out is phlegm, no food whatsoever. So he swallows phlegm and it interferes with the absorption of his meds. Vicious circle. By the way he usually has an exacerbation  a few days after he has vomited food since it goes straight into his lungs. Reflux can also cause this due to the fact that the operation to prevent reflux, nissen fundoplication (full) released several years ago and he cannot survive another such operation.

So when he coughs or vomits you have five seconds to get off of your chair, jump over to him, grab the suction tube, find the switch and turn it on, open his mouth and move anything else out of the way and insert the tube, not too shallow, not too deep, into his mouth. I can tell from the sound in his mouth whether the phlegm is on the left or the right side, saves fishing around. I also hold records in the following event: going another room for some supplies or equipment and hearing Segev choke or cough and run back dash, 6 seconds.

His pulse is now down to 125 and O₂ is up to 95%. His hands are twitching less. Laboured breathing. Time to continue with Segev.

August 24, 2010

You are dying of thirst

Copyright 2009 Noa Fischer
Sometimes it feels that way doesn't it?

I drive out onto the highway and approach "gone-away"* with trepidation, actually wondering, if just for a moment, that it might not be there. It was still there, waiting. Yes, that is how uncertain the events of life have made me; I actually felt as though it were possible that one day i will drive by this sacred hill and it will be gone. Or is it that it has become a symbol of my burden and i wish it gone?

I prefer to think it's like that old building in your neighbourhood, the one you are used to seeing since your youth, finding strange comfort in its existence even though you never stepped foot in it. Or perhaps your grandmother's house that one day gets torn down and its shocking absence rocks your perception of reality until you realize that the world is moving without you, that really nothing is sacred. Or that the only stable thing is change.

It seems change requires courage and taking major decisions that effect change that i made years ago appear to me to have been made by a person full of courage. Not the person i am today, driving.

When my eldest son was eight he still hadn't learned to ride his bicycle. He is stubborn. He refused to give in, stood his ground. "I don't want to learn!". I suppose the crash into the dumpster at age six rattled him more than I was willing to admit.  

But that takes courage, not to learn to ride a bicycle.In face of friends zooming around the village. Obstinance is not the ability to resist change it is the courage not to change, you could say.  

But normally change requires courage; the courage to know that when you feel you have become the world's greatest authority in your son's care, to say, wait a minute something is wrong with that. The courage to continue to seek out more specialists more treatments, to truly listen and consider what others say and to admit, if only to yourself, that you had it wrong. 
Change is there. You must see it. The moment you see your sick, decrepit invalid child as static then you are losing the battle, you have lost sight of the one thing that gives you strength, the one thing that helps: things change. The more you are able to be aware of change, or differences, in your child the better you can catalogue what is normal and good for him/her. 
And for that you need courage because after the 43rd time you have done suction today you cannot hesitate going into the 44th. Each moment builds to the next.

My eldest son learned to ride his bicycle. Sometimes things need to percolate a while. Sometimes you drive by a hill and think, is it possible it won't be there? But it is there. It is there to remind me that i made a good investment all those years ago in ascribing to it mythical qualities. It has become a symbol of my determination and I know that if i ever have doubts, all I need to do, is to go and drive by.

*Gone-away is a hill christened by me, an attempt to create a bridge between a mythical yet real place for my kids.  When Segev was born, living in the hospital it was decided that i would do the research to help Segev and his mother would care for him in hospital. Each morning i brought my other two children to kindergarten passing by this hill and we would listen to Joanne Shenandoah sing "gone-away". My daughter, just three, asked me what is she saying and I said "Gone away."
"What's gone-away Daddy?" she asked.
"That is the place, like that hill there, where you can go to and be alone and think of far-away places."
I've always promised myself I will take the kids, with Segev to the top of that hill, to celebrate his birthday.


Over at Claire's blog (http://severedisabilitykid.blogspot.com/2010/08/sick-andor-disabled.html) she wrote about establishing an awareness of the difference between disabilty and illness in our kids. Here is my response.

There is Segev is completely disabled
There is Segev is chronically ill because of his diabilities
There is Segev is very ill, close to death ill.
If you want to categorize, define, seperate, box it.
Then there is Segev is terminally ill because of statistics.

Which of these should be my concern?
When Doctor's categorize our children different perspectives are created and about differences we can and naturally will argue.

For the extremely disabled child deterioration should not be a concern, leave that term for the "specialists" to brandy (sic) about since deterioration in such a child is indeed something which cannot be treated. Unless, as is the case of the caregiver/parent it means MORE FREQUENT illness; this necessitates reassessment of your treatment protocol for chronic ill states, like different antibiotics, better lung hygiene for lung infections or different AED's for seizure's for example.

Since taking care of your child must necessarily be a symbiotic process, ideally the responsible parent is going to be the primary caretaker. But you must learn to filter the doctor's opinion just as the doctor will filter your concerns as a layman's or even as a "hysterical parent".

So we do the same wrong they do? What else can you do?

Education isn't a science, medicine is an art not a science and anyone thinking otherwise is just plain ignorant.
Like i said for those that compartmentalize: extreme disability is one thing that naturally leads to another-chronic illnesses that need to be addressed (especially by prevention) in a prioritized fashion.

Physical rehabilitation can address some problems of the disabilities but exactly as Claire states, we must sometimes relent and allow the patient be more important than the disability. There are certain instances even that the patient becomes more important than the illness, as i have encountered more than once when, close to death, the question of calling an ambulance in order to save his life or letting life choose for itself, was open before me and i chose the uncertainty of life as being the better option over the "certainty" of modern medicine. But this is an extreme example, real but out of the ordinary and thus not useful in Claire"s point of creating a better definition by which we can create perspective for treating our children.

This is certainly one of the reason the vast majority of parents give the treatment over to the professionals. Never shall i judge another parent because each and every one has to listen to their own conscience and interact according to their particular abilities when choosing care for their children. Just know this: no one is an expert, not even the parent who like myself is completely responsible for organizing my son's care both on an executive as well as a practical hands-on level.

I think in the end Claire, concerned with the trend of classifying handicapped people sees the gulf between legislators and the established medical community and the practical real world of caring for extremely handicapped children. But that Gulf seems destined to remain since we are busy taking care of our children and not spending our time drinking coffee with the power's that be, that i believe, turn towards medical professionals for their opinions and parents of much less severely disabled children.

The kind of change in approach that Claire hunkers for necessarily happens at a grass roots level. Education of lawmakers is slow and tedious at best since we have to put up with mind-boggling ignorance and arrogance from the doctor's who are UNWILLING to work together with the parents to LEARN.

But it is exactly people like Claire, eloquent in presenting her arguments, that are the backbone of a grass roots movement to educate others about the necessity and willingness to learn and share. These are the pioneers of conscience and ability of whom later we will say, we have accomplished much, because we stood on the shoulders of giants.

August 22, 2010

Before the heavy stuff

If before that born to you I were,
knowing what was to transpire
would i to my birth concur,
or balk at my own creation with regret and full of ire?

With each breath i struggle to sustain my life
then each exhalation sucks away that very right

Can I live my life before the thirsty end will begin?
My flesh fraught, crimped as Job's little twin?
Can i live my life SO much
as to count it as a win?

©2010 Eric Fischer
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