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.
Hugs and hope for some rest for both of you.
ReplyDeleteI hope you can get the Hayek you mentioned and that it
ReplyDeletewill let you and Segev have some quiet nights of enough uninterrupted sleep to dream.
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...
ReplyDelete