So...I posted a condensed version of my week thus far on The Facebook, but thought I'd give a blog post a shot. I also want to post about my stepdaughter's visit, but that will be next.
The timeline of my medical events and adventures this week:
- Sunday: My husband and I returned my stepdaughter to her mother at the midway dropping off point in VA. I had been having pain behind my right eye for a few days and was trying to control it with vicodin and motrin and large doses of DENIAL. The frustrating part of this pain was that a) I "knew" what it was and b) it was happening in the OTHER eye. The "good" eye. Son-of-a!! (If you don't know the back story...I have struggled with what the medical community is calling an idiopathic (as in "we are too stupid to figure out was is causing it") optic neuritis (or inflammation of the nerve behind my eye). My journey with prednisone (the only thing that seems to keep it under control) is documented--> here.
- Monday: By Monday morning, the pain was so severe that I was walking around with my eyes closed and when my eyes were open I could only see out of my left eye. I had an appointment scheduled for Wednesday with my neuro-ophthalmologist and kept debating if I should tough it out or take immediate action. I debated ALL day and by 3pm was headed to the Hopkins ER (the only immediate way to get seen by neuro-ophthalmology before Wednesday morning). Thankfully, my doc had let the ER know that I was coming and expedited my way through the triage area. They even triaged me before the lady with chest pains and a puke bucket brought in by lifeline, which made me feel both terrible and like a rock star. Karma hit me back pretty hard later though.
- Monday night: Between triage and admittance into an actual room, we saw about 14 different doctors/nurses/hospital staff, all of who told us a slightly different story. The gist was that I would be moved temporarily to the ER "observation" area. I would have an MRI and once the Neurology department reviewed the MRI, they would have to "accept" me for admission where I would receive 5 days of IV steroids. (*Side note: I found several "dark and curlies" on my ER bed. Ewwwww.)
- Monday night continued: Karma sets in. From the ER, they took me to the MRI area. Unfortunately, the combination of severe pain/headache, no food, ER dark and curly sightings, and bumping along in a wheelchair caused some serious and ill-timed (pun intended) nausea. After approximately 3 seconds in the waiting area, I excused myself to hurl in the bathroom while the MRI tech waited. Next, they strapped me in with face mask and all and slid me into the MRI machine for one set of pictures. Three minutes later, they pulled me out to give me a shot of morphine. I asked to be untied and to sit up and then was handed a bucket and began puking with an audience of three. Sweet. Conversation included "Hmm...I have never seen vomit that color before." It was smurf blue. I aim to be unique. Needless to say...the MRI did not happen that night (its never a good idea to strap a vomiting patient flat on their back in a tight little tube.) I was moved to the "observation arena".
- In the observation arena, I was seen by a neurologist. I had to excuse myself to puke in the bathroom and while puking, he yelled his questions at me through the door. At one point he said "What happens when you take penicillin"? I coughed out "I throw up"! But he couldn't understand if I was saying I was throwing up or if I said that penicillin makes me throw up. Sigh. Then he proceeded with a full on neuro exam...including what appeared to be an attempted make-out session in which he looked so closely in my eyes that his cheeks touched my cheeks. I then grabbed a bucket and puked some more while the doctor and my husband watched. Fun. I had my first IV steroid infusion around 11pm. My IV leaked everywhere. Eww.
- I finally got admitted and moved to a room in the "penthouse" aka neurology ward at about 1am. I am pretty sure that I didn't get any sleep as my roommate was having a rough night. She had a brain tumor removed and was really struggling in a lot of ways. She rang the nurse bell approximately every 45 seconds and at one point advised the nurse she had been "incontinent" but then stated "I guess I had to do more than pass gas". LOL. Poor thing. They finally gave me some working anti-nausea meds and I was feeling much much better. The penthouse is nice.
- Tuesday: I got up bright and early at 5am....actually, I think this is when the "sharting" incident happened. And, let's face it. There is no resting after that. I patiently waited for 2 hours to call my mommy. Shortly after that, I had my MRI...which somehow had me gone for 3 hours from my room. Mind you...I missed dinner and now breakfast. Hello? Feed me! My Mom, Dad and Brother arrived around 11ish and we all ate lunch together in my room (I was advised that I couldn't leave the "ward"). Sigh.
- Later Tuesday: I was advised I would be having a spinal tap. In fetal position. In my bed. I was not happy about this. By this time, I have learned to always request ativan before any tests. I do not think ativan did anything to shake my fear. I requested a floroscope (where they use an xray to find the spot to "tap" rather that just pushing on your back and guessing). They said "protocol to first try a bedside puncture". I held my mommy's hand the whole time and probably squeezed all the blood out of it. I was in pain with just the local anesthetic needles. They were having a lot of trouble and at one point I had shooting pain down my hip and leg. I lost it. Scared the bejeebles out of me. There they are....telling me to hold still and I am trying to breathe and not cry. I was unsuccessful. Somehow as they were pulling the needle out, they got the right "spot". I then lay for a good 10 minutes while they sucked 20 ccs of spinal fluid out of my holed-filled back. After that, I had to stay flat on my back for 2 hours...just in time for the dinner plate delivery...come on!? Seriously!?
Wow, Vash. I had no idea this week has held so much torture! You need to clue me in on our texts! (weak smile). You are so amazing to keep this blog up and fill us all in! The doctors/nurses/techs just don't really get how invasive and painful all this is. I've never had an MRI, but Mason informs us frequently on how his (done over a year ago) was so uncomfortable... "it was cold and hard and I wanted a pillow!"... The boy can't remember what he did in Math that same day, but the discomfort of his MRIs stay with him forever! (Kind of like his memory of our forgetting to buckle him into his carseat at 4 yrs old... he still reminds us 7 years later...) Anyway, just proves to me how traumatic all these tests can be. I remember praying we could make the medical team understand that blindly trying to get the needle in the right place was not acceptable! I sure wish I could make it easier for you. We continue to pray and send positive thoughts. We love you, Vash.
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