Saturday, July 25, 2009

Weekend at Cleveland Clinic Update 2: 07-25-09

I am a total pussy when it comes to being on duty by myself in this hospital room. My claustrophobia kind of gets to me a bit, the blood pressure is probably very high and the anxiety is...well, let's just say I am crunching Xanax like they are M&M's. I'll need to talk to my doc when I get back about why I burned through this month's supply so fast.

I don't know why I feel such abject terror having Bennett in my care by myself. I think I must feel like I am going to do something bad, or stupid. I isn't usually an issue at the house, but hell it is a HUGE problem for me in a hospital room. In fact, so much so I've actually never done it alone before. Tonight...this is my first time. It's only 3:15 PM and already I feel like the walls are closing in.

Jen is back at the hotel, resting, she will be back this evening for a little while but she will be returning to the hotel to sleep overnight, and I will be here with Bennett.

Rounds new info. The doc suggested that we wouldn't be discharged until Monday at the EARLIEST, because it is so hard for them to see any focalization in the EEG. This was a sub doctor, not anyone who really would have any info for us anyway since Dr. Lachhwani was not here today. But apparently some expert is supposed to review on Monday all the EEG data collected FRI-SAT-SUN with Dr. Lachhwani and make further determinations.

I just want to be sure it is Monday when we get out of here. We don't want to see this stretch on and on. We have work, another kid, and such. Not that we aren't prepared to do what we need to do, I just want to KNOW what we need to do. We need to be able to make preparations and junk.

Bottom line is hospitals suck, period. We want our answers and we also want to take Bennett out of here.

I will say this about Cleveland Clinic. Some friggin' BEAUTIFUL artwork in this place. I could, if time permitted, get lost in every hall looking at the great art they have selected on the walls. It's part museum in a way. Great stuff.

Anyway, some pics of the experience.


  1. Praying, praying, praying.

    Not trusting yourself is the old Ken, through this, Bennett is helping you find the new, real Ken. You are as capable, and as helpless as the rest of us when it comes to our kids.

    Thanks for the updates...EAT something.

  2. Those pictures! Poor Bennett. Hang in there, Ken. We're rooting for you guys.

  3. I am sorry it is so long but hopefully this means they'll have plenty of info to make good, informed recommendations......I know it sucks though.

    That last picture makes me want to cry. Bennett looks sad, and he is starting to look more grown-up. He is so beautiful. Now why was it the worst hook up ever? I wish they weren't so traumatic.

    Thinking of y'all. Keep updating too when you can.

  4. I can identify....Being a single parent, I get very scared alot when things go haywire...You'd think I was certifiable, the way I can act...or should I say REact....I think we are ALL this way to a point...Some of us hide it better than others...

    I know ONE thing...You are dealing with this alot better than you realize if you can post an update like this and have it turn out as beautifully as they always do! No way I could even put two thoughts together, much less put it into words!

    This will be over soon....

    We are all pulling for you guys...


  5. Glad to hear things are going this positive.

    Now you need to get yourself under control, believe me, I know the hardship of what I'm asking you, and you know I do. But sometimes when we really need to, we get super human strength. It's after that that comes the deep plunge, but then you can afford to crumble.

    Being with Bennett there is the same as in your home, but hospitals have that effect on everyone that doesn't work in them, we get a sense of greater responsibility, even when we're not the patient.

    Hope everything keeps going on course, and that you get out of there on Monday without the need to go back for further testing.

    You and Jen take care of each other, and both of you take care of Bennett. And all of "us" "here" will do our thing, be it play, send good vibes, energy, etc.

  6. Richard:
    Well, it has begun. Now 10:11 PM and I am flying solo. Scary.

    Yeah, he had a rough time with that lead attachment session.

    Why? She was the worst EEG tech ever. She was rough, slow as shit and didn't really work with him...she behaved as if it was a chore for her to listen to the children crying. Just bad at hr job, period.

    Thanks...will never wrap my head around how you have gone it alone for so long. Unreal.

    So far OK, though I have only been on my own for ten minutes. We'll see how it goes. Hopefully he will sleep well tonight.

  7. Gosh, he's too precious for words!! I know, such a "woman saying", but honestly, I just wanna squeeze him!! There's just something about seeing photos like that -their innocence just shines through, and I'm left with a lump in my throat.

    Hoping he's being disconnected today (Monday)...


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