February 04, 2011

No strength for emotions

Gaunt is the new Happy

I spent the night again, without sleep of course, because when I arrive in the morning it is difficult due to traffic to get to hospital in time for the morning rounds. This was a bit of a rough night for Segev, but the pain medication does help him.

There are several theories flying around; some physicians are leaning towards either developing or functional bowel obstruction while others cringe when it is mentioned. It still isn't clear whether the severe dehydration already began in hospital or was a direct result of the cyclical vomiting of Tuesday. 

I can feel certain things wrong with Segev but it is rather vague. The medications also mask some of his normal reactions. He has moments of wakefulness but is for the most part non-responsive, despite not being on any consciousness suppressing drugs. 

His ketogenic diet, so narrowly and precisely administered, keeping him from seizing, is out the window because of dextrose in his continuous iv. Paradoxically he is not seizing but this is more disquieting: he has been seizing every day of his life since the day of his birth and he is non-responsive to unseen-until-today levels. When the doctor took blood this morning, incising a vein on his left arm for the seventh time this hospital stay, Segev did not react in any way. No seizure, no startle from the pain, he shows no sign whatsoever of arousal from his nethereal slumber.

He is getting double the amount of fluid he normally would get.

It could all just be a convoluted construct of coincidence, what is happening to him. He could have caught a bug and gotten gastroenteritis in tandem with the diarrhea from antibiotics. There was most likely not enough fluids given him during the hospital stay. There is evidence of reversible  kidney damage. His very low potassium level may have caused the appearance of a developing intestinal blockage. The bizarre lack of seizures, which would make a normal parent jump with joy is simply sinister. Every day a new cycle of shifting doctors and nurses juggle the facts of Segev's condition and come up one ball too short. Reports are poorly kept or incorrectly presented. Information is discarded as useless within the narrow spectrum of investigation.
If the very description I am giving of the situation appears cryptic, imagine the swirling multitude of medical practitioners who see nothing urgent about Segev's condition.
Certainly my own level of perception is occluded by sleeplessness. 

Segev's stomach was quite hard. That is, for him. It wasn't as though his stomach was a piece of granite, but certainly a very drastic change from his usual stomach. I called the doctor on duty in for a consult. After palpating his stomach she pronounced it 'completely soft'. 
It is a regular state of affairs for me to palpate Segev's abdomen upwards of thirty times each and every day. In absolute terms she may be right, but the context is change in Segev's condition, even relative to the ten days in hospital. This was lost on the doctor.

So, there is really nothing new to report. Patience is something I have little of when it comes to my children's health. Everything right now is a question mark, open to interpretation. I am making decisions, changing certain small things, instilling, I hope, a sense of concern in the medical staff, without coming off as hysterical since with Segev the swing of the pendulum can be catastrophic.

Everyone of you knows the inside of a hospital is the last place you want to be. It's depressing, dreary. The antiquated state of the childrens department in this particular hospital contributes to this feeling. Every day is long, long hours of watching. Every day new faces come and go, the noises of babies, children, complaints and machinery constant reminders of ill health.
Cracks are sometimes visible in my mind: driving home in the rain in heavy traffic, maddening callous drivers cutting me off I think, 'fux it, I'll crash into him to show him what an idiot he is.'

I'm off to the gym for the second time in a month since I simply cannot sleep yet. I seem to need much less sleep but then it shows in the pictures that this is an illusion. Perhaps the ship will right itself again, as slowly and surely as the pull of gravity, leaving me to wonder what the hell this was all about. If I feel any more on an uneven keel, I'll let you all know so that you can berate some sense into me.


  1. Eric, remember to step outside and ground yourself from time to time. It will help with your energy and keep you focused. Still with you and Segev.

  2. You are right Claire. When you go through hard circumstances your fears are revealed, mine is letting go of the illusion of control. I'm still that six year old who wanted to be God.

  3. Is there someone who can bring you good food to the hospital???

    Thinking of you both.

  4. Thank you for continuing to update us. ((())) My heart breaks for you and yours and I offer my hopes up to accidental cosmos that things will get better.

  5. I think going to the gym is an awesome idea, really proud for you doing so. Something in Sharon Dzialo's book "ceramic to clay" struck a chord with me, of make sure you do something for yourself/take time out. Sending more love your way, huge hugs oxoxoxo. The gym is fabulous release for me x

  6. No wise words here, everyone has pretty much said all there is to say. Just want you to know that my thoughts and prayers are still with Segev. Hope he gets back to baseline soon. You are a remarkable father.

  7. Hoping for deep and gentle rest for Segev and for you.

  8. Like the others have said. Time out is essential. It will give you back your strength. You mentioned the lack of seizures, and this is something we have experienced in the past during hospital stays. It is eerie to say the least. Especially when you are used to daily seizures. I offer no explanation, just that is something that has happened to us to.
    How will Segev go getting back into ketosis?
    Always thinking of you and hoping Segev is back to himself soon x