May 14, 2013

Another kind of moment

It is understandable that there seems to be quite a contrast between the rough sentimentality of the previous post and what is happening now with my son. But in actuality it is the dense yet fragmented understanding of his precarious life that brings with it a searing beauty.

Already on the 20th of April Segev had shown signs of his lungs acting up. I applied a scopolamine patch regularly to try and dry his endless lung secretions. My concern, discussed with the CF specialist in Jerusalem was that in drying you could create less salient pockets of bacteria, growing in force, as opposed to the constant stream of phlegm, taking with it the bacteria's foothold. The professor concurred that it was a solid assumption but that in practice they did not see such cases.
Well, now they have one. Testing his phlegm Pseudomonas A. was found but his clinical picture looked good. His oxygen saturation during this time was higher than since before last year, as long as he was on 3 liters of oxygen and so, as was done many times before, I decided we would weather the storm without antibiotics.
Fast forward to some truly beautiful days with Segev languishing in a quiet civility, troubled by seizures and pains, yes, but all in all, much more relaxed.  Then a few more days, warm and dry days here in Israel, and the lethargy struck this past Friday morning, together with high fever, rasping breathing. 
I removed the patch and began antibiotics, thankfully already in house, but Segev sank into the destitution of oxygen deprivation, quickly and surely, with the previous day's conversation with the pediatrician, my chirping "Oh yes! How well he is doing these days", still fresh in memory.
Fourteen hours of near constant treatment. The entire arsenal of rubs and ointment, medication both proven and not, the constant vomiting of anything that went in, the aggressive fever which relented deep in the night only after two remedies were used concurrently, in addition to the removal of clothing and damp towels spread over his body.
Going to sleep for the first time ever with the alarm of the pulse oximeter set to a measly 87%, because it was no longer possible to regain the ground lost and hospital, discussed so often on these pages, is a case of either the proven scenario of undertreatment or the intubation and, according to half a dozen top experts, one way ticket to an accelerated demise.
Hardly could there be a situation where no one answer was more correct than others.

Now, Tuesday, he is stable. Already since yesterday no fever, the combination of treatments and antibiotic appearing to work. How do I know the scopolamine patch was, while not the actual culprit, one which must be regarded warily and thus used sparingly? In the endless number of lung infections there is always a pattern where by the time the lethargy and somnolence begin to give way ever so slightly, Segev begins the serious work of expelling liters of congestion from his lungs, which did not happen here. Simply too dry. Double the number of nebulizer sessions were needed and still very little movement in the lungs, his saturation hovering at 89-90%, without correlation to the amount of oxygen supplementation (6 liters/min added nothing).

There is a definite increase in seizure activity, possibly due to the kind of antibiotic (ciprofloxacin) but the vomiting has begun to subside and he is reacting more each day. In between all this I still had to work a full day on Sunday, since landlords wait for no man, nevertheless cancelling my last patient in order to return early (9 p.m.) and assess and address (an hour long series of treatments) while he was at his mother's, till Monday morning. Each day, in this life, I look toward a small measure of expectations which can be reasonably met, and give thanks even when those expectations are not realized. To say I am not happy about the whole thing, would be an understatement, as the expectations of my normalcy grow more subdued and distant. To remedy this I am looking for help on the outside, contrary to my nature, and surprisingly or not, publishing the 2nd volume of poetry feels like a step forward.

Healing, empowering, thriving.

This brings me to my friend P. Dzialo and his long awaited return to the world of bloggn'. Of course each one of us has their own reason for using, or not, this particular form of expression. A form that, in many cases, entails sharing of personal issues as well as thoughts about it all. For me what is personal and what is private became rather blurred as this hermetic life nearly became a fait accompli until I realized I was, after all of these years,  in the midst of a real life depression. The realization in itself was a marker that the turnaround had already begun (apparently without my prior knowledge or approval) and as Phil has done for me time and again, especially with his latest post, I look towards friendship and support to keep the story going.

1 comment:

  1. Thanks, Eric, I hope that I live up to your expectations! As long as we have known each other, we have ridden the roller coaster, more you than I. I hope Segev's "roller coaster" is small blip on the mighty screen of life...the movie will continue despite the blips. The warmest greetings to dad and Segev...always in our thoughts (and dreams).