January 26, 2011


I slept for one and a half hours after coming home from hospital, I've prepared two ketogenic meals for Segev in case it seems pertinent to give him as the hospital does not have a ready made ketogenic meal for lactose intolerants.

The ambulance ride to the hospital is always the same, like in a movie, only minus the rain. Time always slows down so that it appears to take twice as long.

Now, at home for a few hours of rest out of the danger of collapse, I've not much to do besides scour articles and research to see that I didn't make a mistake and that I have the necessary confidence backed with data. I need to write a bit because anything I don't write now will otherwise be gone.

I've already made a different kind of mistake, quite big, in that I have the cellphone number of the pediatric neurologist and didn't think to give her a call.
I was up the entire night, the seizures beginning around midnight after a beautiful day. A gift of a day, where I saw Segev bloom; smile and react after this grotesque two weeks of ill health and fatigue.

His seizures did not react to treatment of any kind. They started coming every few minutes.
I don't want to go into the treatment at hospital for now because it might turn out to be very frustrating writing about it; I need to stay calm and focused. Screw that.

Segev's condition is not yet improving and I have been able to change some of the treatment; what really appear to be just nuances but without which the direction can head down a perilous path. This is no over dramatization.

The newer younger doctors are tough and I am a bit older and much more tired this time around. If they sense you are trying to lead their thinking somewhere they immediately pull out their bag of dirty little tricks, "but you're not a doctor are you?". "Remind me again, who are you?" "Just because we find bacteria in the lungs isn't an indication to start antibiotics, you know that right?"
Just a few of the gems. I have to repeat myself several times to the same person in order to make things clear. They go off and make decisions but my intuition tells me something is wrong and I run after them and then have to be very diplomatic in again opening the topic of discussion to ascertain whether or not they really digested the factual medical information I just gave. They didn't.

So it is going. I am more calm than I thought I would be but this is merely will power, I feel the urge to shout. After a discussion the medicine is decided and the physician disappears. I speak to the nurse and she knows of nothing. "But I just spoke to him and he said he would write the order". Puzzled looks. "I'll check". After twenty more minutes of Segev lying convulsing, purple the nurse gets back to me. "It's being ordered now". 30 minutes later, stern inquiry on my part receives, "the pharmacy hasn't authorized it yet". In the mean time the neurologist arrives, is convinced to add another drug and two hours later it arrives, Segev still seizing.

How can I write any of this I am asking myself. I want to scream, but can't let myself. The only path here that will help Segev is if I put my mind in sync with the medical staff who are part of a system that has schedules, rules and dozens of patients to see, milling about, moaning, seizing, burping, stinking. A constant maelstrom that they have to negotiate according to protocol and all in good time so they can do their job without having the urge. To. Scream.

My daughter informs me that there is now an astounding 10 minutes between seizures. He has been seizing for 16 hours so far.
We are all doing our jobs as best we can and then we say, yes I say, Inshallah, God willing because we have to admit, there is more going on here than we can control.


  1. I am just catching up...I had no idea this was going on. I can only offer prayers and support from far, far away.

  2. I think you are doing a remarkable job. Screw the doctors and do what you think is right. But you already know this, Im just there with you and continue to send Segev and you (((Healing White Light))). I will add you two to my prayer chain.

  3. Sending you one of my hugest "bear hugs" the one my dad of muscular build says cracks his ribs lol to you and you family and a very gentle one to Segev. I admire your innerstrength and how you stand up and fight for Segev.

    Love Mel x

  4. Sending you and yours my heartfelt hopes that all will be well, that you will know you are cared for, that Segev is in many people's prayers, thoughts and wishes. ((()))

  5. My warmest and strongest thoughts and intentions for this crisis to pass...a parent's intuition is far superior to the book learning of most MD's. Medicine without heart is never as effective as heart with parental devotion. My best for you and Segev

  6. Still thinking of you and praying from afar. I agree with Phil. Don't ever for a second doubt yourself. You know Segev better than anyone. Trust yourself. Hoping he has stopped seizing by now.

  7. I am lighting a candle this instant, closing my eyes and saying a prayer for Segev, for you, for those doctors.

    Love and peace to you from far away.