Monday, July 31, 2017

Life on the 12th Floor: Part I. (AKA: Alarms that Never. Stop. Beeping.)

It's a bit difficult to parse out the days, as they all blend together, but I remember that when I woke up early in the morning on July 8th, the day after my SDR, I was still feeling good. I had some more itching on my face and arms, which they controlled with Benadryl, but no nausea (once again, THANK YOU DR. ROBBINS!!!) and just a little soreness in my back. I couldn't really feel anything from the waist down...I could wiggle my toes (really, really well, in fact), but my legs felt numb and heavy, almost like they weren't entirely part of my body.

For brunch, I ordered Frosted Flakes, strawberry ice cream (because I can), and chicken tenders (retrospectively, this makes me feel ill....chicken tenders for brunch?! No no no no). I can't really remember much else about that day, but I think that's because I spent most of it sleeping.

EVIL ALARM...or maybe this is my epidural pump.
I'm not sure. But the evil alarm is in this photo somewhere.
Except when the machines started beeping or the nurses woke me to check my vitals. Both scenarios seemed to happen 1,583 times a day. One of my issues was that my breathing was shallow, and this triggered the respiration alarm
*c o n s t a n t l y.* I remember waking up and asking my mom if we could toss that monitor out the window and watch its descent from the twelfth floor, and she wholeheartedly agreed.

I begged my nurse to fix it or turn it off or ANYTHING. (Breathing is overrated) One of my first nurses was really good at pressing buttons on those monitors, but she refused to answer any of our questions. She kind of reminded me of a personified brick wall, because she was incredibly unhelpful when it came to fixing that respiration alarm, and when my mom asked her what she was putting through my IV, Personified Brick Wall stared at my mom in silence and left the room. Which...I dunno, doesn't that kind of sound like the substance of a horror movie? Evil nurse puts unknown chemical into your veins and upon questioning, stares through you and leaves the room. 

My next nurse was WAY better than PBW. She was amazing, in fact. She moved a lead on my chest so that the respiration monitor wouldn't freak out at me as much, and she was much faster to come into the room to turn it off when it did start sounding the alarm.

And then...circa 2 am Sunday morning, the pain hit. Hard. I think the general anesthesia was out of my system at this point, and my back knew it. At its worst, my pain had climbed to an 8 out of 10. My awesome nurse paged the pain management team and told the doctor that it was a "ten." ("I added a couple points so he'd move quickly," she confided conspiratorially.)

There was a giant digital clock on the wall that displayed the hours, minutes, and seconds as they passed. Those illuminated red numbers taunted me. I remember watching the seconds inch by and wondering when my pain would end. If it would end. 2:13:36. 2:13:37. 2:13:38.

As my pain increased, so did my nausea. When the pain doctor finally entered my room, I was bent over a pink basin.

He looked at the dosage of medication that I was receiving through my epidural and realized that it was too low, a child's dose, so he increased that. And then he pressed some buttons on the epidural pump and gave me a bolus of medicine.

"We watched your face relax instantly and we knew that it had worked," my mom said later. I pushed that basin away and fell asleep.

When I woke up later Sunday morning, my pain was about a 3! I must have slept most of that day, too, because I remember some other details, but they're all boring and related to sleeping (like: "UGH. The nurse is coming in to roll me again. Now I have to sleep on my left side, which is my least favorite side for sleeping!" Yeah. I told you they were boring details.)

The next (interesting) part of Sunday that I remember is waking up later in the evening and realizing that I'd missed my first visitors. I was really sad about that and kind of frustrated that my mom didn't wake me for them. :( I'd been in contact with another SDR family who was coming back for their daughter's one year follow-up appointment, and the little girl wasn't allowed on the floor (due to germ precautions), but her mom and grandma had come to see me and they dropped off a beautiful goodie basket...a stuffed elephant, a coloring book, some Better Cheddars (like Cheezits but...BETTER), heat packs, and a fuse-bead Ariel that the little girl had made me. Once again, we were floored by the kindness that found us in St. Louis.

"Don't worry," my mom had told me."We'll see them again." And we did. :) I'll share about that later, but Monday was such a crazy day that it deserves its own post, so I'm going to leave off here at Sunday night. Stay tuned for the rest of my hospital stay, which features less sleeping, lots and lots of tears (happy AND sad in the same day!), my first time out of bed to try out my "new legs," a room change, and a whole bunch of PT sessions!


  1. Okay so I just love how you write things. Even if its The Most Terrible situation, you write it in such an entertaining way! Not easy! I'm so sorry about this phase of your recovery but so glad it's over. You did great. <3 (And I can't wait to hear about Monday.)

    1. Aww thank you for the kind words, Tonia!! And thank you for being there for me throughout this whole means more than you know. ❤️

  2. Um what was up with Cranky Pants Nurse, though? Must not have been a good day! And what has been our mantra of July? RECOVERY SUCKS. (But the rewards are so worth it. You are so worth it. You can do this.)

  3. Hi K,
    Thanks so much for this update and for replying to my other comment. I didn't know they used epidurals for spine surgery but it makes perfect sense. I'm sorry the breathing monitor went nuts. That would have scared the living daylights out of me. Someone told me people with CP can sometimes have shallow breathing in everyday life. I do not know if that is true or if the person was referring to people with speech impairment only. My general experiences with nurses was awful but I can tell you those pain killers really work! I still wonder if the pain killers are part of what made me dizzy, I might have also hallucinated from pain killers(I saw pink and black things floating) but I was 5 so I wasn't really sure if I was dreaming or awake LOL. Anyway I'll be around a lot more now if you need anything, and will try to stay in touch more.

  4. Crazy how different nurses can be, eh? It sure makes me all the more grateful for the amazing ones!! Glad you had such a fantastic one following the less-than-warm demeanor of the other.


Please feel free to leave a comment. I would love to hear from you. Thanks! :-)