My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…
Archive for June 15th, 2008

Can you say, God Complex?

June 15th, 2008 | Category: Life

So, Friday I went to the hospital at 6 AM for a trache change. I have to get a fresh one every 6-8 weeks. I absolutely hate this process, any procedure involving my airway makes me nervous. Every time I get this done, something goes a little wrong, or more than a little wrong, so I decided to write a detailed set of instructions, kind of a “Michael Manual.” I put 10 copies of the following into 10 red folders…

Hi there,

So, you’ll be be part of a team taking care of me today.  I would definitely hate to die, it would ruin my day.  I don’t speak, but I’m quite smart and I understand everything but math.  I’m totally bad at math.  Please talk to me and ask me questions directly.

My underlying Medical Condition:

Spinal Muscular Atrophy.

I’m allergic to:


I’m currently taking:

Xopenex (1.25 ml, twice a day).

Cipro (twice a day).

Latex Allergy:


IV placement:

I have veins in my hands and arms, but I’m a very difficult stick.  I usually just get an EJ.

Communication without my computer:

For quick communication I use the following facial gestures (ask me to show you each gesture):

Eye brows up: Yes.

Eyes closed: No.

Crazy blinking: Help, something’s really wrong, I probably can’t breathe.

Fish face: I need a suction.

Left eye closed: I want to use the alphabet.

Use the facial gestures for quick communication, however, if I want to say something specific or if you have a specific question, we will use the alphabet.

Using the Alphabet:

Say each letter one at a time, A to Z.  When you reach the letter I want, I will raise my eyebrows.  In this way, we’ll spell words.  It helps to write down each letter.

My BiPap and Battery:

My BiPap connects to a battery with two clips like jumper-cables.  Red connects to red and black to black.  Black must always connect first and disconnect last, or a fuse will blow.  In the OR and in recovery, connect the BiPap to a wall-outlet and disconnect the clips.  If the clips aren’t disconnected, the battery continues to drain.

My piercings:

My eyebrow piercings do not come out, just cover them with tape.

In the Recovery Room:

When I wake up, I will definitely need suctioned, both my trache and mouth.  I might also need air in my trache cuff.  Please talk to me and make sure I’m okay.  When taking my blood-pressure, use a pediatric cuff on my leg.  I also get a dose of pain medicine, either Demerol or Morphine.  I take the small allotted dose ordered by a doctor.  My mom and Celeste Nelson are out in the waiting-room, please send for one of them as soon as possible.

They were neatly organized red folders and the plan was to give one to anyone caring for me. It’s the most prepared I’d ever been for the hospital. I covered just about everything, right? I had a solid plan, right? Apparently not. Apparently nobody really wants to read a little manual.

Things go bad in pre-op. The anesthesiologist, a Ralph Robertson, says to my mom and Celeste, but not to me, never to me, that he’ll be putting me under with gas. My mom explains that I don’t want gas, that I always get an EJ (IV in my neck). I spell out that I use Propofol, an IV anesthesia. My mom calmly explains that I’m not comfortable using a different anesthesia without at least researching it first. At which point Captain Knock-Out launches into, “Oh, I’ve just had 25 years of experience caring for patients, I’ve worked with little 9 gram babies, but I guess you know better.” I think, “Oh, God.” My mom says that she doesn’t doubt his experience and ability to care for patients, but that I still don’t feel comfortable using a gas, especially since I hadn’t been informed about it until 3 minutes before the procedure. He says condescendingly, “Oh, so he’s more comfortable with a needle in his neck than going to sleep with a nice gas? That is your idea of better care?” We all emphatically say yes. This continues until after a bit, he seemingly relents. I know he’s not sincere, but we’re on our way to the OR.

That walk from pre-op to the OR is always exceedingly long and astonishingly short at the same time. I’m always afraid, afraid I’ll go to sleep and not wake up, afraid I’ll never see Sara again. I always tell God I’m really not ready, that I have more to do. I always make myself promises, things I’ll do differently if I end up okay. I never keep all of them, but I make them just the same.

We get to the OR, the light is bright as day. Mr. Anesthesia whispers something to a nurse and I think to myself, “Oh man, he’s going to start some shit.” He tells me he’s just going to give me some oxygen and get my IV ready. This seems reasonable, until he disconnects me from my BiPap and connects me to a vent. A vent that isn’t set right at all. My breathing is very shallow and difficult. I frantically blink and try to signal to somebody, but nobody notices. Then I get very sleepy, I get that warm feeling in my face that I usually love so much. I’m being drugged, but not with an IV. There’s no needle in my neck. I think, “that fucker did it anyway.” I fall asleep frightened, not enjoying my drugs at all, not knowing if I’ll wake again.

I do wake up in recovery, but I can’t breathe. My eyes aren’t quite open, but I hear a fellow say, “no, I think you just turn it on.” They’re talking about my BiPap, apparently they have no idea how it works. Once they get that settled and I’m breathing properly, I get my shot of Morphine for pain. Usually, Morphine feels like Christmas, like the entire world is absolutely perfect. Morphine is like kissing Sara. Yet, that day in recovery, absolutely nothing is perfect. I can’t relax. I want to see someone familiar, my mom, Celeste, somebody. Nobody is called. I develop an irrational fear that my battery will go dead and nobody will notice. My thoughts race. Have the clips been on the entire time? How long have I been using the battery? What if this battery is the battery that died an hour early on the plane to Boston? Is my battery beeping? God, I wish mom and Celeste were here. Please let me go home. Please let me see Sara again.

When I finally get back to my mom and Celeste I tell them about the vent and the gas. We demand to speak to a supervisor and the anesthesiologist. Ralph tap dances and won’t give any straight answers. He won’t even look at me, let alone talk to me directly. He actually claims that he didn’t realize that we agreed on absolutely no gas and that he still gave me the IV first, I just didn’t notice. That’s right, he still put a needle in my neck. I immediately think of From Dusk Till’ Dawn when Pete shouts at Richie, “you fuckin’ liar!” He hooked me to that vent and I went down like a Times Square hooker. You don’t miss getting a fucking needle in the fucking neck. I’ve had it done several times and remember each time vividly.

That is my problem, I remember everything too vividly. I feel things too much. It’s why I can’t relax, can’t sleep.