In an attempt to follow through on this ambitious project to better my son's chances at survival, to address the decline in his lung function, I met with a chief pediatric neurosurgeon to determine if visualizing the phrenic nerve via MRI would give us useful information and if so to get a written recommendation. When I called the pediatric hospital out-patient clinic for an appointment I was given a one and a half month wait that has gone by surprisingly quickly, filled as it was with such a constellation of activities surrounding the issue of Segev's impending admission to the rehabilitative hospital in Jerusalem. Then the day of the meeting came, coinciding with one of two work days where house-calls to patients has been a mainstay for nearly 23 years. And I forgot about the meeting.
It was too late even to rush down to Tel-Aviv and be a last straggling father, desperate for better information and support. Kindly they added me to the following weeks' horde of parents, all of whom came with their children; after brain surgery or for consultation while I would sit quietly on the hard plastic seat in the brand new building, observing these, mostly quite young, parents with their babies, wondering what was still waiting for them as I had passed through similar clinics and trials with my son for fourteen years and counting.
What struck me most about the people there was a sense of calm and even contentment that they radiated. Still, I couldn't help but feel a brittle undertone, hiding beneath the surface, waiting for some moment to make its presence more substantial. These were problematic children, not so much in behavior but in medical status although it seems that the help they received at the hands of the Professor, assuaged their fears, as several spoke glowingly of his accomplishments with their children especially in light of the horror stories of misdiagnoses at the hands of others.
Then came a mother, thin, very 'well-kept' with make up, fashionable accessories, proper hair, leather boots and an economy of movement that shows a person who is either shy or conversely, knows exactly what they want. She was very patient with her daughter who's head shape, despite excellent body motor control showed dysmorphic features. The girl, perhaps nine or ten years old repeated every sentence the mother said and spoke frequently, asking questions that children often do about their environment, affirmations, "Are we here to see the doctor?" and a running commentary on noises and movement in the waiting room. After nearly one and a half hours of waiting the mother was showing some signs of agitation, she tried unsuccessfully to turn on the large screen television in the waiting lounge but I was surprised she hadn't brought a book or toy or engaged her daughter in some kind of game.
The girl was now sitting next to me and while she looked at me she asked , "are you my father?"
I waited for the mother to respond and she did say something which I didn't quite understand. I thought of saying to the girl, "perhaps I remind you a little of him?", out of an awkward sense of trying to help the mother, who perhaps had heard this many times before but of course only said, "hello" after the girl had turned her head back to me.
"What?" she said.
"Hello there." I offered.
Without blinking she gave me a "wassup?" but again turned back to her mother, not expecting an answer or perhaps wary of the possibility that a conversation would ensue.
"You're bothering the man" the mother said. Again I felt like saying something, to let the girl know that it was of course no bother and to let the mother know that it might actually be OK for her daughter some more interaction (there was also none between the other children but then most were infants) but then I knew that there could be a damn good reason why the mother curtailed the possibility. I reasoned that her daughter might get upset if the conversation went on, she might get confused or hyperactive and everything about the mother, because of the terse movements of her arms (though her walk was actually a bit swaying for her thin build) and the lack of engagement of her daughter meant to me, control. A precarious situation, especially in a public situation for children who might only thrive when in the comfort of their familiar surroundings, and so I said nothing at all.
I did have to think about the girl's question, "are you my father?" It might have been a random sentence, such as also regular, smaller, children throw out there, without any real context. But while she would repeat each sentence her mother spoke her observations were firmly rooted in the here and now; she never went off on some fantastic tangent like when small children slip into their own world and create narratives that are more real to them at that moment than what they are actually doing.
It seems the girl was expressing a real deficit in her ability, at least in that environment, hence the repeated affirmations in an attempt to remain attached to what she knows. Perhaps at home she would never utter a similar sentence and so the mother is able to separate the context of her daughter's identity into familiar environment and 'other'. But that in itself is not an easy pill to swallow, to realize that in certain circumstances the disorder, illness or neurological deficit, is our child's identity.
I waited for nearly two and a half hours and the neuro-surgeon, replete with entourage of physicians hoping to specialize in his field of expertise and medical secretary, called me in.
I was back out in under five minutes as he sucked the wind from my sails. Well, that may sound harsh, he was congenial enough but I guess he just caught me by surprise when he said that an MRI won't allow us to visualize the phrenic nerve and possible damage and that in any case the treatment of adhesions by debridement was "no longer really an option" and the best way to go was the recently introduced diaphragmatic pacemaker (which I had discussed with both the pulmonary professor and head of the rehabilitative hospital).
I've put in the paperwork to get (financial) authorization for a three day stay at the children's rehabilitative hospital in Jerusalem and presently am waiting on an official date for the admission (as soon as a bed opens up).
Segev continues to require close scrutiny as his seizures are never more than slightly controlled and his base saturation level, seen when removing the oxygen cannula when bathing, changing him etc, continues to drop. Over the past few days he has been complaining more from pain and I have finally had to order the vaporizer machine from abroad to use with the medical cannabis (finally authorized!), as I was unsuccessful in obtaining it by other means (lending, voluntary homecare organizations) and the normal cost of acquiring one here is over a thousand dollars. So I am anxious to try it on my son as it has been shown to benefit lung function, inflammation, pain and yes, even some seizures as well as helping in spasticity.
Last night I returned home late from work and over the phone, during one of my frequent check ins with Segev's mother, I could hear him crying from pain in the background. Because of the air raid sirens (one of which occurred while treating a patient and thus necessitated a hasty dash to the in house bomb shelter) I didn't linger around Tel Aviv to grab even a quick bite of dinner and when I arrived home to the village I hurried to his mother's house to see if I could do something to alleviate his discomfort.
I have been blessed with certain abilities to be sensitive to the origins of discomfort others feel and so as I was saying hello to Segev upon arrival, (and he smiled firmly as his eyes lit up before returning to complaining) I instantly felt that his left sacro-iliac joint was out of place as well that he had air which needed venting. The joint manipulation didn't go easily this time, necessitating a different approach, which immediately released it, causing a big smile and some loud vocalization. I continued to examine him and while I massaged around his lumbar spine he gave me a dreamy, contented look, that filled me, for at least that brief moment, with tremendous pride.