February 19, 2012

Diary of illness and regret

Back from the ragged edge of extreme parenting. A most humbling experience I assure you. Besides trying to care for Segev, as always, but now with flu, in a child who already suffers upward of a hundred seizures a day, many of them episodes of apnea, in a child with bronchiectasis and poor lung ventilation per se.  A child always on the verge of vomiting. A non communicating child with active subluxations and poorly functioning bowels, delayed emptying of stomach who must receive an exact amount of calculated medical diet nine times daily on schedule.


But not now. I tried. But I failed to take care of Segev because I myself collapsed with flu. I get flu once a year, like most people. But not like this. I kept going, checking up on Segev when he spent time with his mother, no longer able to keep him extra with me as in the past because I could maintain physical and mental focus no longer. 
I tried to keep going, keep functioning; I had decisions to make all the time for his well being, adjustment of dosages, new medication, treatment protocols for his lungs. On thursday I went to see his physician for prescriptions. She immediately noticed I wasn't myself. I managed not to cough on her. Dragged myself to the pharmacy and shopping.
I've been sick before but not like this. I missed my two work days, including today. I never miss a workday no matter how I feel; to do so would be a luxury I cannot afford. As a matter of fact in years gone by I stayed home only because of Segev's condition. To keep an eye on him, treat him regularly and be on call in case things went south. But even that adjustment I had to make: work was an absolute necessity of worldly matters and Segev would just have to get by with less care.

My eldest was coming off of being sick with flu so I had also been caring for him. But Segev had his first bout of high fever already ten days ago. I intensified his treatment which apparently helped stave the onslaught which ended up breaking through again last tuesday. So he's been sick for a while with high fever. Unconscious or moaning from pain, on oxygen.
I thought I had seen the worst of my flu but that was just a taste. I tried to take care of him since Friday again but I started slipping. Then two nights of caring for Segev, after each full day of care. Catching ten minute catnaps and then jumping up for suction, inhalation, leaking gastrostomy tube, screaming, seizure, diaper, food, water, medicine, physiotherapy, switching sides. All while sleeping on the living room floor because the rain had flooded half of the electricity in the house. Every ten minutes getting up and I had to go back down for another few minutes because I was exhausted, eyes closing, and couldn't know if somehow he would let me get half and hour or perhaps even to that magical 60 minute mark, like when he is well. Each time I woke again I felt like yet someone heavier was sitting on my neck, threatening to subdue my conscious mind.

Does anyone need a reminder of the three weeks that Segev stayed in Hospital with exactly the same situation starting it off, exactly at this time of year? The same hospital where incompetence dragged him down into induced coma,severe gastroenteritis, severe viral pneumonia?

Finally this morning I reached my breaking point. I could see the ragged edge coming near; I was ranting, shouting, semi delirious. "Fourteen years!" I screamed. "What kind of life is this?!" I demanded, angry not nearly as much for myself but that he should suffer and that there is so little to do, in the grand scheme of things. Small wonder that my mother's death still stings along with the exhaustion of not only caring yet again for such a medically fragile ill child but with this unreasonable load of being ill myself.
Had my daughter not taken over for me for an hour and a half and given me the first solid hour of sleep I had had that entire week I dread to think what would have developed. But that is what family is for isn't it? To pull together in times of need and lend assistance.
Later Segev's temp returned to normal for the first time since Wednesday but he also vomited and has been doing so since. Having transferred him to his mother's I went to bed and stayed there for six hours. 
I am in hourly contact with the other household and am regaining my confidence in my own decision making but Segev is still not out of the woods. His temp hovers around normal but various parts of his body burn hotly.  

The break from the blog, which I felt to be inevitable, so far seems to me to have been an intimation of the sickness which was developing, together with the added weight of concern for my son(s) and with attribution to the monumental experience of losing my mother, under circumstances which are at the very core of my disagreement with how society approaches such compromised individuals.  I immediately regretted stepping back but soon the confusion of the illness clogged my mind and it will be some time, I feel, before I am able to focus again as I used to.

I see illness as an opportunity for learning, especially the flu, which while for normally healthy individuals is not overly threatening, it certainly makes you feel threatened. No strength. Delirium and pain. Moaning uncontrollably. Confusion and doubt. Signs of a much more severe condition as though someone is saying, "better take a good long look at what's important to you because this time you get a second chance."  It's too early to say if this time there will be a take away message for me but I have no doubt that it adds to the impetus already started a year ago in hospital to make changes that will mean something.
For now I'm still in the thick of it with Segev far from well but that right there is the first lesson that finally now is etched in my brain; only so much you can do Eric. Much less than you thought apparently, but it's the best you can do. Everyone has their limits. Why do I keep having to push mine?

February 11, 2012

 "The point of this blog has always been for me to honor my son's struggle to be here with us

There is no doubt in my mind that everyone I know seems to be going through a rough patch to say the least. Solar storms some say. Looking at the people whose lives I've come across through the computer leads to more people with their stories. A family struggling with caring for their severely mentally and physically compromised son lose the battle and then four months later the father dies unexpectedly of a heart attack. Wow. Makes you want to shut off your computer and hide in the closet.

Or Segev, who has been out of sorts in a way which was making me more and more nervous. Since my mother's death my palpitations have returned stronger than ever. Then yesterday the shit hit the fan and Segev had several large seizures in a row after a few days of more than usual complaining and difficulty coordinating his breathing. Diastat, as an adjunctive emergency medicine, had little if any impact and he continued seizing but then completely lost consciousness. He "rested" the entire day at his mothers while I tried my best to concentrate on my patients and earn a living. I must have called both kids and the ex close to twenty times all together to get status reports and to give instructions. But the next morning an early call confirmed my intuitive fears and when i arrived five minutes later he was still seizing continuously. 
It's a good thing that I can tell what is wrong with Segev, through experience and knowledge and intuition. It helps find solutions and treatment modalities. But still I don't know the cause and even the best treatments are only going to be of so much help.
All in all though he is a complicated human being and I can usually only catch one aspect of what is the matter with him. On an occasion such as this, where the seizures are being caused by enormous amounts of phlegm strangling him, (despite the physician's hearty assertion beforehand that his lungs are "clean as a whistle") this ability is of considerable significance.
So many hours were spent on inhalation therapy, physiotherapy, getting him to pee after twenty hours of not passing anything and to administer appropriate medications at the appropriate time and, as is always difficult to gauge with Segev, the appropriate amount. Finally his consciousness returns sufficiently to force him to cough and the oxygen could be reduced and after only half a day removed.
Finally I could give him some of his ketogenic diet to try and regain that therapy's influence on his seizures and at one thirty in the morning was even successful in getting his bowel movement done. Of course since his recent urine test found crystals in abundance despite counter measures, I will probably have to take him off of that medical diet which then sets in motion the massive undertaking of restructuring his seizure medications. I need to find a sympathetic neurologist in order to do this. His last looked at Segev for about 60 seconds when he was admitted to hospital last year, seizing every four minutes and proclaimed she wasn't certain they were seizures. Nevertheless the protocol implemented then was for status epilepticus. Or I could visit the neurologist who was pleasantly surprised when I brought him "new" information on the VNS device because he "had to give a lecture to some doctors on it" the next day and wasn't interested in any further studies of Segev because "it won't further my career since he is such a rare case".

But all of that is not even the point as Segev is recovering, which somehow strangely gives me a sense of reprieve from the multitude of issues, such as his shoulder and hip displacement which need to be addressed. The point is that everything is a cycle, as people like to say, 'rinse and repeat'. This repeating will be fourteen years this march 8th.

I'm tired.

Not too tired to jump up again and again throughout the night to suction Segev in an instant. On my feet and functioning before I'm even fully awake. Not too tired to get up after each night of 45 minute catnaps, amounting to between three and a half to five and a half hours of sleep, take care of Segev in the mornings as I always do; medications, ketogenic diet, inhalation; everything dragged from the bedroom to the livingroom. No, not too tired after bringing Segev to his mother to go out to work after two nights of little sleep, work until late in the evening, including three hours of driving. 

It has become the monotony of life, this extraordinary situation of caring for my son and the endless rounds of doctors shrugging their shoulders, not out of hopelessness but rather out of a lack of interest, that has me wondering what the hell am I doing. I mean isolation is one thing when you choose it, but when you reach out for assistance and find there is next to nothing. No respite care. No nurses. No holidays.

And you turn to your friends, on the internet that is, to get a bit of respite by caring about their equally "uncomfortable" lives.
Yet there are many beautiful moments to relish, both here and with friends, acquaintances. And I have tried to put in this blog also the good stuff that happens.

But I don't like this notion of rinse and repeat. No one wants to hear about the constant repetition of seizures, lung infections, mysterious aches and severe pain. I don't want to say the same things over and over again, even though that is the life that has accumulated over the last fourteen years. Good moments, certainly. Segev has brought me enormous happiness because of his unconditionally positive attitude, his acceptance.He is my exact opposite, with none of the mental complexity but makes up for it with his physical complexity.

I've taken this as far as it can go for now. What I mean is both the ability to care for my son, which I will continue doing with a slightly nuanced perspective, and the things happening on this blog, which as it stands now, will not continue. Writing here has been important to me.
Also I do believe that being open helps us understand issues much faster. Communication is essential to understanding and I wish I had the strength to properly invest in the blog but at present I don't. 

The point of this blog has always been for me to honor my son's struggle to be here with us and 
people have assisted me because they got to know about Segev through this blog and that has been and will remain something most dear in my heart. I don't believe in goodbye's, never have, so I predict a, hopefully short sabbatical and later return.