Chapter six of the BOH manuscript: “Mommy, the Patient”
Rachel’s second stroke cast a shadow, creating the darkest hour for me. Worse than losing my father. When Dad died, I had Rachel as a diversion, and a wonderful one at that. Now, that very spirit who lifted me is in this precarious position. Her condition and recovery were so uncertain, it had doctors baffled. They didn’t know what to predict.
(They still don’t.)
As a team of doctors, nurses, and parents, we all concluded that Rachel’s age – 4 years-old – almost guaranteed that her brain was “rewireable.” We just didn’t know to what degree and how long that would take.
Rachel’s illness was under the umbrella of HUS, which stands for Hemolytic Uremic Sydrome. In the beginning of this journey, HUS was our enemy; now that very diagnosis was our friend. We also believed that we were early in the healing process. Which brings us back to the previous point: things were so uncertain. We couldn’t predict how Rachel’s progress would go.
At some point, doctors cited a two-month window in which we were going to measure her gains. Small changes filled her early days, post stroke, as the brain injury “evolved.” She was able to breathe on her own. For brief moments, she was able to focus on people she knew. She briefly recognized Elmo on TV. She liked watching “Charlie Brown Christmas” on her little DVD player. Mom brought flash cards with words and color on them. She was engaged to some degree. I saw her lift her leg and wiggle toes too.
Even with these glimmers of hope, what does a parent of a sick child do when they feel such stress, they cannot sleep? Many might drink, do drugs, or walk the streets at night, hoping the exercise induces sleep. What did I do? I checked in as a patient at United Hospital, hoping they’d give me pill.
At the beginning of our stay at Children’s, Jim and I took turns staying in the room with Rachel, while the other went to our room to sleep. After a while, we didn’t need to be with her, as she slept soundly through the night, thanks to drugs and the hard work of healing.
Sleep is a restorative measure that helps us face another day. But if you’re a parent with a kid in PICU, forget sleep. It eludes you like a mirage of water on a hot day. I know I felt tired, but one night, I could NOT fall asleep.
I tossed and turned in my little, single bed. I counted stars as I looked out my window. I tried to visualize something positive. In fact, Jim told me days earlier that he had a dream that he heard a girl’s voice say, “Daddy, I’m hungry.” Of course, he assumed that voice belonged to Rachel.
“Jim…Jim?” I asked, feeling shitty about waking him up.
“What? What is it?” he asked, flipping over to face me.
“I can’t sleep. Can I come over there and snuggle?” I swear sex was not on my mind. I craved his arms around me, though. I wanted a feeling of strength, and I knew his arms around me could produce peace and eventual sleep.
“Sure…sure.”
He lifted the covers, allowing me in. And on cue, he draped his arm around my thinning body, gently squeezing me. And I really, really wanted to feel secure, then sleepy, as he held me.
Thirty minutes pass. My eyelids don’t droop; they flick wide open. My heart ticks fiercely.
“Jim? Do you think that the nurses can give me a sleeping pill?”
“No, Melissa. They can’t.”
“Why not?”
“You’re not a patient! Only patients get meds, not parents.”
“I..I just can’t sleep. What do I DO?”
“I don’t know, but what I do know is that the nurses won’t give you anything.”
By now, I’m up, looking for my robe and slippers in the dark. I just gotta find a solution to this sleep thing. And when I get this way, I don’t care how stupid I look or how stupid I act to find the answer.
“I’m going to try with the nurses. Maybe I can sweet-talk them into giving me something.
“Ohhhkaaayyy,” responded Jim, with severe doubts. “See you in a few minutes.”
I open the door, leaving both my husband and my cell phone behind. Mistakes, to be sure, but I wasn’t clearly thinking in the least. I strode out of the room, and the light pierced my pupils, causing me to squint. I walk fast even as my eyes adjust. I hit the PICU unit and find my first nurse, Gina.
“Hi Melissa. What can I do for you?” She eyes me in my LL Bean slippers and monk-like robe. I must have looked like I was going to midnight mass as the hood draped around my shoulders, my hands shoved in the front pocket. But Gina doesn’t comment on how I look…
“I can’t sleep. Too stressed. Can you give me something? Anything?”
“Well Melissa, I can only imagine how you feel. But, no, I can’t give you anything…”
I hate it when Jim’s right. Why does have to be right so often?
“But…United Hospital has these vending machines that dispense meds. Perhaps they might have an over the counter thing that could help you?”
“Great, Gina, that’s great. Now the next thing you can help with is directing me to those vending machines.”
“Oh sure. It’s really easy. You just go down the hall…”
At at this point in listening to Gina, I confess that I’m hearing this: “and then blah blah blah, and then take a right at the blah, blah, blah, and then take the elevator to the blah blah floor, and then take ten steps to your blah…”
“You can’t miss it!” she said, finishing her directions. She seemed so confident in me. Me in my monk robe, hair all astray, LL Bean slippers, and no cell phone.
“Thanks Gina. Wish me luck!”
I go in the blah blah direction, taking the elevator, and begin wandering, not looking for machines. Suddenly, I want something else. And I’m not even quite sure of what, but walking aimlessly felt oddly better than being in that damn sleeping room, in a single bed, not snoring.
I turn this corner, then that one, and then lo and behold, I magically wind up checking into United Hospital, which is attached to Children’s Hospital.
The nurse on duty directs me to my own patient room. She points to the bed, and I climb in it. She takes my blood pressure, takes all my personal information, and asks for me to wait for the next nurse in line before a doctor sees me. And when she closes the door when she leaves, I’m alone, in a room, by myself, in a bed of my own. And this time, I’m the patient.
The relief of someone taking care of ME makes me swoon. I am over the moon with joy. Sleeping meds were what I sought, but being the patient was what I was really after. As I swam in this glorious feeling of freedom, the second nurse swerved the door open, bringing me to the surface.
“Hi there. Are you Melissa?”
“Yes. Yes I am!” I sounded like I was at a party. “What’s your name?”
“I’m Cindy, and I work with Dr. Carolyn Smith, the ER doc for the night. Let me see here,” she said, looking at her notes. “You have a daughter in Children’s PICU, and you’ve come here, looking for a sleep med. Is that right?”
I realize suddenly that I’m not at some cocktail party, and that she is bringing me back to a sober reality. “That’s right. My daughter has experience brain injury, so I guess that’s stressing me out, making it hard to sleep. Can you help me?”
“Well I can’t help you. I’m just a nurse doing some preliminary things for Dr. Smith. I need to ask you a few more questions. OK? Do you have any health issues that we should know about?”
“Well, I’m a diabetic. Type II that is.”
“Do you take meds for that?”
“I am on metformin. Honestly, I haven’t been all that good about taking my meds since checking in to Children’s. Too stressed out.”
“Have you been checking your blood?”
“No.”
“Now, this next question is something I have to ask, so don’t freak out. Do you feel like harming yourself? Do you feel…suicidal?”
I held up my hand in protest at the “s” word. “Oh no…no…no. I can’t imagine me ever doing that. Suicide, that is. Did you ever watch the show M*A*S*H? Or are you too young for that?”
“I think I did catch that show in re-runs. Why?”
“Hawkeye, one of the doctors on the show, compared suicide to ‘leaving a movie in the middle, never finding out how it ends.’ He’s right. I’m not going anywhere. I just cannot sleep. Look, can’t I have a sleep med and get out of your way?”
“Once again, that’s up to Dr. Carolyn. I think I have all my questions answered though, so let me get out of YOUR way and have her see you.”
“OK-dokey,” I said, watching her scribble the last of her notes and leave.
I sat in the room, breathing in the silence and freedom. I reached for the remote control, and just as I was just about to flick on the television in order to watch what I wanted to watch…Dr. Carolyn walked in.
“Is this Melissa?”
“Hi! You must be Dr. Carolyn?”
“Yes! Yes, I am.” She nodded and offered her hand for a firm shake. I was smitten with her for being a female doc, but I was also taken by her gorgeous blond, dreadlocks. She reminded me of Anne LaMott, a favorite writer of mine.
“Look, let’s cut to the chase, Dr. Carolyn. I just need a simple sleep med, as I can’t sleep. I’m stressed out. My daughter is very sick, and I just can’t sleep.”
“What happened to your kid?”
“She contracted E.Coli and experienced…brain injury as a result. Both sides of the brain, in fact.” I still couldn’t say stroke.
“I can see why you’re stressed, for sure. How old is she?”
“Four and a half.”
“Well, she’s got youth on her side. And in my line of business, I’ve seen some miracles.”
“Really?” I’m sitting straight up in the hospital bed, hoping she’ll provide an example.
“Oh yeah. I saw one guy, totally messed up. He looked like this.” She demonstrated a contorted look on her face along with arms and legs going in all the wrong directions. “He couldn’t walk, for sure. Talking wasn’t happening either. But then, years later, he walked…walked right up to me to thank me.”
“He walked?”
“Yep. He did. So it stinks that this has happened, but she will likely come around. We just can’t tell you when. Now, you need to take care of yourself, and yes, sleep is important. I will write out a prescription for Trazadone. It’s great because it’s not addicting like some sleep meds are. And it aids you to getting sleep, but it doesn’t knock you out. You can take this down to the pharmacy down the hall and have it filled…”
And then, as she handed me the golden ticket to slumber, the door flung open, and Jim flew in, flanked by two security guards. As I take my last breath in life, I shall never forget the look on his face: he was worried sick about me. He had the security guards looking all over the place for me. As he told me later, he went to top of the parking ramp and looked down, thinking I had jumped.
I confess I sometimes doubted Jim’s love for me. I’m kind of odd and strange. I ask too many questions. I can be public nuisance when I summon the Barbara Walters in me. But when I saw that look on his face, I never doubted his love for me again. Ever.
Jim embraced me, and then, finally I felt the strength I was seeking earlier that night. He told me he’d been looking all over for me. He then scolded me for not taking my phone. I promised him I’d never leave without it.
I looked at Jim and asked him, “So, Rachel’s sickness….what level of hell is this?”
“Honestly, I don’t think there’s a name for it.”
We thanked the doctor for her time, and then we collected my med down the blah, blah, blah hallway. And I took his hand as we headed back to our 50’s sleeping room. He brought me a glass of water. I downed the med, climbed into bed, and counted my lucky stars as I drifted off to sleep.