"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.
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.