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?


  1. I am so sorry to hear of yet another grueling ordeal for you and for Segev. I wish, again, that there were some way to help you, not just the sending of healing thoughts and prayers and wishes for continued strength and courage. I send all that again, but it seems lame.

    And the central nervous system component of the flu is brutal. It will pass. You will emerge -- despite the severity and seriousness of this post, I found it brilliant in its depiction of the mental aspects of illness --

  2. Yes, Eric, you can only do so much and given the throws of the flu which has captured the spirits of both my friends, you are doing beyond the most extreme level of expectation.
    I hope that Segev turns the corner, dad will also rebound but that does take a bit of rest and I hope that the universe in its wisdom and concern allows for that rest. I only wish that you had someone there to step in for awhile and allow rest to consume for a brief time.
    I am confident that a reprieve is imminent ..and so I will send my wishes. I wish that you lived down the street...

  3. Yes, you do push your limits - and with so few resources. Your strength is so important but I fear you will deplete everything you've got. I know you're in a catch-22 situation where no one else is competent enough. However, one man is not super human. No wonder you are so sick this time. You've had a very hard start to this year and that just took your last little bit of resistance from you.
    You'll both get through this a bit battered and bruised but hopefully you may force yourself to somehow give that body a bit more reprieve. It's so important that you stay healthy.
    I agree with Phil- if only we could all help each other. I will be thinking of you and Segev and hope the worst has passed.

  4. I so understand the stress and fear and seeing the edge of the abyss, limits. I'm in the 31st year of caring for my daughter, the past 10 without help, and dealing with chronic illness myself. Somehow, we go on. Sometimes I tell myself perspective is everything, but I have been made aware of limits. We are mortal beings. Be as gentle with yourself as you can (and I know that's impossibly hard to figure into the whole equation, and wouldn't be so fatuous as to say such a thing except for the path I walk.) Be well.

  5. I hate that I can only offer words. I wish I could offer practical help. I am not surprised you have reached your limit. Most of us can only take so much before we need to recharge ourselves.
    I hope the worst has passed and that you are well again soon. I continue to pray for you both to recover.
    Be kind to yourself.

  6. "A" I want to thank you, as always an inciteful and gracious response. "Be as gentle with yourself as you can" is certainly the best advice given to me in this experience with Segev and others here are also saying it. When everything appears dark, I say, turn on the light. Meaning we get occluded and secluded by our own defense mechanisms, in part due to extreme fatigue.
    The difficulty in hearing (also from myself) "this too shall pass", is that there is often an absolute sense to these moments of precipitous ill health and "it will pass" could mean an ending. But we can only fight so much and so much is in how we fight. With grace or with anger, or a little of both but that balance is needed. I hate that feeling of resignation, fight it with tooth and nail, and suffer for it.

    All of you thank you.

  7. ((())) I hope you and Segev feel better soon, and that you are able to get the rest you need.

  8. Sorry to hear that you are both having a rough time, I too feel bad that we can only offer words of love and support. But at least you know that we are sending all the positive energy that we all can.

    sending the biggest hugs I have for you both xxxoxoxoxoxxooxooxx Love Mel