Atomictumor

7:24: the phone rings.  Its the hospital.

“Oh shit,” I said “She’s come out of it!”

Answered the phone

“Hi AT, this is Flora at the hospital, we forgot to get authorization for BJ to have a trans esophigial EKG today, they were wanting to do that.”

Dammit.  I gave the authorization.

Then I hung up and realized that my first thinking was that ‘She’s awake!’, rather than ‘She’s getting worse’ which is what the phone calls used to mean for me.

Thats a good sign

—

Man, it disappoints me that I’m out of good song lyrics for titles.  A week ago, music soothed the shock of all this, and while I’m listening to it now (Franz today), it doesn’t have the deep significance that it had a week or two ago.  Ob la di, ob la da.

Actually, that was voted the worst Beatles song, in some poll a few years or something ago, but it was always BJs and my song.  Its silly, sweet, and kinda irritating, and its perfect for us.

Anyway, to the business.  Listen up

—

Last night, something happened that pissed me right off.  G, my 10 year old, told me that a friend of his had read on the website that his Mom was going to lose her fingers.

I had not told G of this, and I was not intending to.  He found out, and I told him the situation, that her fingertips were not in good shape, and may have to be removed.  I don’t remember how I said it, but whatever I told him seemed to help, because Mom said she saw his body posture relax, and he and I talked and joked afterwards.

Listen, people, because here’s the deal.

I’m letting you come very deeply into my normally somewhat closed life, for reasons nobody will understand.  I’m sharing with friends, aqaintances, and strangers things that, under normal circumstances, nobody would be privy to.  I’m open, and I appreciate your reading, but there are some things I expect.

I expect to be the one to tell my children whats going on.  Yes, rumors will happen, but any information from this website that makes it to the ears of my children (and I closely monitor the computer use in this house, and know that they’re not seeing it here) will not be appreciated.

If you read this, I expect you to give me that space.  If not, there will be problems.  What I am doing here is not for them, and I, being their father, will be wholly in charge of what info they receive, when and how they receive it, and what info they won’t receive.

If that’s unacceptable, turn the damn browser off.  Get off my webpage, get out of my home.

However, I know that you all want to help, and ask that you please communicate discretion in this matter.

—

Ahh, the old man.  We had another meeting with the old man with the clipboard today, and he was just as inappropriately placed as ever.

And I was ready for him.

As we went back, me, Eaves, and BJ’s folks, he gave us the two badges rule.  I told him the nurses were allowing us to ‘cheat’, and suggested that we talk to the nurse.  He balked.  I said “hang on”, went back to the red phone that calls the desk, they rang me in when I told them who I was.

I went in, said a quick ‘hi’ to BJ, and asked BJ’s nurse, Flora, to come out to explain to Old Man Clipboard the situation.  He evidently didn’t want a part of it, because he was on down the hall, and Flora just let everybody in.

Score one for AT keeping the cool.

So, we went in to see her.  A friendly tech was setting up her brain scan, and we chatted.  BJ’s numbers were all good, pulse was in the 1teens, BP was looking pretty.  She was removed from the feeding tube in preparation for the surgery today, the trache, and the tissue work on her hand.

The Trans whatnot EKG didn’t work, because she has too many tubes.  They’ll try it again tomorrow, once the trache is placed.

Two more of BJ’s friends from Pellissippi State showed up, one of whom I had heard much about but had never met.  It was good to see them.

The brainscan started, and I got to watch it on the computer.  It was amazing.  Watching the brain, seeing the few instances of epilectic spikes (possibly caused by the dylantin).  There were parts of the brain in alpha waves, parts in deep delta waves.  She was asleep, but parts of her were more awake than others.

The tech told me that she wasn’t qualified to tell me, but that it looked better today than yesterday.  I breathed a sigh of relief, and continued to watch the electronic display of those wonderful, amazing worlds in BJ’s head, those worlds I’ve always wanted to play around in, displayed as spikes and valleys.

It was inspiring.

Eventually, OMWAC (old man with a clipboard) showed up to tell us it was time to leave.  I looked at him, said “In a bit”, and walked over to BJ’s head.  He continued standing there, I continued ignoring him.  I leaned over her, whispered to her, kissed her, watched her.  I considered those spikes and valleys, and how the beauty, and serenity in her face hides the frantic waves in her head.  Its the same face I’ve loved forever.

I watched her for a few minutes, and then stood up straight and bid her goodbye.  I smiled at the tech, thanked her for her patience explaining things and answering questions.  I then tured to the OMWAC.  I looked at his stance, and he looked back at me.  I still had the smile in my face, but I was putting a little flint in my eyes (the look that used to scare G).  I took off my badge he had given me earlier, walked up to him, handed it back.

He said “Thank you” sincerely.  I put my hand on his sholder, still smiling, and said, quietly but firmly “Remember where you are.”  I walked out, waved at the nurses, and thanked them.  They had seen the whole thing, and they smiled back at me, because I think he had been irritating them as well.
Mom said it didn’t make any sense, but I think he and I both understood it.  BJ’s dad says he must have been a PFC or something, and is looking for power wherever he can find it.

Whatever.  I’m prepared for him from her on out.  MMC, if anybody is reading this, I’d suggest checking in with the volunteer coordinators, because a lot of the medical staff don’t seem to be liking it.  When things slow down for me, I’ll talk to you about it myself.

—

Wow.  I started writing this stuff after dropping the kids off.  Now, its 2:36, Pigpen’s watching Cars, and I just ran off some older kids who were throwing sticks at G and his friends in my front yard.  Theres one nice thing about being me, I can sure as hell run kids off.

Maybe not OMWAC’s, but kids.

—

Went to the 1 o’clock show, and things are status quo.  The OMWAC wasn’t there, replaced by another volunteer who was happy to help us.  Thats good stuff.

No new news.  Dr. Mas stopped by and told me he wanted to talk to me as soon as he dealt with another patient, but he never came back.  I stuck around as long as I could, but had to take off to get G.  Haven’t heard back yet, but its OK.

Now I’m not sure when she’s going into surgery, or how long it’ll take.  I feel vaguely bad that things have come to the point that I don’t know when skin and meat that I’ve bitten and kissed thousands of times will be removed with a knife, but times have been weird.  BJ, I sure hope you understand why we’re doing this.  I know this will be a lifelong thing, what happens today.  It’ll be ugly, but I won’t care.  We’ll fix it as soon as we can, sweety.

I love you, my BJ.  I feel closer to you than ever.  You’re my angel, my sunshine, my beauty.  I’ll always be there for you.

Good luck.  I’ll see you when you get back.

This entry was posted on Wednesday, November 15th, 2006 at 2:44 pm and is filed under Pain, Love. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.