December 07, 2011


Segev is still not well. No surprise there. He darts in and out of conscious grasp in part due to his seizures, in part due to the major brain damage, in part due to the subduing medications.
Before he became ill in January, which led to a catastrophic stay of three weeks in hospital, everything, as bad as it was, was better, was different.
In contrast to the other times he has been on the ketogenic diet this time around he is not stable in ketosis and his blood sugar is always low. This morning 58. Giving some juice gets the sugar level up a bit and I can see the difference in his behaviour, less lethargic but this increase in sugar acts like a switch to turn off the state of ketosis which in turn allows more seizures to propagate.

The seizures of consequence, the major ones where he turns blue, despite oxygen, and that last for what seems to be the amount of time it takes to come close to a state of panic, are still there. The diet can hardly be blamed as ineffective when the parameter, ketosis, is not within the margins it should be, or previously was. Everything changes but with a person as medically fragile as my son, that change is pretty gut-wrenching. If I can have a few days wherein, despite the perpetual storms in a teacup, the semblance of consistency weighs in, I am a happy man. Yes! We did it, better sleeping pattern, fewer seizures, smiles, easier bowel movements, less abdominal pain, less shoulder subluxation, more clear easy breathing...
Less is more, right? Well there is only more now. I hesitate to write this because it flies in the face of pressing memories. It has been worse. It seems I am always remembering that it has been worse, no matter what the situation.

I've changed Segev's schedule slightly to allow me to rest one night a week prior to working the next day. This past Saturday night I slept for nine hours and spent the entire day filled with energy. To some this may seem nothing exceptional but I have slept for nine hours only one other time in the last 13 years. Normally I can manage, through one hour accruements, five to five and a half hours. Even if Segev is staying with his mother and I have the opportunity to sleep my body doesn't allow more than six hours. This issue of sleep, highlighted by the metamorphosis I felt on Sunday (a work day), is quite significant. Simply put, fatigue is terrible. It influences everything, from the coordination I need to take care of my son, grind up his many medications, move him with care and alacrity, to my eyesight, memory and cognition and of course energy levels, stamina, patience, mood.

Yesterday evening, while she was studying for a math exam my daughter suggested I take a nap on the couch while she would keep an eye on Segev. I knew she would be immersed in her studies and not able to fully pay attention to the breathing of Segev, or rather how he sometimes stops breathing in his sleep but this was not the reason I opted out of the couch. Nor was it that due to my own neck problems I dread lying down, actually dread even going to sleep, because I know if Segev doesn't wake me the pain will. But Segev was having medium sized seizures every ten minutes, as he went deeper into sleep, each one though threatening to adolesce to a catastrophic one, as has increasingly been the case. 

Each evening is like that. This is in part why it is so difficult to adapt to his sleeping pattern. He wakes sometime after midnight and his last meal, requiring timed boluses to prevent pressure building and vomiting, is still ongoing. Medicated inhalation, his regular meds all have their time to be administered. So often when I am able to put him to bed, awake, it is around one or two in the morning. Then the fitful, pitiful attempts at sleep. Interrupted between five to twenty times until first light by his coughing/choking, requiring the one-two step of jumping from bed, turning on the suction and applying it with dexterity.
Turning him over to lie on his other side several times. Getting up to the pulseoximeter's alarm (which usually signifies that it came off of his finger - not difficult since it isn't a pediatric probe but rather the large adult one since the pediatric ones do not measure Segev's levels properly). Venting his stomach one of the times I get up to his cough and again towards daybreak. Changing his diaper somewhere between three and five in the morning. Or not and having to sponge bath him and change all his clothes and bedsheets at seven O'clock since the adult diapers are horribly inappropriate for a paralyzed young man.

Then the morning starts, usually at 07.00 with a whole new routine, rarely anymore with Segev vocalizing, calling me loudly. Occasionally I'll put Segev on hold for a minute while I try to straighten my neck and then, with cloudy vision I load feeding tube and syringe, inhalation equipment and of course Segev into his chair and wheel him precariously through the ultra narrow hall towards the main living area where coffee resides, the computer resides, light and warmth abide and I actually forget my dreams, dreams of sleep.


  1. ((())) Thinking of you and Segev, always.

  2. I am exhausted just reading this. I hope you manage to get another 9 hours sleep sometime soon.

  3. I'm happy that you could at least muster one good night's sleep. I find it amazing how even when we sleep (however briefly) our kids communicate to us at some point, in some way that they need to be attended to. It's that special parental umbilical cord which tells us that which words cannot. I wish for stabilization, no surprises, just a quiet calm routine for awhile. The way I figure it, the universe owes it to us. No ? Warm regards to Segev and dad!

  4. Hey Phil. I thought it was the other way around; this is us paying off some kind of debt?
    Anna, I'll sleep on the plane (jk)
    Kwombles, you are so busy there is no doubt you could use some extra yourself.

  5. That beautiful young man is moulding you through his trails and tribulations to be an amazing example to others. Through your strength and weaknesses others will be inspired, encouraged and helped. You share his story with us so that we can better understand what it means to be compassionate, exhausted, infuriated and at peace. You're opening our eyes to another place that is quite foreign to most people yet familiar to some. To the minority it is reassuring to know you're coping even though you sacrifice your freedom and your own well being. We gain strength knowing that we're in this together and have a common goal. Segev is making others aware which is a wonderful accomplishment.