Segev's bed is and always has been in my bedroom. His multiple cases of central apnea while sleeping, seizures during the night, disquiet, pain, the need to be turned, the danger of choking on his vomit, the endless suctioning, result in a haphazard slumber that on average sees sixty minutes of continuous sleep. All conditions which demand extreme vigilance and equal measure of timely reaction.
And that is when he is 'healthy'. Now, a month after finishing his most severe case of pneumonia to date, he is his old steady changing-by-the-hour self. The episodes of central apnea, always sporadic and unpredictable have petered out; the last having been about a year ago and before that, even longer. His seizures, which were disconcertingly strong and many since I reduced one medication due to side effects, has stabilized. By that I mean that his most severe fits have retreated back to their labyrinthine lair, leaving an advancing and enlarged army of medium seizures to ward off that elusive enemy, peace and tranquility.
But while there is less to tell about continued, long sessions of physiotherapy at three O'clock in the morning (till five, six or seven) Segev suffering from pain has returned, vengeful: such as last night when I was able to put him to bed only close to 01:00 and by 01:30, just as I had fallen asleep, the screaming started. It has been quite some time since he screamed so harshly. There were three long, excruciating months last year from February to April that he screamed from pain. In continuing to look past my own experience those trying months brought me, after again trying all manner of treatment and sedation, to apply for medical cannabis for Segev (only authorized after the second request), do an endoscopic investigation of his stomach (the need to vent high pressure air from his stomach is off the charts), planning a CT scan (to investigate the three areas where his intestines burst in 2005, cancelled due to the overly massive amount of contrast dye they would need to inject into his fragile veins) and half a dozen doctor consults with endless bureaucratic nonsense when asking for coverage for those meetings and tests. Last but not least, days of missed work. That tends to make me especially agitated since I only have two days of work a week, seeing as my 'real work', my true work, that of taking care of Segev, remains without any form of monetary recognition.
Segev's screams are unnerving to me because of several reasons. I can't stand to see him suffer is certainly the main one. Then comes the fact that being fatigued chronically makes the whole thing , at one O'clock in the morning after a full day of attending to him and only attending to him, especially difficult. There are so many things to check and treat. He was throwing his left elbow into the air forcefully. As a result the dislocated shoulder joint was sequestered so sturdily against his clavicle that I had little success in realigning it. When I finally did, it had no effect on the screaming so, frustrated, I moved on to his stomach and began manipulating the intestines by rocking and squeezing while simultaneously vibrating my hand in order to release pressure there. No luck. Next I pressed on near his neck, at the phrenic nerve where the adhesions and tightness have raised the muscles to a string and lump like mound that when treated allows Segev to relax significantly. All the while trying to hold down his left elbow and prevent the continued addition of that discomfort and talking to Segev trying to calm him down.
He actually did quiet down, several times, and I waited another minute in order to see that he was able to give in to his considerable fatigue. I settled into bed, the cat eagerly jumped back up despite having been unceremoniously cast overboard several times already. Not one minute passed and Segev again began screaming. Each time I tried a different, known, area of discomfort. His hip has been especially bothersome these last few weeks and so I tried to return the head of the femur to its housing, the acetabulum. Although there was crunching in the joint when I bent his leg forcibly, since there is no chance of Segev cooperating, the joint's rotation has become very limited, elicitating the sound of gravel even when he is relaxed. Applying pressure to the joint brought out several dulled clicks which appeared to calm him down.
Back into bed after singing Segev's lullaby for the third or fourth time, cat jumps up, covers drawn and I fell asleep again in a matter of seconds.
So we go through the cycle again and finally at 02.45, all is quiet. After that we both slept for nearly two hours in uninterrupted fashion until he began his nightly occurrences of coughing and choking which require suctioning. Each time, I jump out of bed but not always equally successfully. Sometimes my feet get caught in the bed linen, especially the blanket and several precious seconds are spent flailing in order to extricate myself. Sometimes the cat jumps off of the bed, sometimes he gets thrown by my Olympic-style bounds, his air-born trajectory of no relevance to me since cats always land on their feet.
I feel a heavy ache in my neck and head, purely from fatigue and on more than one occasion the room sways unsteadily as I try to get my sea legs in as short a time as possible.
Now, nearly a day later, he has only had pain on one occasion, for a short period. Segev's breathing is raspy, bubbling with saliva and phlegm but his need for oxygen is a mere two and a half liters. He is happy when I talk to him, hold his hand and make certain he understands that Babbu the baboon is a wild and crazy animal, Tiggy the tiger as usual wants to eat his nose and Froggy, his favorite, well froggy is perched as always just to his left. When I take Segev out of his wheelchair, just for a moment, or for some physiotherapy or even just to change his nappy, he becomes even more animated. His excitement though often has its limits and there is no doubt that his semi-conscious stupor is this fortnight's master.
Nights like the one described, minus the screaming from pain, are common and wearing, immutable even, just barely tolerable because at least they are not fraught with the real dangers that accompany his severe chest infections. The pain though, is an element which buckles your knees and makes you question if you have what it takes.
So after a total of no more than four hours sleep I've been able to drag myself through the day, making use of a rare few hours that my daughter is home for her to sit with her brother, between the two of us we keep a full watch over Segev and see that his schedule is kept, and I can continue sifting, sorting and ultimately packaging the household since we, for the first time in over fifteen years, will be moving to a new abode.
After three years of daily searches I found by chance a small (55sq. m or about 550 sq ft) apartment at ground level. While congratulations have been forthcoming due to the opportunity to move to a place that is not literally falling apart, with flames coming out of ancient electrical sockets, windows, paper thin, spontaneously falling out of their frame, rats freely roaming the balcony, window sills, shutter boxes and attic all the while screeching maniacally, it's not that nor the severe cold of the house in winter that I will miss, nor the on again off again water boiler, heating and plumbing. More than the dinginess, the peeling paint, the extreme amounts of dust or the leaking toilets I will miss the two flights of stairs which I have been carrying Segev and Segev's wheelchair up and down, for over fifteen years.
The new place, while half the size of the current one, is considerably more expensive. Possibly, if I hadn't injured my back again last month lifting Segev's wheelchair into the van, and still not fully recovered from,I might have passed on this opportunity to move. I had, after three years' searching, just a week prior, resigned myself to the notion that apparently I would never leave this dungeon, this pantheon of grime.
It is strange because the notice of the new place came through the village's 'google group', just one more email, similar to the ones that daily bombard my mailbox with notices of one person's indignation over their neighbors' tree protruding over their property or the lack of cleanliness of the sidewalk, those kind, that perfunctorily get deleted. This time just as I was about to delete the message, sight unseen, a little voice said, "have a look at it", and within 15 minutes I was at the apartment talking to the owners.
As I have said, the new place is tiny and will present its own challenges, also vis a vis the kids, but I am concentrating on the goodness of a change of scenery, cleanliness, convenience, in short I am hoping that this is a return of the courage of old, perhaps wiser, since, and make no mistake about it, this move, besides being an enormous (nearly entirely solo) exercise in will power and physical endurance, and where nothing, absolutely nothing with Segev is simple, not changing his diaper nor suctioning, a tube or wire inevitably wrapped around his hand or impeding access to whatever you need most at that precise moment, this is never the less still exchanging my safe, comforting routines with Segev for something...different, and that scares the shit out of me.