June 05, 2013

This account

The days of our lives

that naturally present a certain measure of dullness as in between providing moments of physical and medical therapy, playful moments, dramatic moments and the inane seizures which come irregularly, without warning but with me ever at the side of my son, diligent, ever ready, you consider your changing (evolving?) identity.

This dullness is not for want of anything to do, as you may surmise from the above that there is never a half-hour that passes without something that needs to be done, but what can you do for yourself in between. The other kind of dullness present is the kind which organically develops, almost secretively, in the dimly lit mind of the parent and caregiver as his isolation grows and feeds itself. A dulling.

One of the pillars of this decline is without question, fatigue. Fatigue is weariness (and yes, wariness), befuddled thinking, slowed reactions and truncated emotional responses that speed along to their destination like a train through a tunnel, impatience their steady fuel and feelings, whether hate or love, their loyal passengers.

One too many drinks, but never one too many nights

The silence of the night was broken by the now deeply hated shrill alarm of the pulseoximeter. Most strange is that I still, to this day, go to bed thinking, ‘perhaps tonight is the night that I won’t be woken by the alarm’.
The evening came to an early close and I was able to transfer my son and all the necessary equipment to the bedroom by midnight. Certainly, as expected, there would be waking directly into a single leap to the suction machine to remove any obstruction from his throat, somewhere in the range of four to ten times. Turning him over to his other side (he cannot lie on either his stomach or his back) is routine, though this considerably increases the opportunity for his left compressed lung to close completely and then another time to turn him back again. There are the multiple flailing seizures where, in lieu of tying his arm down, I stand over him and gently but firmly hold it in place instead of allowing the vivid shoulder displacement to further erode the joint, then finally replace the dislodged pillow from between his knees. These are many and come close to one another but the insistence of fatigue will often still convince me to lie back down on the bed, facing Segev, to be called back to action mere seconds later. 

This night was one of the more tedious ones as I rose with the alarm sounding at two O’clock, after a lengthy one and a half hour sleep. His oxygen was low of course. Often this requires a few compressions of chest and back simultaneously to right things or rarely, a simple repositioning. 

Segev struggled to breath and I quickly determined the left lung had closed. This time a full hour of compressions ensued. Inhalation therapy was hastily prepared. An ancient and steadfast technique was used of introducing water into his mouth to both moisturize his throat to allow less unobtrusive access for the suctioning catheter and, as the water invariably goes into his windpipe, to induce a cough reflex. Finally the ambo bag, always accompanied by a small measure of anxiety, to force air into his lungs.
Earlier that evening the same thing had happened and together with my daughter we worked to open the obstruction but Segev began a rare episode of extensive hyperventilation, unable to stop the dry rasping gasps, resulting in his chest locking into place with no perceivable movement of inhalation or exhalation and no give whatsoever to applied pressure.

Now, at night, he was not hyperventilating but the sound made is that of a person who has just come up for air after diving, but having gone beyond their usual depth finds themselves racing to the surface for fear of losing consciousness finally able to gasp that saving breath. For Segev, each breath was taken as such and the inescapable picture you are presented with, standing over him, is that of endangered life.  

The only thing which allows me to keep my wits about me is not any training but rather that I have been there before and thinking that, 'just like every other time, he’ll pull through this time as well'.

After the intense hour had passed, his breathing calm and the oxygen level on par, sleep was mine in a matter of seconds. Over the next two hours, from 3-5 O’clock I rose a counted eight times to either perform suction or replace the dislodged oxygen probe while removing air from his stomach and turning him accounted for an additional two rises. At 7:30 the day begins afresh and happily he did not have one single blockage that required more than the precursory four or five compressions or small amount of cough inducing water to remedy.
The vomiting which dominated the day, though, including multiple changes of clothes, the worry of aspirations and adjustments to his food intake (lost fluids, yet inability to replenish proper nutrition due to delayed gastric emptying and the danger of expelling medications) required nearly all the focus my tired brain could muster.


  1. Hugs and hope for some rest for both of you.

  2. I hope you can get the Hayek you mentioned and that it
    will let you and Segev have some quiet nights of enough uninterrupted sleep to dream.

  3. I have every faith and confidence that you will get whatever Segev needs which sustains his quality of life and your equilibrium. It's my prayer to the universe, and it has many resources...Warm greeting to all...