Segev enjoys his bath, which is actually a shower in a rifton chair that nowhere near approaches what he needs. But he is calm as I splash water on him and massage his body with the liquid non-soap. The bath tub does not accommodate the chair's stand so you have to bend over the entire time but if you pull in your stomach ever so slightly your back won't get stuck. His arms flop by his sides, sliding between the rim of the chair and the tub wall which is awkward because Segev will, despite being calm, almost hypnotized, suddenly flail and jerk his arms as part of a small seizure. His hand will pop free and my reflexes are good enough to catch his arm as it rockets toward the metal faucet in search of injury.
There is also the screaming. For no apparent reason at all. This morning I gave him a bath at 7.30 after a usual night of jumping out of bed in a split second to suction him (less than ten times!), turn him over, physiotherapy to unblock one of his bronchial tubes, at 4.30 inhalation with hypertonic solution and to change his diaper and clean the bed because the XS adult diapers are woefully inadequate.
The screaming started just prior to taking him out, again I say, without any apparent reason. His expression was a mixture of 80% pain and 20% fear and I started to feel angry because, I don't want him to suffer, especially after an incident free calming shower and also very much because I couldn't understand why.
Like that rolly polly speech by Lambert Wilson as the Merovingian, as long as I know why I can start to do something about it, I have that ability, to press or touch certain points on his body which can help with pain. But without why I am just like anyone else, looking on at Segev from the outside. Not a healer, a therapist or a doctor to Segev, just a spectator who can only shrug his shoulders. Only that it feels like my intestines are being melted inside of me. This time I was able to stop my feelings from getting that far, using meditation, all the while still holding Segev in my arms, on the edge of the bathtub, drying him and trying to sense what is wrong, saying out loud, like the buffoon I often am, "Segev what's wrong?"
He can't answer of course, not because he doesn't understand the concept of "what is wrong?", we believe that he does understand it, but because he was busy suffering his pain and then the whole world gets shut out. And then, in order to come full circle, I do what I always do out of desperation, like the times when Segev undergoes blood tests and as soon as the physician takes Segev's wrist and bends it to expose the ultra fragile veins, begins screaming and it takes three adults to hold him down and so I did, what I did then, what caused the staff at the health clinic to mumble in awe that he responded: I whispered to Segev in his ear, so quietly that I was barely certain something was vocalized. He listened, but unlike the amazing result when taking his blood he still moaned loudly for a little longer and then his expression changed, to one of attentive listening and he became quiet.
Then came the hard part.
I am alone in the house which means I have to clear out ahead of time the obstacle course set throughout the house from yesterday's 'regular living', before I try to bring Segev from the bath to the livingroom couch where the "dressing" stage takes place. But only so much can be prepared ahead of time since as I clear things out of the way, bring clothes to the couch, gauze pad, vaseline, his neck support cushions from the bedroom, the inhalation machine from the bedroom, I am leaving Segev alone in his bed. So by the time I get back to the room ((less than 30 seconds) he is seizing in a small way, but a way that stops his breathing. On top of that the seizure puts him on his back so that he can get the full-on "hey look at me, I'm choking on my phlegm" experience. Each time I have to carry some equipment back and forth, more so in the mornings, he is seizing and choking, despite the anti-phlegm treatment at night. Now you can see how we can get to up to 150 seizures a day.
I am sitting on the edge of the bathtub with Segev wrapped in an enormous towel and he is smiling and locking his jaw open and the air is rasping staccato in and out of his lungs. I need to transfer him to the living room and the question I ask myself is, since I have an inflamed tendon in my shoulder, do I take the suction machine with me in one hand, tucked under Segev's legs and then carry him and it together to the livingroom, or do I make it easier on myself and a bit safer for Segev, leaving the machine but then have the consistent situation arise that after I put him down on the couch and arrange cushions so that he won't fall off, I have to dash madly for the machine as he invariably coughs (read=chokes) and risk further ill health.
I decide to take the strain on my hurting shoulder and bring Segev to the couch. Along the way the suction tube falls onto the ground so that msut be replaced. I quickly have to put his diaper on, vaseline around the g-tube, pad, shirt, (while he flails in seizure. For those that do not know, it isn't Segev trying to help nor trying to resist, merely one of about 150 seizures he has in a day) trousers, suction. I transfer him to his chair and would normally start inhalation therapy again but his breathing is reasonable since his 4.30 session and he is bringing up phlegm every few minutes, so I can put it off a bit. I prepare his morning ketogenic meal and prepare his medication, ground up between two large spoons. I put the medicine in the large feeding syringe and give him, noticing that the coconut cream from making his meal has left a residue inside the tube. Segev comes with me to the livingroom from the kitchen and I transfer his meal and feeding equipment to the desk. I go back to the kitchen for my coffee and on the way pass the dining room table. There I see his large spoon with Segev's medicine on it. Wut? Dementia is settling in my brain, I kid you not.
When I went to the kitchen to get the syringe and fill it with water, some of the coconut cream left from his meal coloured the water white, the colour of his meds and my brain then took a shortcut, thinking I'd already put the meds into the syringe. Pretty nifty, no? I give him his medication after taking the excess air out of his stomach.
Segev is quiet and says good morning to Pluto and Pluto barks ( in my best barking voice) good morning to Segev. I begin giving him his meal and take a sip of my coffee. Or is it the other way around?
Elapsed time: One hour since getting up.