January 30, 2011

Said and me. Father of five, full of love for his devastated son, brother-in-arms

Noa has been an enormous help each day, coming by bus from school or with rides to be at the hospital

Finally some reactions. Also complaining from pain, more mishaps but much fewer seizures
More of the same today: improvements with small setbacks. One of the children in the room developed chickenpox so Segev and our neighbour, both seriously at risk children, had to get a special vaccine of antibodies through his iv. Blood pressure measured every ten minutes in case of an anaphylactic reaction. One iv in the left hand, one in his right hand, turning him over this evening with Noa's help, the 'faucet' connector got caught and bent backwards so it was ruined and had to be removed. Fortunately they stopped the intravenous antibiotics because the bacteria found was not Pseudomonas as well the steroids have been stopped and so only the sedation iv is needed.  His lungs are very clean and there is only the regular rasping that has become like music to my ears, signifying Segev's 'normal' breathing pattern.

He is getting back into ketosis while his soft moans of pain and discomfort definitely pinch my heart each time but at least he is trying to communicate. From a complete lack of activity his bowels, due to the antibiotics are, shall we say, overactive.

I was even able to put him, with all his iv's, in his chair for a bit, trying to even out the pressure on his body, for so many days crassly chained to his bed by medical tubing and it seemed for a while as though things leaned more towards normality and less towards the severity of the situation.

To sum it up there is improvement and he no longer appears to be in danger. The horrible experiences of hospital stay perpetuated through the numbing effort to convince and cajole, argue and suggest, question and answer. It will only add to the emotion of a future stay, just as the previous adventures have but I am so getting ahead of myself.
Watching the boy across from Segev bleed profusely from his tracheotomy has filled me with fear about such a procedure for Segev.

I'm ready to take him home because really, there is nothing at the moment that can be done for him and the sooner he is back in his natural environment and his baseline, the better I'll be able to assess how this life threatening incident has effected him and whether that affect is permanent or, worse still, that this episode is a sign that he is deteriorating beyond the point which I have tried all these years to keep him from.
I am not searching for bad things but I have to maintain the right sense of perspective if I don't want to lose anguish to despair. 
I never want to despair and this can be accomplished by having a good sense of what is coming. Despair robs you of your ability to function and I will not give in to that.

But, again, I don't want to get ahead of myself. Segev has improved and will likely come home in the next few days. Then I will be able to concentrate on worrying about lost income and unpaid bills since the word respite may as well be something from a Tolkien book. 

What I mean by that is not to sound full of self-pity, but rather that it has apparently come to the point where self-preservation is going to have to take precedence over what has been my priority until now.

I will end by saying that I have never in my life had the experience of being drained and wrought with worry  yet felt suddenly a sense of greater calm and due purpose come over me, which I have no doubt, comes from the concern shown by many, something which simply has not existed previously in my life.


  1. I am so happy to hear of this respite -- however tenuous and fraught with worry --

    You and Segev continue to be in my thoughts and prayers. His sweet face haunts me a bit --

    Love and peace to you both.

  2. So glad to hear of improvement. I hope that it continues and you can get home. Sending you love, prayers and strength x

  3. It's true...our children are best served at home. I hope for strength and good fortune to come your way.

  4. You and Said, so touching. Good fathers. Hope both children can go home very soon.

  5. Hope you both get to go home soon, sending more hugs, xoxoxoxoxooxox Love Mel xxx

  6. Very happy for Segev and yourself; home is the place to heal and obviously the sense of calm comes from a father's knowing....

  7. Hi Eric, pleased to read to better news, but even so the doctors nurses etc in the hospital or even the hospital itself, was and is there if you are in need of it. Safe journey home and welcome Zegev in your own surroundings. hugs ingrid

  8. Thinking of you. Hope you get to bring Segev home soon. Really liked seeing the photos. ((()))

  9. I used to live in dread of hospitals. Here in Toronto the care is exceptional - but the medical system in general is so attuned to acute care that the environment perpetuates one crisis after another.

    I know your journey right now. I have many identical photos of Owen! And I know the hospital is no place for real healing... I hope you are both going home soon.