September 03, 2012

No surgery. Again?!

It might be a combination of having treated my mother many times with always being aware of her physicality but as I look at pictures of her, passing constantly across my computer desktop I can remember the feel of her wrists, the texture of the skin, the weight of her hand, where the bone rose up on the skin. 

Always soft wrists and gentle hands, often on my shoulder. That soft and gentle warmth is what I would want my children to remember about me but as it stands presently, in this overly intense endeavor to raise my son's quality of life, slow down its degradation, prolong his life, I feel there is hardness where there should be supple determination. Brittleness even, instead of that sense of complete settling and focus.  

There is change for the better, as I see it. There is a bit more calmness, a bit more restraint. There is also a deep state of melancholy that has me feeling the desire to weep, most of the time. Is it time to weep? I'm not certain, putting it off perhaps indefinitely.  

As I went for my fifteenth visit to dentist in four months this morning, all still for that one, problematic, complicated tooth I was dreading the pain but much more nervous about what stands before me in regards to Segev's operation.
Yesterday I took him to have an ultrasound done of his diaphragm to determine if indeed it is paralyzed. It is. So first thing I mailed the pulmonary doctor the result of the test and asked if I should come in to see her. She sent a reply immediately with her secretary's number. The secretary could only give me an appointment in three weeks. 
"What about today?", I offered, hoping she would say something was available, anything after my dentist's appointment.
"You can come between 11.00 -12.00, but with payment authorization from your health care provider". 
That was good, certainly. Now on the way driving to the dentist I called to arrange it but they reminded me from the central answering service that i first need an invitation either from the hospital or a referral from Segev's doctor. Everything goes through the central answering service, you can't call the clinic directly, and to ask them to message the clinic to call me would mean getting back to me the next day.
One of the clinic nurses provided me with her cellphone for exactly such situations and when I reached her I was happy to find that she was working at the clinic today. She went into the physician's office and I spoke to her, explaining the meeting was in a matter of hours. She wrote the referral, the nurse took it to the office and asked them to forward it to the committee for authorization.
After the dentist I called the answering service and they faxed the document to the office in the respiratory clinic in the hospital.

Complicated, still, but a pleasant moment when you need the system to work and are able to make it work with some 'above and beyond' help from people who care.

The meeting with the pulmonary specialist was interesting in that it changed my perspective. To recap, Segev was admitted to hospital for a tracheotomy as his breathing was more and more labored, seeing lately a period that he was on large amounts of oxygen for thirty straight days, occasionally without result. But then I did what I had not done for nearly six years; had a chest x-ray made of Segev.
The rationale had been, 'what new thing will they see, his condition is known' why I hadn't taken him earlier for a chest x-ray. His bouts with pneumonnia and bronchiectasis had improved over the years. True he had severe paroxysms of pain, but there were large swaths of time in between them, months even and his latest bout, the worst of all his life which had lasted three months were coming from his intestines and pressure in his stomach wasn't it? We did a stomach endoscopy to check on that and everything was fine. An abdominal CT was scheduled until it became clear that, as was previously the case the test had to be performed with overly large amounts of contrast injected in his overly fragile veins. They've never held even normal fluid administration for long, everything eventually always leaking into his arm, so the CT was out.

Now the x-ray has changed everything. 
He has a paralyzed left diaphragm but the question is also since when? What caused it? This is relevant for several reasons, one of them being the prognosis for success that surgery to 'correct' it will have. There is no real solution other than tying the diaphragm down. It won't start working again. There is such a thing as a diaphragmatic pacemaker but it is only used when the paralysis is bilateral. Normally this surgery is only performed when a child is ventilator dependent. This is also rather relevant since no matter how I explained Segev's ailments, previous surgeries, vastly increased kyphosis, extreme bouts of pain, in short any and everything which could have a connection with this new found condition of the diaphragm, the pulmonologist was adamant it could not be caused by the raised diaphragm and intruding bowel. She went as far as to say that even bowel symptoms were not influenced by the displacement thereof.

I'm leaning towards believing her, though I desperately tried to cling to my theory of it being responsible for the majority of Segev's discomfort. Of course I will be seeking further opinions, but have studied the matter fairly well, what she said falls in line with the experience of research done in the area.

One thing we did agree upon was the fact that the issue has a strong impact on Segev's breathing or ventilation. His oxygen stats are occasionally high enough to know that he's not (yet) a candidate for 'CO2 retainer', which severely impacts longevity. His left lung does close at least partially several times a day necessitating oxygen supplementation and intense physiotherapy. His breathing is often labored, but that comes in part also from the blockage to his airway higher up (hence the need for the tracheostomy).

The real complication that awaits, what I see as motivation for going ahead with the surgery, are severe pneumonnia's that don't respond well to treatment because you have a lung which isn't working, partially or completely closed to air. A little greenhouse for klebsiella and pseudomonas in other words.

But then comes the fact, as reiterated by the pulmonary physician, that the improvement in ventilation is very minor and that often the diaphragm does not remain in place after surgery. It might not help him breath easier, although perhaps 10% increase now, equals a whole lot of prevention for later. It might take a few years for the diaphragm to release again. But, Segev can also come out of the operation unable to breath on his own.

So this issue is not settled, the course of action uncertain. The risk of the surgery is great, the reward might not be measurable. What is measurable is that Segev's breathing is getting worse. 


  1. This post leaves me shaking my head at your perseverance and strength. I can only wish you more and ease ahead. For Segev, too.

  2. Oh Eric, so many variables - such hard decisions. I feel so sorry that you are given so many enigmatic outcomes. It's so tough. Then you wonder why you can't soften. You need that veneer to keep you going. That soft hand on your shoulder will never go away.