A Strange, Sleepless Kind of Existence

Where am I?  Day or night, I have a place to look to confirm my existence--that I am in room 4020, bed 2, at Seattle Children’s Hospital, in the Giraffe wing.  Yesterday was April 14th, 2012, and our current nurse is Kelli, a woman with a quick step, kind eyes, and a soft, reassuring voice.  The date hasn’t changed to the 15th because the room is dark and most everyone has gone to sleep.  It will be Sunday, April 15th when the sun shines in a few hours.  And only then.

Early Whiteboard

The dry-erase care board at the foot of my bed is my go to source of fast info.  It keeps me centered and “on task” during our hospital stays.  Each bedded patient has his or her own board which is littered with information, instructions, and things to do.  The boards are divided into fourths to compartmentalize the writing.  The top right is orientational stuff, things you would know or remember if you weren’t stuck in a sinkhole of hospital time:  Where am I? What is the date? Who is my nurse? Who is the doctor?  To what team do I belong? And what services am I receiving?  Most of this information doesn’t change, save the date and one other important bit: the nurse’s name.  Early on in our treatment, the information was sparse.  We drew pictures or posed silly questions to the "team."  Here is an example of a whiteboard from early in Lauren's treatment, before things got serious with surgeries and infections.  We asked the team two questions: 1) What is the difference between a simile and a metaphor?  2) What does "b" stand for in the equation: y = mx + b?  

Our board today isn't silly or sassy; it's a lifeline.  A thin gray smear reflects the number of names written and then erased with a quick finger during shift change. Day nurse, night nurse, day, night, day, night. We mark time with names and faces.  In room 4020 we’ve seen a variety of scrub-clad nursing professionals. I do my best to learn their names, ask them questions as needed, and thank them for the job they do.  Nurses are exceptional beings, each one a unique mix of skilled healthcare provider, caregiver, interpreter, counselor, A/V and tech operator, confidante, endurance performer, information and advice giver, and scribe.  It is most often the nurses who update the dry-erase board.  Without them and the posted care board, I would surely be lost.

Let’s continue a tour of the patient care board:.Top right is the plan of care.  In this section I can expect to find a list of things to be checked, poked, and prodded by different members of the healthcare ‘team.”  These items are often set apart in bullet points as cryptic medical jargon:

NPO 2300h              
Vitals every 4
CMS √ every 2
JP x 2
Ax Q4

In my time as cancer caregiver, I  make a point to learn the vocabulary, lingo, and abbreviations of medi-speak, as well as the social and cultural norms of this strange culture.  I observe nurses working together, make note of the differences between day and night nursing, and learn a bit about hospital hierarchy.

It’s immersion learning on my part.


Bottom left on the chart is reserved for family questions and concerns. Here we write questions we might have for the rounding group of docs, who arrive en masse at O’Dark thirty each morning.  When will chemo be finished?  When will you remove the stitches?  What time is checkout at your fine establishment?  I’d like to go!  The doctors usually read this part of the care board.  At least I have convinced myself they do.  Months ago in one of my piss and vinegar moods, I pondered animal group names: a pride of lions, a murder of crows, a pod of whales, etc.  I wondered, what name one might give to a group of doctors, given that taxonomically, human beings are mammals?  Doctors are simply another type of human being, despite a self-serving, pompous, and misguided belief in a more evolved doctors-only subspecies of homo sapien known to AMA card carriers as homo sapien medicalis big vocabularis.  As a service to science and Linnaean order, I decided the group name would be a drove of doctors.  Not only does this name tickle alliteration, but a “drove” is also the name for a group of asses. (I’ve mentioned my healthy skepticism and “Question Authority” stance for individuals in positions of power, including those in white coats?  Yes? Shocking, I know.)  Sometimes I use the family questions space to poke fun at rounding docs.   Once I wrote: “What is the square root of apple juice?  Calculate with and without the use of a straw.  Show your work.”  Today our portion of the care board has Lauren’s CPM goal and usage chart.  It provides a handy chart of on and off hours:

Goal: 90 degrees
12a-2am—ON
2am-4am—off
4am-6am—ON
6am-8am—off
8am-10am—ON
10am-12pm—off
(and so on, ad nauseam, for a 24-hours)

I use the questions space this way because I have too many questions to ask a group of residents and fellows.  I have written them down and will ask Dr. Chappie (L’s orthopedic surgeon) or Dr. Hawkins (L’s oncologist).  I might point out that getting Lauren into and out of the CPM machine takes about 10-15 minutes each time.  Needless to say, I’m a bit sleep deprived, more so than usual this week.  It is also my great pleasure to announce that Lauren met her 90 degree angle goal for the CPM today!  The machine works continuously, even when she sleeps.  I can't imagine it's comfortable.

The final quadrant, lower right, is labeled “You are ready for discharge to home when..”  This is a cruel segment of the chart because it lists things the patient must do or be able do before he/she can go home. No fever for 24 hours; eating and drinking by mouth or by G-Tube; pain is controlled without IV medications; and specifics to your child.  This last item on the list is the catch-all clause that states, in essence: You can go home when we say so, and only then.  Since I know that we won’t be going home any time soon--next Wednesday at the earliest--I use this area to chart what Lauren has had to drink.  The more she drinks during the day, the less she “drinks” via IV at night, and thus, the less she wakes me up to pee in the wee bitty hours of the night.  There is also a note to service providers that Lauren needs assistance when ambulating.  She needs her walker or the wheelchair we have borrowed from the hospital.  Insurance cancelled the rental wheelchair we were using, so now we have our own.  Out. of. pocket.

Lauren’s temperature has been an issue since we arrived on Wednesday.  She has spiked a fever each and every day we’ve been here.  HemOnc protocol calls for labs to be drawn for blood cultures.  So, somewhere deep in the bowels of this hospital are half a dozen petri dishes, each trying to grow something we hope Lauren doesn’t have.

At rounds this morning, the orthopedic team decided to have Lauren’s lungs x-rayed to see if something (other than her lungs) was there.  Following the adage, “No news is good news,”  I held to the belief that everything was fine.  Lauren’s chest x-ray was around 3pm today; the images were made available to doctors immediately, and we still hadn’t heard anything near bedtime.

I received a call, however, to say that the doctors wanted to talk to me about the x-rays.  Heart in throat.  My mind went into negative zone and I started to worry.  Hours later, a peppy young man advised that while they thought they “saw something,” (viral striping) the 2nd opinion was negative.  That said, how could I not worry?  Lauren has been doped up (Sleeping? Getting sicker?) all day.  She has cancer that could, potentially, spread elsewhere.  She has low energy and a bum leg.  She’s been on oxygen at night for three nights running.  Just those things are a lot to take in.  But the nurses helped me take in what I could.


The watching of nurses has become a bit of a hobby.  Delightful, spunky, thoughtful, friendly, and kind-hearted--those scrub-wearing angels.  I try not to stare outright, but I can’t help focusing on these interesting people.   In fact, if I had been Dr. Seuss at this hospital my book would have been titled One Nurse, Two Nurse, Old nurse, New nurse.  Really, how would hospitals run without these folks?  Seasoned pros breeze about the room with an efficient air, chatting or not as they check vitals, administer medications, empty commodes, fluff pillows, and adjust patients for care and comfort.  During the day, new student nurses shadow their mentors, eager to practice skills on live patients after years (sometimes mere semesters) of textbook paper patients.  These freshly scrubbed faces most often wear a mask of academic competency with a hint of nervousness just around the eyes.  They carry notes in their pockets, ask qualifying and procedural questions, and look toward their mentors for approval.  Their eyes inquire: Am I doing this correctly?

Newbies at Seattle Children’s Hospital wear crisp purple scrubs that identify them as University of Washington nursing students. Nurse kids from other schools wear blue or red scrubs.  These new nurses smile a lot and often look too much like teenagers for my taste.  It strikes me at odd times: When did I get so old?  When I’m looking at some of these young pups.  When I see yet another gray hair.  Even at the grocery store.  Picking up a prescription a few weeks ago, I noticed a sign at the register: YOU MUST BE 21 TO PURCHASE ALCOHOLIC BEVERAGES.  I’ve seen signs like this hundreds of times before as part of an expected checkout landscape, along with the register, cashier, and donation-to-some-kind-of-cause bucket.  But that day I took notice.  That day I did the math (on my iPhone calculator, of course!).  Did you know that kids born in 1991 can buy booze this year?  1991!  I still have blue jeans from the 90s.  And some of these same kids, dressed in their rainbow of nurse outfits, now care for my daughter.  How lucky am I?  In a word: very.