Keeping things simple: a (regular) hour or two in the life of Segev.

Segev is breathing hard and I can hear other sounds as saliva enters his air passage because he has no control, no way of coordinating swallowing. I’ve spent time talking to him, telling him how much his stuffed toy dog is his friend and gives him hugs and kisses and barks wildly at nothing at all and there have been times when he smiles slightly at these antics of mine. He hasn’t vomited even once today although there were many close calls. I’ve spent time treating his neck and back with both massage and Shiatsu, applying pressure to relieve some of the pressure on his back, trying to maneuver his left shoulder to sit back into the socket, lengthen the contracted neck muscle on that same side and apply pulmonary physiotherapy to his chest and back to help move some of the phlegm outwards. I’ve given him his evening medications, first removing air from his stomach and replacing the sterile bandage around his leaking gastrostomy tube, prepared his special ketogenic meal from scratch, helped him have his bowel movement by massaging his abdomen and instigating the release of the anal sphincter muscles with the flexible probe of a thermometer. He has finished his evening inhalation therapy to dilate his bronchial tubes but his irregular minor choking on saliva, regular coughing to bring up phlegm, constant rasping continues and I strain to simultaneously partially lift him and shift his back to a more upright supported position against the multitude of cushions on the couch.

There are three places which define his world. His bed where he stays during the night for up to seven hours and his wheelchair and couch, that share approximately equal time between them, alternating regularly to give him more comfort, prevent issues of circulation associated with long spells in one position and allow for the various elements of caring and treatment he requires throughout the day.

I’m watching him from less than two meters away, sitting at my desk, while his neck lowers itself slightly and his chest and shoulders raise themselves in unison as he is breathing, rasping air at least signaling to me that he is breathing, which is definitely not a given for my son.

Always without warning, a seizure grips him with a staccato dance turning his face blue in absolute exertion of muscle. I grab his flailing hands so that he will not strike himself hard or scratch his eyes with his overly long nails. It seems I am always clipping his nails, to no avail. The seizure is violent enough that I reach for the oxygen tank and twist open the main valve. It would be quicker if I could leave the main valve open and then only have to release the metered valve to the desired amount but plagued with eternally leaking seals on nearly every bottle of oxygen makes me do a two-step to get oxygen flowing towards my son’s brain, allowing him to recover more readily and regain consciousness, not drifting off exhausted, non-responsive. His mouth is making clicking noises as his eyes explode back and forth and I think for a moment that this must be what happens when people are electrocuted.

With a few final jerks of his head, arms, jaw, legs and abdomen he finally goes limp, but not with any sigh of relief, just quietly. The difference is so great I have to check if he is breathing at all even though I know his episodes of central apnea have never occurred after a massive, visible seizure like this one. His color returns quickly and his eyes close. Even his breathing is softer, missing both the stertorous rasp and the heaving momentum that grips his every breath. I replace the probe on his finger and thankfully it immediately begins measuring his pulse and oxygen levels, automatically cancelling the strangely pleasant sounding beep of the alarm.