January 16, 2016

raw update: nothing is the same

January 5th
It's difficult to know what my son is experiencing right now. Every aspect of his condition has worsened dramatically over the last month. The last week has been hell. While we bombard him with multiple pain medications, it's true that he suffers much less pain.
Using opiates is not a new idea but one I've always vetoed until recently, relying instead on standard pain meds and cannabis. None of which significantly impacted his severe pain. The fentanyl does that, with reasonable consistency and efficacy. But there is a price which we are all paying as Segev's condition continues to deteriorate.
The return of double pneumonia, (which had been already been treated mid december) is exacerbated by the drying and cough suppressant effect of the opiate. Less coughing means the excessive production of phlegm remains in his lungs, lowering oxygen levels despite supplementation 24/7. His seizures are through the roof. This morning he once again entered status epilepticus (a life threatening condition where the seizures simply won't stop) and I resorted to sedating him with subcutaneous injections of Midolam (used as general anesthesia in surgery). It barely did the trick even after repeated use. 
We've been fighting to raise his oxygen levels since yesterday afternoon, with little to show for it. He has GI bleeding which is being treated. Only one lung functions and it too is becoming tired. But yes, he has much less pain. 
Sleep comes in fits and starts as I launch myself from bed every twenty minutes or so, awakened by the sound of the oxygen alarm or the sound of him seizing. His upper airway is collapsing and he stops breathing every so often until I pull his lower jaw forward to allow air into his lungs. Even then his oxygen saturation remains low. His ability to regulate his body temperature began failing a few months ago. His skin is burning hot but the core temperature is steady. He's drenched in sweat most of the time despite fever medication thrice daily. His bladder doesn't empty and I resort to manual pressure but this only helps when he is conscious. The last time he smiled was ten days ago, maybe more.

For the past 18 years I've only worked two days a week, the rest caring for Segev. I feel crushed under the strain of providing care and pain management to my patients while suffering further from my own health issues, once again nearly collapsing to the floor from both physical exhaustion and chaotic emotional state...

How, under an even more complicated regimen...  

We discuss the options; a tracheotomy to help with the increasing upper airway constriction. The downside is his slim chance of surviving surgery and the inevitability of being on a ventilator if he does. The ventilator might help him, giving his body a reprieve from the effort of breathing, since over the last two weeks he is mostly dependent on 'abdominal breathing'. Imagine that every breath you took, every single one, was as difficult as sucking mashed potatoes through a straw. Now add all the other problems. But a ventilator (if we were ever to get out of the hospital) in my son's unstable condition, presents its own difficulties and drawbacks. Whether infection or him possibly ripping it out of his throat during a violent myoclonic seizure, to the technical issues of making adjustments to the ventilator itself when the conditions inside of his lungs, where the altered biomechanics and severe infection will have you chasing your tail every minute of each day, appears an even darker path.

... all options have always been openly discussed and decisions are formed in consensus, each adding their own perspective and concerns, while our beautiful little man sits in his chair, oblivious, each slow breath counted.

I admit to myself that I am less capable. Segev's brother and sister are rallying, as always, and I simply could not do without them. By myself, stumbling dizzy from bed to grab the suction catheter or grasp his flailing arms as he seizes, continuing throughout the night with interpulmonary percussive ventilation, nebulizer inhalation, respiratory physiotherapy and administering sedation that further suppresses his breathing gives diminishing returns. And now we find ourselves in a maelstrom of confusion. The complexity, the interactions. Because you simply cannot know.

From the corner of my eye I can see my kids struggling under it all and I think to myself, will the good also be remembered? Will this give them tools few have, or break off pieces never to be found again? What I do know is, I am grateful and we cannot navigate any better than we have done.

The focus now is to make the best decisions, or more precisely, to live with the consequences.


  1. I wish strength and peace to all of you.

  2. Yet you do find the time and energy to write about this, which is not so easy because it is so far from your readers' experience. Apart from having news from you and Segev, I am always interested to see how you manage to find the words and grammar that brings the reader close to you both. Thank you!