We made the trip to the city to see the pediatric ears-nose-throat surgeon. After half and hour of going up and down three elevator towers in the mall/office building, after the sixth call to the secretary that, no, I cannot find it, that no the office is not to be found on the second floor anywhere she says to me, "where are you?".  

"City centre, where you told me the office is on the second floor".  

"No, Sir, you are mistaken we are in the building across the street called 'the doctor's centre'."

 "Go outside" she says. "Go out of the city centre"

"Alright."

"Leave the city centre" she adds. "Go out of the building you don't need to be there"

"Gotcha", I respond.

"We're not in city centre, Sir, you have to.."

"..go out of city centre, yes I understood that".

"Across  the street at the back there is an elevator, we're on the second floor."

"Fine", I sign off.

 

All this time Segev is doing well, he hasn't complained even once yet, his breathing is of course very good since we are going to see a surgeon about cutting a hole into his throat. His wheelchair barely squeezes into each elevator, the foot rest bumping up against the far wall, the doors barely missing the handlebar.

The elevator across the street in the 'doctor's centre' is even smaller. I press the button for the second floor and up we go. There is a dentist's office there. It is closed. I don't even have to leave the elevator and press the button marked number '1'. That's where the surgeon's office is. "You are mistaken, Sir."  My blood is simmering. No mistake here.

The surgeon is amicable, listens to my protracted, if precise, history of Segev. I only discuss what is relevant to this particular operation but even that takes about ten minutes. It is my duty here to impress on the fellow how labile Segev is and to get answers about specific issues like suctioning, vomiting, air passage, vocal chords and many other things. Segev starts to complain, very loudly. His stomach has been bothering him a lot the last few days. The surgeon turns on an industrial cooling unit he picked up from Batman's nemesis Mr. Freeze. As the cold air blasts me from behind it undoes years of care in a matter of seconds.

The left arm of Segev's wheelchair suddenly falls off.

The surgeon, listening quietly to my questions answers, "well yes, with the hole there is a direct passage, closer, proximity and thus much easier actually to suction. Better ventilation, certainly."

I ask him about the issue of seizures, the fear being that Segev's violent seizures could end up dislodging the seal or tube itself.

"Yes, well, when you have that, then of course the treatment is easier, the direct air passage, proximity, better", he responds.

"?"

His mouth and eye start to twitch and he begins speaking rapidly. The surgeon, not Segev. 

Segev has left the room in the mean time with his mother because of his screaming from discomfort. I am picking up screws off of the floor with one hand, holding the wheelchair arm in my other, the surgeon has not missed a beat and is repeating for the fourth time that we will have to see about reserving a bed in PICU. He has no pauses between sentences and his twitching is getting worse.

I thank him and get up but he continues talking, repeating himself. I shake his hand, apparently the most important moment of the meeting for me since it's obvious that an understanding of Segev's needs I won't find here, but if his hand tells me something...his hand is soft and light, like those neck cushions with the styrofoam beads in them. The hand of a surgeon. He knows what he is doing with a scalpel at least, after more than twenty thousand treatment hours, I can tell.  

Segev has quieted down and the trek back to the van in the underground parking, accessible by tiny elevator, awaits. Then a half hour drive home. Lifting the wheelchair into the van is especially difficult after the surgeon's bid to turn his office into the fortress of solitude.

He agreed with me that we could still wait a little, as a matter of fact he kept saying, "well, if, as you say, his breathing has worsened considerably the last few months" as though he didn't really see any necessity to do the operation and yet he added, "of course we can't wait too long.  Hole, better airway, proximity, easier, you know".