My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

Jun 15

Can you say, God Complex?

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.


18 Comments so far

  1. Chike Coleman June 15th, 2008 4:25 am


    My name is Chike Coleman and I am 22 years old and live with a disability known as cerebral palsy. This disability has been a part of me my entire life, but something else that’s been a part of me as well is the rare blood disease I have called Chronic granulomatous disease or CGD. I won’t completely bore you with the details of the disease because you can look it up if you wish to. For the most part my rare blood disease is managable but my body is constantly fighting WWIII so that I can live another day as a college senior and intern. I am writing to you because 3 years ago I had a God’s Complex experience. Let me preface this story by saying that I have no idea what your life is like in hospitals I just saw the same idiot doctor parallels in my own experience. Three years ago I was in Carle Hospital for an infection that would die and then regrow. I had ignored the infection for quite some time as it was in a sensitive area and I didn’t fully understand what it was or why it was there. When I finally went to the doctor my pediatrician put me in the hospital pediatric unit and had me submitted as an inpatient. The first day I was there we told the doctor who would be overseeing my progress who I was and why I was here and what, if any medications, I was alergic to. Some of the medications listed were: amoxocilin,penicillin, keflex, and seclore. All of these were listed in a file as thick as a dictionary. The doctor started me on a bag of something and walked away. No more than five minutes had passed before I began itching and breaking out in hives and other assorted bumps all over my body. A nurse was called in and I explained the effect the bag of medication was having on me and then the bag was changed to a saline solution. The explanation the doctor ended up giving me was that he thought he’d try what worked on normal patients first before proceeding with some other form of treatment. I can relate to the God Complex problem. Any solutions on solving it? Let me know.

  2. MagnoliaFly June 15th, 2008 9:54 am

    Can you speak to a hospital administrator or something? Thats awful. Its like because they got the damn thing installed they don’t care that they could have killed you, and while they didn’t they did cause you discomfort.

  3. RW June 15th, 2008 10:09 am

    Definitely go up the chain with your complaint about this jerk. Even though they act like they’re god they are accountable if there are complaints to the administration.

    Everything this guy did will be documented so if he told you one thing and did another it’s his ass. Ask to review his surgical notes. I’ve seen MD’s fired for this sort of shit.

  4. arsenalgear June 15th, 2008 3:37 pm

    Egads! Glad you are okay dude. It is so hard to find responsible, trustworthy people anywhere.:(

  5. laura June 15th, 2008 5:54 pm

    dude. three words: mal prac tice.

  6. michael June 15th, 2008 5:55 pm

    Yeah, I’m definitely not done with that anesthesiologist.

  7. Irene June 15th, 2008 6:22 pm

    He knew exactly what he was doing. If he had another opinion about your anesthesia he should have conveyed it to YOU and your Mom in a much more professional, kinder way!!!

  8. michael June 15th, 2008 6:28 pm

    I couldn’t agree more.

  9. arsenalgear June 15th, 2008 6:31 pm

    The guy was probably too lazy and didn’t feel like fishing for a vein.:-(

    I am afraid that the quality of medical staff has plummeted. Last year I went to the hospital for some outpatient tests and it was like the island of misfit medical personnel, quite a change from the days when I was in all the time and each person was like a Special Operations officer…

  10. Miriam June 15th, 2008 6:47 pm

    Good lord, what an awful experience. Medical professionals who deal with airways should have to experience what it feels like to have no air. Absolutely nothing is scarier.

  11. michael June 15th, 2008 6:56 pm


  12. VoxLuna June 16th, 2008 2:23 am

    Mike, once again I totally relate to this. When I was in the hospital (remember my depressing email?), I had to deal with this shit all the time.

    When I was having an inguinal hernia repaired, the anesthesiologist was a serious prick. I asked if they had a BIS, which is a device to detect your level of consciousness. He goes, “Oh, that’s only for people who don’t know what they’re doing!” *Incorrect*, asshat. It warns if I’m experiencing surgical awareness! Well, then I’m getting the Propofol. Pushed in too fast and without lidocaine, so it burns like hell. Last thing I hear is his patronizing comment, “Tell us when you’re asleep.”

    Another God-Complex event happened in the MICU. I had had three chest tubes in at once; I was weaned down to one, but still very weak. This guy comes in and proceeds to take out the stitches and yank it out, and I ask, “Is this a good idea?” He smart-mouths me with, “I’m the head of thoracic surgery, I should know!” Well guess what — I went downhill again, because he took that tube out!

    I think some of these caregivers are crass and disconnected because that’s their emotional coping mechanism, but many are just plain douchebags who can’t fathom that you know so much about medicine.

    I hear you, buddy. I hear you loud and clear.

  13. Kara June 16th, 2008 11:05 am

    It’s disgusting how you were treated by the anesthesiologist. Twenty-five years of experience is all well and good, but he was in the room with with three people who did know better when it came to what worked best for you.

    I hope you get this all sorted out with the powers that be in the hospital.

  14. Colin June 18th, 2008 11:28 am

    Take him down to Chinatown, Mike! Seriously, your eloquent post needs to be read by the hospital administrators and lawyers.

    Maybe by the Digg crowd too?

  15. Joanna June 18th, 2008 5:19 pm

    Wow, keep fighting dude, the hospitals nowadays arent that great. I think you should write a book, I would add a chapter. Take care and keep fighting and being a survivor

  16. Lori June 19th, 2008 6:18 pm

    I’m so furious that this Ralph Robertson person is still working. That arrogant s.o.b!

  17. Karen June 22nd, 2008 7:01 pm

    Dear Mr. Phillips,
    I would have greatly appreciated the information you prepared for the team that cared for you during your last trach change. Did you know that you can request that a specific anesthesiologist be assigned your case for any procedure you might need in the future? Find out from your medical record who anesthetized you in the past in the way you prefer, and request that doctor by name. If any of your physicians directs his attention to your mother or other assistant instead of to you directly, simply refuse surgery. On the anesthesia consent, specify “i.v.induction.” I agree with Dr. Robertson’s opinion that, all things being equal, an inhalation induction is a good way to do your anesthesia. However, all things were not equal. You wanted a propofol induction, and anything other than that, unless you were persuaded to reconsider, was not aneshesia; it was assault. I’m an anesthesiologist. I would be very happy to help you navigate the “system” so that you are never again at the mercy of a jerk like Robertson. Email me any time.

  18. Tess March 4th, 2010 12:14 am

    I hate that doctor.