The alarm goes off and I’m reluctant to open my tired eyes. It’s 6am, my feet haven’t even hit the floor and already, I’m exhausted.
“Again? Is it morning again? Seriously?” Those are usually my first thoughts of the day.
I glance over at the bedside table at the video monitor whose black and white screen brightens my darkened room. I squint intently at the tiny screen listening and watching for any kind of movement from the mound of blankets that the camera points to. I’m also holding my breath, hoping all is still quiet. “Please. Please. Please. Just one cup of coffee.” I think. “I need just one cup before we start.”
All quiet. No movement. All good. For now. I slip quietly down the stairs and head to the kitchen where I make my first of many cups of coffee. I have about 45 minutes to sip coffee and enjoy the quiet before I start my day, getting my other two kids off to school first. It really is quiet, and I should be relaxing, but rather than do that, my brain is already going a million miles a minute with anticipation of the day. Who am I kidding? I never relax.
I think most of my exhaustion comes from my emotional exertion. The constant fear and worry that has plagued my brain for months now. Will today be better? Will it be worse? I never know how good or bad the day will be until I wake up the girl lying beneath the pile of blankets. When she opens her eyes, how she opens her eyes, how she moves, how she stretches, her facial grimaces, how much she shakes…these movements all have their very own file in my brain and each one of them gets logged in as they are performed. I then do a quick calculation to determine what will be possible for that day. How bad will she be?
As I uncover her, I do a quick physical assessment. As a trained nurse this is second nature. I’m looking at her coloring, her breathing, feeling her forehead for a temperature. How is her stomach? Does it look bigger this morning? How much is in her ileostomy pouch? What color is it? I lift her shirt to look at her gastrostomy tube. Is there drainage under the bandage that protects her skin from the plastic disc that sits atop it? I lift her shirt a little more to look at her chest and the dressing that covers her central IV line. Is it red? Is the dressing intact? Does it look the same as yesterday? All these things are done in less than a minute.
On days when she opens her eyes quickly, or is already awake, I know she’s probably feeling pretty good. Especially when she flashes me a smile when I say her name. ” Good morning, Oli!”
On days when she struggles to wake up and doesn’t want to move, when she grimaces instead of smiles, I know it’s going to be a tough one. These are the days that require the most emotional (and physical) exertion. These are the days when I can barely keep my tears at bay and the fear stays lodged tightly in my throat.
This morning it took me almost 30 minutes to get her up. My heart sinks with the realization of what that means. “Shit. I should have had two cups.”
I do everything that I can for her while she is still lying in bed, mentally checking off items as I complete them. I go cleanest task to dirtiest. The IV pump has just sounded three short beeps which indicates that her TPN infusion is complete. I cross the room to a long table that sits under her wall mounted TV. It is heaped with plastic bins containing hundreds of medical supplies. I chose one saline and one heparin flush that are wrapped in plastic, a Prevantics device swab, and a green cap from the top shelf. Reaching over the still sleeping form I grab the black bag containing the now empty bag of TPN and the pump. Lifting a flap, I turn the pump off and lift her shirt so I can disconnect the line from the IV. Once disconnected I start swabbing the hub of the IV with the disinfecting square and begin counting in my head.1…2…3…4…5. Then I let it dry…1…2…3…4…5. Next, I attach the saline flush and depress the plunger in quick stop and go motions. Then the process is repeated all over again before I attach the heparin flush. Finally, after the line has been sufficiently disinfected, flushed and heparin locked, I clamp the line and reach for the green cap that will cover the hub of the IV and will prevent bacteria from getting in. The IV is finished. Check. On to the next.
I slowly stand and straighten as pain runs down my spine after intently hunching over the bed. A quick glance at her face and lack of movement tells me that she’s going to need her medication before getting into the shower. If I can get her into the shower. Some days that’s a really big if. This will be one of them.
I walk into the kitchen over to a counter that used to be empty except for a Keurig machine. It is now home to a Keurig machine, a drying towel covered with syringes and 3 clear, plastic storage containers filled with numerous medications and the supplies to deliver them. So many meds and supplies. I have literally brought work home with me.
There are pills, tablets, liquids, syringes, syringe caps, connectors, pill crushers, small medicine cups, tubing, and sterile water. I quickly crush, mix, and pull up her morning meds. I glance at a printout taped to one of the top cupboards, confirming that I haven’t missed anything. Although, in all honesty, her med list changes so frequently I would have to print out a new list weekly to keep up. The big ones are on there, so it’s something to reference. I remember to add in the new ones, gather up all the supplies and walk back to her room.
On my way back to her room my phone buzzed silently in my pocket. A quick glance at my watch and I recognize the number instantly.
Hospital.
With butterflies in my stomach, I pulled out my phone. I have weird, juxtaposed feelings when seeing this number. On one hand I dread it. It could mean devastating test results or scheduling painful procedures. On the other hand, it could mean a new idea for treatment. Or a test result revealing some long-obscured answers that have eluded us for almost a year. It could be the answers to the questions that I’ve been asking for months and months.
What’s wrong with her?
Unfortunately, this morning, fate is not on our side. I answer the phone and hear a chipper, warm, female voice on the other line “Hi! Is this the parent of Oliana?”
“Yes.” I reply cautiously. This is not a doctor. This is office staff. This is someone calling to schedule something.
“Hi! I’m calling to schedule a procedure. Do you have a few minutes?”
Oh great. I mean…” Great! Yes! This is a good time to talk.” I say, putting her on speaker phone so I can pull up my calendar.
In the last 9 months we have repeated the same two procedures numerous times.
We’ve never gotten any new results. These procedures have never resulted in any answers. It’s the same thing over and over and over….
What’s the definition of insanity again?
But maybe this time will be different. That thought causes me to chuckle to myself as the voice on the other end of the phone rattles off a date and time. She goes through the pre procedure instructions, which I’ve heard a dozen times before. Oli is at the hospital about every other week for some kind of surgery or procedure. Before she gets to the “don’t let her have anything to eat or drink after midnight” part, I stop her.
“I’ll save you a little time. Oli doesn’t eat or drink or take anything at all by mouth.”
There’s a brief silence on the other end. I can hear her thoughts as though she has spoken them aloud.
Doesn’t eat or drink? Like, ever?
But what she says is “Ok. Don’t put anything in her Gtube…” I stop her again before she can go on.
“No. I mean she doesn’t have any kind of food or liquid going into her stomach by any route, ever.”
Another long silence.
I get it. It’s not possible to not eat or drink. Ever.
As the silence continues, I go on “She has an IV and gets all her nutrition through her IV. She is on TPN.” I never know how much to say or what language to use when giving the office staff information. Does she know what TPN is?
“IV nutrition.” I quickly followed up with that. Just in case.
“Oh okay. Okay. So, nothing by mouth?”
“Nope. Nothing by mouth.”
“Okay well I’ll skip that part then. To get to the procedure check-in you’re going to…”
“Park in the garage. Walk into the building take a right and walk all the way down, crossing into the hospital and check in at the desk on the right.” I finished for her. This isn’t our first rodeo.
“Right. Some people don’t know so I like to give very explicit directions.” I can hear just a hint of annoyance in her previously chipper voice.
Well lady, sorry. I have things to do and meds to give and we have done this dance every other week for at least the last 8 weeks. . I don’t have time for the repetitive dance steps on this particular morning. I have a sick girl in the other room that I need to get back to.
“I appreciate that. Thank you for your time.” I repeat the date and time again and she confirms ending the call with a curt “goodbye”.
So, how did we start this whirling, twirling never-ending dance at this god forsaken rodeo?
That’s a whole story. Let me take you back 17 years to Las Vegas, Nevada and a beautiful May afternoon in 2007.
I'm fine, but my mommy has issues! 