January 27, 2011

It surprised me to realize that I actually had convinced myself that I could keep Segev out of hospital.The flu ravaging his already deprecated lungs and body last week, the vomiting and to add the antibiotics purging qualities, combined with the continued use of the ketogenic diet's oily base made it impossible for his anti-epileptic meds to find a foothold in his body.

It looked for a few moments that Segev was improving but that was not the case actually. He even had three hours at one time without this unique and new seizure which would see him turn blue each time, coming with clockwork precision at either 3, 5 or 7 minute intervals.
Segev seized at these intervals for 31 hours these last two days and once again I am home for a short respite. There is no doubt this is physically the most demanding thing I have gone through with him, having been on my feet for 53 hours with only the one and a half hours of sleep yesterday afternoon.

In hospital, both between staff and staff-patient, the miscommunications come fast and steady, like a stream. Things are also done because it's time, not because of actual need.
Nurse: It's two o'clock. We either have to restart the valproic acid drip or the midazolam drip, you can choose which you think is best.
Me: No, actually we can't start just because it's two o'clock because we've need to see whether the pause in seizures for the last ten minutes takes. I need another 15 minutes to assess the situation.
Nurse: Oh.

Doctor: I understand there has been some improvement?
Me: For the past hour, since the dosage increase I requested was approved, he has been seizure free but this came after 31 hours of seizing.
Doctor: Yes, well these things take time.

Time is not something we have the luxury of wasting. Time will make its own accounts if we are not careful. Fortunately I have watched as the worst nurses did not take roost in the room Segev shares with three others. The ones I've dealt with are open enough t listen and in the end the appeasing statement, "well you know your child best" is heard often.  
In the room there is the happy normal five year old boy across from us who came out of an operation four and a half years ago with massive brain damage due to a lack of oxygen during the procedure. I've never seen a human beings limbs move as fast as a hummingbirds wings until this morning when he had his morning 'shakes'. Next to Segev is a tot who sounds like someone is drowning her at night, while her father snores the entire night away not getting up once as she cries and sputters, moaning in agony.

His iv line was accidentally pulled from Segev's ultra fragile veins, twice.

Not praying, not crying, just resting.
The kind of environment we all fear for its noise, infections, shared bathroom, poor ventilation, smells and a complete lack of being able to maintain the myriad treatments and adjustments that took years to learn and implement which keep your child in a reasonable condition.
It feels, and I've already mentioned this, that I'm slipping up, exactly as the buzz in our friends' blogs have been speaking of 'extreme parenting'.

Segev was having his dosage increased to sedate him further as result of the consultation between the ward physician (general children's ward, there is no pediatric neurology ward) and the chief pediatric neurologist (who hasn't seen Segev since actually taking in the being of a patient in such a condition is, as we parents all know, detrimental to the decision making).

I'm on both sides of the coin, as therapist and as parent so I can understand, also having worked extensively with physicians and in hospital how it all works but these slowly turning wheels are exactly why I never pursued further employment in such large systematized settings.

"These things take time", while you see the staff chatting in the corridor about a reality television show. "These things take time", since "right away", "immediately" and "i'm taking care of it" are all well known euphemisms for "when the planets align".  
Don't get me wrong, a lot of the work is done well, though rather harshly, but this really highlights how when we talk about physically and mentally compromised children not getting their dues in the education system or proper care management, we can just as well speak of what's wrong with the care in hospital's for most patients: the system doesn't like individual needs. The system allows many many people to be helped at a mediocre level but all the corners are rounded, the edges filed down. In short, when you are vulnerable we haven't figured out yet how to properly take care of you.

Going back to hospital in a moment though I won't stay the night unless I see his condtion has not stabilized as a result of the upped level of sedation. Having slept for nearly four hours after "The 53", as I will remember this most recent stint, I still don't feel up to snuff but it will have to do.
The father of the boy across from us, by the way, spontaneously came to me and said, a little nervously, "My God, I thought there was no one else that takes care of  such a child at home. Finally I've met someone else who goes through the same thing I do."


  1. you are invited to follow my blog

  2. Sending you prayers from across the miles. Praying for rest for your tired bodies.

  3. I so hear you, the hospitals in England are absolutely disgusting, when Oatie was in hospital, I went in the adjacent shower room to wash my hands and well there was body fluids plus caked all around the shower, toilet, well everywhere eweeeewererwere. I don't know if you heard of the TV show called "Kim and Aggie" but they stormed a NHS hospital on TV and gave it a good clean and disinfect.

    In the Special Care Baby unit (SCBU) where the premmies could die from an infection, the cleaner broke protocol and used the same cleaning cloth around the whole unit!

    I so agree, about helping many at a mediocre level, but where's treating each person as an individual?

    Well, I have an infinite supply of hugs, so sending some more, and I hope you get some rest and I can't believe that you can write so wonderfully when you are so sleep deprived.