The past 48 hours
Journal entry by Felicia Friesema —
Any expectations of eloquence from me should probably be shelved for a time. I think in the past two days I’ve been able to catch about eight hours of sleep, broken up into nap segments on chairs and finally on a couch in Steve’s room.
Oh yes. We finally were given the room. I almost wept when we walked in yesterday around 7pm. The previous 36 hours had been spent in either waiting rooms or the surgical recovery room, a.k.a. PACU.
The PACU is both a wonderful and horrible place. It’s the giant room where you go when finished with surgery. Nooks for patients are separated by nylon mesh curtains and form a perimeter around a central nursing station. There are constant whirs and beeps and gasps and moans and cries from patients as young as one to as old as 96. And there are nurses, one for every two or three patients, plus a few extra for support care, who are in constant motion, sitting only to type out reports or inventories.
It is a room full of suffering and comfort, noise and action, and because this is UCLA, student doctors and nurses learning how to provide smart and compassionate care. And it contains all the emotions you would expect to go with all of that.
The usual pattern is you only stay in the PACU for a few hours to make sure you come out of anesthesia ok. They check this through various assessments physical and mental, and then you get transported to your room for the duration of your stay.
Except when they have no beds. Which is apparently a perennial problem here. So we stayed in the PACU for over 24 hours.
When I could sleep, I slept in a chair next to Steve. Steve was able to catch naps here and there but the constant noise and motion of the room made that difficult. His exhaustion showed in his increased confusion and frustration. But that didn’t keep him from finding moments of levity. He would smile and roll his eyes at me when they were done with one of several assessments. He “danced” (something between a wiggle and The Twist) with Nurse Cecile to show off his motor coordination. And we worked on deciphering a few new phrases. My favorite was “forces of the Klondike bar” which through some word digging we discovered meant toilet paper.
The patterns behind Steve’s word usage actually do have some navigable paths to actual meaning. He uses whatever comes up in his brain first so he doesn’t lose the thought. The words are all somehow related to what he really wants to say either in syllable count, sound, first letter used, or related meaning. Context provides the rest. It takes a few minutes sometimes, but we usually crack the code. And when we do, the look on his face is relief mixed with what I will call his WTF eye roll.
This is hard. And it’s a constant reminder of the tumor’s presence. But it is also provides those sweet moments of simpatico between two halves of a whole. It’s a new, necessary language we are learning.
In the middle of the night following Steve’s biopsy, his doctor ordered an MRI and told us that Steve might be helped by a procedure called ETV, or Endoscopic Third Ventriculostomy. The tumor was causing fluid to build up in his brain. The ETV would relieve that pressure and possible abate some of his symptoms, possibly improving his language or memory for a time. The trick was we weren’t on the OR schedule and we would need to do this quickly. The doctor though maybe they would take him in by noon. So we waited.
Lesson one of PACU — always know who the charge nurse is and get her/him on your side. I learned this late in our PACU stay. But once I did, things moved a little differently. After noon became two and two became five, it seemed unlikely that Steve was going into the OR. Mei, the charge nurse, was informed of what was going on and I nearly begged her to intercede and find us a room.
By 7pm we were in our own room that had a couch for me to sleep on and a shower, a blessed, beautiful shower. Larry came to do a relief shift while I went to the cafeteria to get a meal and go to the car to grab our overnight bags. He texted me mid-meal to tell me they were going to operate tonight. And by 8pm they came to take Steve down to the OR.
Long story made short, the ETV was a success. Steve was back in our room by 1am and after some adjustments and new nurse introductions, we finally got more than a couple hours of sleep in a row. Steve is asserting himself more this morning, getting a little sassy about being told what to do. We probably have to stay one more night but I’m hoping we will be home by Sunday.
The picture is the view from our room, looking southeast towards Wilshire Blvd. as the sun rises.
To my parents, for loving our dogs and us during this whole ordeal, I have no adequate words to describe our gratitude. Steve does though: spine of cereal gasses. Which I think means he is looking forward to sharing a scotch with my dad.