Thursday, May 7, 2009


Today was the day that we went over to UCLA and checked Sophie in for the video telemetry that will determine whether ESES has reoccurred or whether we're just dealing with the usual mess.

I wanted to do a long, clever post and this morning, I took a lot of notes. But the fire within me is burnt out and all I've got is this:

I.M. Pei, the famous architect designed the brand-spanking new "Best of the West" medical building and if hospitals were churches this would be the GRANDADDY cathedral of them all. Absolutely incredible.

There's only one problem:

There aren't enough beds and we waited over seven hours for one to open up. (We were told over and over that when the hospital was designed it was over ten years ago and they just didn't plan for the growth -- wtf?)

Seven hours with Sophie in a stroller. After five of those hours, the EEG tech hooked her up with just the electrodes so we went back down to the lobby afterward to wait a few more.

One I.M.Pei Building

One Harp Player in the Lobby

A Meditation Room

A Peace Garden

Seven Hours Waiting

Four Giant Seizures in a Stroller

I had the thought that I was in an alternate "Dr. Strangelove" movie -- one where all the fancy donors and doctors and political figures sat around a table planning the place and FORGOT to make enough beds.

When we were finally settled in our room, our fabulous nurse, James, stood patiently listening to my rant and nodded his head.

"It's THE BEST IN THE WEST" he said, his voice dripping with irony and tact, repeating a poster slogan that is displayed all throughout the hospital.



  1. There is no actual hell...only hospitals.

  2. that is ABSOLUTELY ridicules.. I'm so sorry :( The LEAST they could have done was call you and say "hey we are really behind and don't think we can actually do anything with you until such a such a time ..." so you didn't have to wait like that. Completely stupid...

  3. We have something we call "hospital time" because the times/space continuum does not seem to apply in hospitals where people are in distress and need assistance sooner rather than later.

    Hope you received good infor from the tests.

  4. I agree with Claire. You poor dears. Unbelievable. That kind of crap should be illegal

    hang in there!

  5. thank God that is over. Can I bring you anything? Coffee? Vodka???

  6. God Almighty! I don't know how you do this without drinking...a lot.

  7. Yes, it's completely possible that they "forgot" the patients and their families, if they haven't ever BEEN on that side of the table. I'd SO LOVE to be employed in making changes in this field; it makes me burn with energy! Oh my gosh, I LOVE that you write it all here, and the way you write it. The truth needs to be told, dagnabbit!
    It's a relief that it's not what you feared, but it sucks that they don't know what it is. I am sorry. (How lame that sounds, but I mean it.)



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