November 20, 2010


Segev is sitting in his chair. There is no need for supplemental oxygen even though his breathing is rough today. A kind of staccato blanket of sound, rasping and choked, coarsely allowing air to enter his lungs but also his stomach.

He starts to moan uncomfortably. “What is it, Segev?” Soon his legs are thrust forward, then one leg recoils and is thrown out again, his left and right arm slowly, unevenly contract. The moan is louder, more urgent and begins to take the form of wailing. Your stomach, I think to myself.

“Come Segev, let’s get you out of the chair”, and I unstrap his hip restraints, catching a forearm in my face as I bend down to him. He complains loudly. He is nestled in the chair, the side supports pressing slightly and I slide my right arm behind his back steadying my stance and thinking about the distance of the wheelchair to the couch where I will place him to work on his stomach.

Segev’s chair is too close but the urgency of his cries makes me nervous and I lift him up out in one sweeping motion. Sixty six pounds of contortion that above all I have to keep safe, navigating the short awkward distance, leaning over the couch but forced to place him as gingerly as possible. The last few inches I fall forward but Segev is softly accepted by the cushions.

I begin pressing on his abdomen, to palpate any hard areas. He is complaining a little less. “You know I’m going to help you don’t you Segev?” His answer is a seizure: he stiffens, exhaling forcefully, a half smile locked on his mouth, arms and legs jutting outwards. He stops breathing only for a few seconds before some misguided swallowing starts, collecting saliva which then enters his lungs. I scratch the bottom of his feet. He starts swallowing more rapidly, loudly, coming out of the minor seizure and begins choking on the saliva, his eyes darting toward one side. I lightly press under his chin to force his mouth closed and he begins breathing normally, the dynamics of his swallowing restored he no longer chokes and I continue pressing on his abdomen.

He already had a bowel movement today, a normal quantity, so first I must check if it it air in his stomach causing his discomfort, learning, after having seen how Segev can complain for hours and finally let out a small sharp burp, two even three hours after a meal, finally releasing the pressure and allowing him to calm down, fall asleep, to instigate a regimen of checking for air in his stomach each time prior to giving him to drink or eat or medication and when his breathing is particularly unregulated.

Massive amounts of air reside in his stomach, causing him to vomit if not caught in time or sufficiently, as well the g-tube diameter having become too narrow for the hole in his abdomen, air is sucked in along the sides.

The one-way valve does not want to open in my direction, doing its job, so I attach the feeding syringe, open-ended, to the feeding tube and this allows a rush of air and liquid to bubble from his abdomen.  He looks more relieved and quiets down, almost immediately closing his eyes.

Two hours later he wakes with a seizure, always a seizure, and the complaining starts again.  While he slept he was given inhalation, not ideal because his breathing is even more shallow when he sleeps, but necessary to keep his lungs moist and able to bring up the monstrous quantities of phlegm that constantly accumulates. Also I gave him to eat, as the ketogenic diet has very regular hours and Segev must have five hours between his meals unless I want him to vomit, the semi closure of his stomach that is upposed to arrest this, the nissen fundoplication, having released years ago.

The waking seizure passes slowly. “Hey Buddhi!”, I chime, “You were sleeping, Buddhi, and I gave you to eat while you slept” I inform him. He smiles and gets caught in another seizure. This one is small and lasts only a few seconds but again I do need to close his mouth to restore his breathing. 

His voice comes out raspy and stops suddenly, then starts again. His swallowing makes an irregular clicking noise, somewhat muted meaning he has a mucus plug in his bronchial tube somewhere. He swallows hard now and his breathing is irregular as his chest rises and falls abruptly and deeply.

Usually a plug only happens after he’s had a longer sleep. I pick him up and sit down on the edge of the couch, balancing him on my lap with one arm behind his back, supporting his head with my shoulder and begin clapping on his chest, side and back. Then I put my hand on his back and administer chest compressions with my other hand. I start again with the clapping, cupping my hand to get that ‘thump’, ‘thump’ sound which indicates a certain degree of suction, driving the moderate force deeper into his chest wall. More compressions on his every second exhale, the first exhale always being too superficial and ends in resistance on his part if you attempt to push through anyway.

The noise of the air exiting his lungs changes tone and I know that a cough is close, even imminent so I continue with some urgency. The phlegm is loose with a rush of air and I quickly activate the suction machine, grabbing the catheter tube and bringing it close to his mouth. The pulse of the machine is like an organic thing to me, I know it will help me and I see it as an integral part of Segev’s breathing.

Segev finally coughs and a split second later I place the tube into his mouth, toward the left side where nearly always the phlegm rises and catch the culprit. Segev smiles as I suction, the tube sliding effortlessly into his throat with the gag reflex gone years ago.

The suction catheter gets a rinse in the big plastic cup with soap while Segev chuckles then locks his jaw open and goes into another small seizure. Should I put him back on the couch or back in his chair?

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