March 11, 2011

Excerpt from the book

June 2009
Hospital waiting areas are always filled with an eclectic mix of people. The loud ones, oblivious to the fact that they are not actually in their living rooms anymore with the television blaring. The talkative ones who are incessantly in conversation either on the phone or with the person accompanying them. The ones with children who let them wreak havoc as though the waiting area is a circus arena but then reprimand them harshly for not tucking their shirt in or asking for something to drink. The nervous ones, prone to inappropriate mutterings about other people's business or children.

This time I brought Segev to see a senior physician who was both an ear, nose, throat doctor as well as a mouth and jaw reconstructive surgeon. I needed his opinion concerning the options for  Segev in dealing with his breathing difficulties. Late in 2006, after Segev had his vagal nerve stimulation device implanted he came out of the surgery with paralysed vocal chords. The head of the department for ears, nose, throat in a children’s hospital investigated and saw clearly that the floppy vocal chords could no longer coordinate normally and the resultant confusion caused Segev’s breathing difficulties which manifested as regular choking and a clearly increased effort. 

For the ride to the professor, who came highly recommended by Segev’s coordinating pediatrician, I asked Noa to come along to be Segev’s caretaker. There hasn’t been one time that she hesitated to come along, never asking if his mother couldn’t go instead, how long would it take or whether she had to.
Sitting next to Segev, behind me, I could rely on her to perform suction as needed, adjust if necessary the position of his head, hold closed his jaw to improve breathing, talk to him and squeeze his hand if he had a seizure and notify me of anything out of the ordinary. All this from a fourteen year old girl. 
The heat was incredible when we got out of the car, it being June. I had to drive around the massive parking lot several times to find a spot as even handicapped parking was taken, sidewalks were taken and when finally after ten minutes I could occupy a space becoming available it was such a tight fit that I could barely get Segev out of the sliding side door.

It was a good thing that I brought with me an x-ray of Segev’s skull from not long before as the professor didn’t even examine Segev, making his diagnosis based on his visual take alone, which hardly filled my expectations after the long drive to get there, after the month long wait to get to see him. Physicians should assume that a person coming with such a heavily compromised child has made a pilgrimage and welcome them with a tribal dance, pot of herbal tea or something other than a laconic glance over his reading glasses.
“Do you know why your son has trouble breathing?” he asked me. I recited the problem with his vocal chords and began to illuminate the good doctor about Segev’s massive kyphosis, hunchback for lay people, but he interrupted me.
“No, it is because of his receding jaw and collapsing soft palate.”  This was what I wished to say in continuation but I  suppose the professor had no time for my convoluted way of expressing myself.

What surprised me, even demoralized me for some time was his prognosis. He was in concurrence with all the other physicians which had stated that Segev needed a tracheotomy. It might not be uber urgent, he said, but it was inevitable. I was disappointed because I had hoped he would bring something new to the table, even surgery that could correct the issue. He was very clear about this though, Segev was absolutely not a candidate for reconstructive surgery, nor for positive airway devices that help maintain pressure in the pharynx. I dutifully thanked the professor and we left, back to the furnace of summer weather. Shutting off Segev’s pulse oximeter, removing him from his wheelchair and maneuvering him into his too small car seat. Noa took care of the suction machine and I lifted the wheelchair, replete with oxygen tank, into the back of the minivan.

During the drive back I wondered at this sense of disappointment I had, thinking that I had no expectations anymore for finding conclusive outside help to improve Segev’s condition. But I realized the disappointment was there because I refused to give up hope.


  1. Wow, that last paragraph is so simple yet so profound. Thanks for sharing your writing with us, and a glimpse into your life with Segev. Your love for him just radiates.

  2. "Physicians should assume that a person coming with such a heavily compromised child has made a pilgrimage and welcome them with a tribal dance, pot of herbal tea or something other than a laconic glance over his reading glasses." My favourite line.

  3. It appears that all the doctor's agree, including the great one you found, so when you say you have "... no expectations anymore for finding conclusive outside help ..." shouldn't you say you have no expectations anymore for "accepting" conclusive outside help?

  4. @Anonymous. If you are a blogger yourself you would understand how answering a comment bringing phrases into question is a sign of respect and thus commenting anonymously is counter productive to a positive discussion.

    If you read the entire sentence again you will read what I actually wrote, which is 'THINKING that I had no expectations..." I thought i had no expectations of finding help but the disappointment made me realize that I do have them because I still had the hope that some doctor could help with this SPECIFIC issue.
    The fact that "all doctor's agree" is irrelevant since I did not go to him in order to test the other doctor's advice but rather seeking a NEW option to treat the problem. As it turns out this new option (reconstructive surgery) did not apply to my son.

    "shouldn't you say you have no expectations anymore for "accepting" conclusive outside help?" In a word, no. I accept the opinion of the many physicians that have maintained my son needs a tracheotomy, there remains a discussion though as to the TIMING of such "help". As long as I can postpone such a serious, even life threatening procedure, I will, this in no way reflects on my accepting their medical opinion.

    Furthermore having no expectations (of myself) for accepting help would imply that I consciously choose not to accept help irregardless of whether it is helpful or not.