December 05, 2012


I clutch the wall as all hope leaves me, so as not to fall into the street where wet cobblestones wait to frame my anguish, my wanton crime with just punishment born of a sentiment that relishes not only love but rather carelessly, life.
                              - From my trip to see my mother, December 2011

Wednesday night in hospital, as I wrote earlier was terrible because Segev's oxygen level went down and his CO2 level went as high as 47. Back home, Friday morning, while he was at his mother's she called to say he was down again and increasing supplementation wouldn't raise it. I rushed over and started with the ambu bag which had little effect. Besides the collapsed/obstructed/non-functioning left lung Segev suffers form upper airway obstruction because his body doesn't maintain a normal ergonomic relationship; his jaw recedes too far back resulting in airway obstruction.
When you see a photo of Segev it is invariably with his double neck collars, a design I instigated to prevent the tracheostomy by holding his jaw in place but which no longer suffices. Before and after the ambu I did chest compressions but this also was not helping so I took him out of his wheelchair and put him on the couch where I could get better access. Because of his diaphragmatic paralysis the area between the shoulder and neck rises up and becomes particularly hard and finally I found that (in combination with the other activities) pressing there in sustained fashion caused enough change that his oxygen level slowly began to rise. It only took about thirty minutes but I was not much relieved at the thought that if two episodes had occurred so close to one another, an additional one could be close and signal a significant change in the game.

Monday night.
Already in bed, but not quiet at all, suffering constant small seizures with twitching of his hands, a sign normally indicative of a mounting phlegm accumulation. Then at 01:30 the pulseoximeter started is screeching. He was seizing frequently again and so I felt that he had reached the point where a dose of diastat had to be given.  I fell back onto the bed, exhausted, trying not to get angry, trying to focus. The alarm started going off again because his oxygen dropped. I was so tired (was able to put him to bed only at 00:30) that while I tried the compressions and saw a slight improvement, I did not go directly to the ambu bag or the applied pressure on the shoulder area. After five minutes the alarm would sound again. And again and again.
Finally the bag was used but to no effect. Having him lie on his other side to release pressure from his bad lung also did not help and for him to lie on his back I needed another person with me, with no guarantee of improvement. I increased oxygen to the max and tried pressing on the area between his shoulder and neck. For a few minutes things would settle down and I would plop back onto bed hoping he would sail through what was left of the night. The seizures kept on coming.
Through all of this he was not responding. His breathing didn't appear stressed and his color was fine, despite frequent dips to 84% and even lower. Even vigorous chest compressions didn't wake him but it did immediately initiate another small seizure.
Because the oxygen wasn't going right I didn't feel comfortable in giving him another diastat until 04.30, enough time having passed that there wouldn't be an accumulative effect, as I have seen happen several times in the last few months. The seizures finally diminished and then I called my daughter into the room and we worked together to stabilize his breathing. Finally at 05.00 the situation turned around. My daughter went back to her room and I achingly climbed into bed. Five minutes later the alarm began again. I worked on him for another hour and at 6 O'clock he was stable, oxygen levels normal (with supplementation) and I had two hours to sleep before it was time to start his strictly controlled regimen of medications and so on.

Segev side view

Those two hours felt as though they passed in a mere five minutes, I got up and prepared his meds, administered them through his gastrostomy tube and then snuck back into bed for another 45 minutes before slowly starting the process of getting him up. Due to the diaphragm paralysis his intestines have moved upward to his chest and since they compress his stomach there is little space available for food. This necessitates giving him boluses of food nearly one hour apart (a kangaroo is impossible due to his seizures/flailing arms) and so keeping to a schedule becomes critical if I don't want him either to vomit from excessive pressure in his stomach or suffer malnutrition. This reminds me to get a soy based formula again so that I can give him more nutrition in between meals.
Functioning the next day is haphazard at best. I need to muster focus and am having a hard time of it. There is nothing that I dread more than to make a mistake in the day to day care, mixing of medicines and such, that was established with such delicate intrigue, the balance of his condition wavering as it does so often.


  1. Holy mother of god!!! I can feel your angst in the U.S.A. We just went through a small, by comparison, bout with Adam with feeding, breathing and pooping issues simultaneously ... almost calm after 3 hours. I perpetually stand in awe at your instinct about what to do when necessary, and your ability to muster the inner reserves to do it. All, I can say is I stand in awe...I will send whatever positive energies I have and light white candles for a calm and speedy resolution to this crisis. After 14 years, I am still learning the communications of my son's body; somehow wife is a bit better. I'm learning...a lot!

  2. Eric, it's difficult to know what to say to you after reading this post. I know you share Segev's story because his story and your journey need to be told and maybe there isn't anything you need (or expect) to hear in response to sharing his story. I hope it brings you some comfort to know that I read what your write, that your writing impacts me and that my heart hurts for all that you and Segev have to endure on a daily, hourly, and minute-by-minute basis. I'd say that I can't even imagine, but the fact is, I can. And that's why I read, I hurt and I care.

    1. Ann, in "les uns et les autres" Genevieve made a very interesting comment about what pains us and how it can consume us as well. Certainly in situations like I described I feel the full weight of responsibility and it feels as though that exact moment when you are trying to break a piece of hard plastic with your hands. You can feel that it won't give anymore and any further pressure applied will snap it. That's the feeling of the moment. The snapping of course isn't me breaking but rather instant not only when what I do can no longer affect my son's well being but when the serious, fast decline will start. When all the philosophizing in the world will be brought down to its knees. The moment is coming closer and I am finding myself ill prepared. Just as, a year ago, I went to see my mother off, to allow her to let go...This month is therefore, leading up to her one year anniversary, especially difficult.
      But like the title of the post says, these are merely observations and you and I stand as looking through the glass of two passing trains. The fact that I know you understand, the fact that I know there are many others out there, overwhelmingly so, is indeed a worthy consolation, now and in the future.
      How sweet it is to see my son oblivious to this process.