Bed Space 6, Part 2- I Will Never Leave You

Post Op in the Pediatric Cardiac ICU

Bed-space 6, Part 2 -I will Never Leave You

Susan Fusco-Fazio

Only one parent had the option of staying overnight in the hospital when your child was in the Cardiac Intensive Care Unit. The parent room was located down a hallway close to the ICU waiting room, behind a coded locked door. When entering, we would pass rows of cots on either side of the hallway, some exposed and others draped behind curtains, strangely reminiscent to the actual ICU set up, barring the perks; private parent bathrooms and a kitchenette.  

It was crucial for me to be the one to take up nightly residence on one of those cots when Laura was in the ICU, even if it was only for a few hours each night. The idea of settling into a cot and actually sleeping, meant tearing myself away from sitting vigil at Laura’s bedside.  When I did attempt to get some sleep, I would awaken a few times in the middle of the night to go check on Laura, usually after I had the nagging feeling that my daughter needed me. Laura and I had a symbiotic relationship, creating a hyper-sensitive state leading me to feel her distress when I was asleep.  Sleeping in the parent quarters enabled the night nurse to find me if there was an emergency or if Laura was asking for me or God forbid, there was an emergency. Notes could be written in the chart stating a parent should be woken up. We had made a clear request to the medical team, to wake us up whenever Laura asked for a parent. This usually meant me. When Laura was in a dire situation she wanted her mother all of the time. Not possible in an ICU situation. Paul and I worked hard to at least provide Laura with this comfort, of knowing that at least one parent would be only a beckon call away even in the middle of the night. This was Laura’s seventh open heart surgery, and at 13 years old she was fully capable of knowing when she needed her parents. Laura had the right to ask her nurses to summon us day or night, when awake or asleep.

The ICU nurse stood behind the curtain that surrounded the cot I was sleeping on. I immediately heard my name being called. The nurse's voice broke the thin veil of my shallow hospital sleep state.  When I heard the nurse, I bolted from the cot and passed through the crease in the blue curtain to see what was going on.

“Laura is asking for you. She wrote this.” The nurse handed me a piece of paper with a few words Laura managed to scrawl out.

“Wheres my parents?   Get  my  mother”

 I took the note and saw how crooked the writing was, thinking how hard it must have been for Laura to form the letters with an IV attached to her hand, drowsy on morphine.  

“ Oh my God!  Laura’s awake now? Tell her I’m coming!”

It had been two days since Laura’s heart surgery. Up until now she had been unconscious ever since the surgery.  Laura was still anesthetized, asleep all day with no sign of waking. The surgeon, cardiologists and nurses had closely monitored  Laura’s vital signs and respirations as they waited for the anesthesia to wear off.  At the same time,  Paul and I had been praying for Laura to wake up and come out of the anesthesia unharmed mentally and physically, since she had been unconscious for so long, during the eight hour open heart surgery and afterwards for days in ICU. Laura was awake now, but still intubated with a breathing tube, unable to speak. There would be more continuous and vigilant monitoring to determine the right time to wean Laura off of the respirator, but only when it was deemed safe for her to breathe on her own. Laura would have to endure this protracted and very uncomfortable time period.

I went back inside the cot space and gazed down at Paul who was now awake. Though we only had permission for one of us to stay in the parent sleep space, Paul had squeezed in next to me on the twin cot in the wee hours of the night.  Due to Laura’s tenuous situation, we made the decision that it was necessary for both of us to stay in the hospital that night. I showed Paul the note, which prompted him to also jump out of bed. We sprang into action simultaneously. I quickly dressed, brushed my tangled long brown hair, and went down the hall to the nearest sink to splash water on my face in an attempt to wake my brain up. When I returned to the cot space, I could see that Paul was dressed, and had folded the hospital white linens into a neat pile, soon to be placed on two chairs in the ICU waiting room. The linens would hold two seats for us to return to throughout the day, since we would be alternating our time between Laura's bed space and the waiting room.  I would be the first one to go into the ICU to see  Laura. Paul would stay behind to take care of the bedding. Afterwards, he would go in to see Laura for a shorter amount of time, since he had the job of waiting in line to try and secure a cot for the coming night, to enable one of us to stay in the hospital with Laura. This was as crucial as going into the ICU to be with Laura. We had a plan. Mommy goes into the ICU to see Laura immediately. Daddy stays behind for the practical stuff. It was understood.

The nurse told me to go directly into the ICU when I was ready, without checking in at the desk since no one would be there this early.  My adrenaline surged as I sprint walked to the ICU. Getting to Laura as fast as I could was the only thing on my mind. 

As I approached bed space 6, I immediately made my presence known to Laura, “I’m here now!” 

I leaned in to kiss Laura gently on her forehead, the only place without an incision or medical device it seemed. The view of Laura was a bit more tolerable now that she was covered with a sheet and a blanket. Some of the visible and hard to look at signs of fixing a child’s heart surgically were hidden, except for one of the hardest to bear, the breathing tube still protruding from her mouth and taped to her face.  I looked into Laura’s eyes which seemed full of gratitude that I was with her.  I told Laura that I had been here all along, just down the hall. I moved in closer to say, I love you. Then I reiterated the words I said right before her surgery, the last time I saw Laura conscious and awake, I will never leave you. I will always be here. Laura knew this was true, but reassuring her continuously was paramount. Laura counted on this. Always, she needed to hear it, again and again like a mantra, whenever we were in the hospital.  

Laura was post-op miserable, but at least she was awake. The nurse filled me in on her medical status, indicating all was going as planned. I translated this by telling Laura she was doing well. Laura knew by now what doing well meant, even though doing well did not in any way coincide with feeling well.

Laura looked at me with urgency. Her eyes became wider. Still intubated with the breathing tube and unable to talk, Laura slowly lifted up her hand and pointed to the clipboard on the bedside tray table. Both the nurse and I knew what this meant. Laura wanted to “talk to me” which meant scrawling out a note. I held up the clipboard and carefully placed the pen into her left hand, her writing hand which had an IV attached to the wrist. She was laying flat, unable to move her body, weak and in pain. Laura lifted up her hand and wrote slowly with great effort. Single letters formed, then words and phrases began to emerge onto the paper. I looked on as she wrote, feeling her intense determination. I held my breath as I waited for this sacred communication from Laura.  Everything Laura did now was sacred, like gold: a simple look from her, a wave of the hand, a scrawled out phrase. These were signs of life, of Laura’s indomitable spirit, her presence here with us. Laura still Laura, still here, still alive.

Laura stopped writing and looked up at me. I gazed at Laura’s eyes, then at the note.  

“When Daddy come?   Time?   thirsty. “

“Daddy went to get me a cot. It’s 5:00 in the morning.” 

I quickly provided her with the answers.  Laura always wanted to know where the missing parent was when just one of us was with her.  She also asked for the time, several times a day when she was in the hospital. There were no clocks in the ICU. Suspended in a surreal reality, Laura craved to know the time, a link to normalcy.  Once we caught on to this, we would arrive automatically giving her the much needed information.  To address Laura’s thirst, I was saddened that I could not help her since her mouth was covered with tape holding the breathing tube in place. I held back my tears, and leaned down to gently kiss Laura.

“I love you Laura. Daddy loves you too.  He will be here soon. I am here. I will be here for a while. I am not going anywhere.”

Seeing that Laura was drowsy from the morphine, I told her to close her eyes and get some rest. 

“If you wake up and don’t see me, don’t worry.  I could be in the bathroom, getting food or making a call. But I will be right back.” 

This kind of reassurance was needed daily, hourly, sometimes moment to moment.  I will always be here.

Paul had the morning ritual of waiting in line in the ICU waiting room. Paul made sure he was at his post by 5:30 in the morning, to ensure that Laura would at least always have one of us nearby in the night. We will never leave you. We made that promise and we meant to keep it. Paul had that important job, sometimes waiting in line for hours. If he left the line to get coffee, or for any other reason, he would find himself back at the end of the line or worse, out of luck with no bed for the night.  If the line was short on a particular day, Paul would have the chance to go into the ICU to see Laura first before attending to this duty.  On those mornings, Laura would be comforted to see both parents gazing down at her first thing in the morning.  Soon after Laura saw her Dad, during those first unbearable days after surgery, intubated with the breathing tube and unable to speak, she would weakly lift up her hand and wave it towards him as if to say, Daddy, go get mommy a bed!  Laura knew the drill well. When she made this gesture, it also was another indication to us that Laura was okay mentally, fully aware, still herself, even if she could not yet speak to tell us what she wanted.  Later, after Paul successfully signed up for a cot space, he joined me at Laura’s bed space as we braced ourselves for another long and unpredictable day together, as a family in the Cardiac ICU.   

There were only 12 bed spaces allotted for parents. Each morning parents would line up as early as 5:00 AM along the waiting room wall adjacent to the desk as they waited for the secretary to arrive for work at 7:00 AM. More waiting followed, as she settled into her routine and finally signaled that sleep-space sign ups were about to begin. Most fathers and some mothers could be seen standing or sitting in that line looking as if they were waiting for food rations during war time. Make no mistake, this was war time. We felt like soldiers in trenches, living moment to moment, hoping to survive the battle we would face during acute hospitalization. The stakes were high as we fought to save our children's lives. Paul and I, along with the other parents, soldiered up to perform our honorable parental service, unaware that years later we would likely be stricken with post traumatic stress disorder (PTSD) for the atrocities we witnessed and endured, similar to actual war veterans.

The pain meds kicked in and Laura fell asleep. I snuck out of the ICU, to the elevator and down to the cafeteria to retrieve Paul and I some sustenance for the day; large coffees, bagels, cream cheese, and bananas.  I joined Paul on the floor in the parent line. Together, we drank coffee to stay awake. We ate without appetites to stay strong. We whispered to one another while lamenting over Laura’s situation. We gave each other pep talks. We pulled ourselves together while sleep deprived and in emotional turmoil. We knew what was required of us to get through the day. In survival mode, we took action. We geared up, dug deeper, and entered the battle, as loving parents and tactful advocates for Laura’s wellbeing.  As I finished my breakfast, the haunting images of just seeing Laura in the ICU flooded my mind; she was unable to move her body, talk, drink or eat, and in such discomfort. The big question came next, then the anxiety. Will the surgery work?  Filled with hope and fear, there was no time for tears.

When Paul and I were at the hospital, we were considered to be “parent patients.”  Parents of pediatric patients were part of the system, sharing a child’s care-taking while also needing staff  attention. Being a “parent patient” was the hardest work we had ever known. Waking up each day with little or no sleep, we stuffed down our worries and emotions, kept up with all the medical details, and hid all our fears from Laura as we tried to comfort and distract her. When we were  too exhausted to go on, we kept on operating anyway. Ready, go, repeat. Another day of Laura alive, was another day of hope, another day worth living, no matter how hard it was.  While facing those unpredictable and vulnerable days after surgery, we reminded ourselves, both within and out loud to one another, that our collective strength paled in comparison to Laura’s bravery and courage. What Laura had to endure was insurmountable. 

While sitting in the cot line with Paul, I felt a growing urgency to go back in the ICU to be with Laura. I gave Paul a quick hug and left him there to keep waiting. As I walked to the desk, the secretary recognized me and immediately called into the ICU to ask the nurse permission for me to re-enter. This was protocol. When I approached bed space 6, Laura was awake again. I apologized for not being there when she woke up. Laura was agitated. She pointed to the tray table with the pen and paper. I held up the clipboard so that she could write to me again. 

  “When tube coming out?    I want it out!” 

I read the note out loud, so that the nurse could also hear her question. Fighting back tears, I looked at the nurse and waited with Laura for the answer. 

“It will be out soon, but not yet. I’m sorry Laura. I know it's uncomfortable, but soon, I promise,” the nurse explained. 

Creating a distraction I lifted my hand up to grab the mechanical arm that held a small moveable television which extended from the wall behind the hospital bed. I turned the knob until I found some cartoons or a Disney movie, anything light that didn’t require concentration, hoping to keep Laura’s mind off of her plight as if this was at all possible. It’s all I could really do. 

For parents like us who lived in Massachusetts, driving home at night and being away from your child in the ICU was not an option. The Ronald McDonald house was only available to out of state families. The Children’s Hospital Inn was at least $100.00 a night back then. Several blocks away in Kenmore Square was the more reasonably priced Howard Johnson Motor Lodge. When Paul did not get a cot for himself, he stayed at nearby lodging. None of those sleep solutions felt ideal when your child just had open heart surgery. The only place both of us wanted to be, was right there beside our child in the hospital 24 hours a day.

We never understood why parents were pitted against one another to win a cot, all equally desperate to be in close proximity to their child.  If your son or daughter was in the Cardiac ICU, it meant that things were critical and your child was not out of the woods, vulnerable to whatever might happen. We were all in this together and hated competing for a bed. Why couldn’t they have more?  Paul and I sobered our anger as we thought back to earlier hospitalizations a decade ago when Laura was a baby, when parents were not allowed to stay overnight in the hospital at all. We took what we got, as did the other parents. No one complained. We were at the mercy of the medical system in every way, all of us hoping to bring a healthier child home.  Keep your eye on the ball. Stay grateful. Don’t make waves.

Sometimes we didn't get a cot. If the line was too long, we didn't get a cot. If a doctor wanted to meet with us early in the morning, Paul could not wait in line,  so we didn't get a cot. Sometimes I waited in the cot line, when Paul was still at the motel. If either of us slept too late and were not on top of our game, we didn't  get a cot.  The whole routine was repeated each morning. There were no reservations, no ordering days ahead, no trying to hoard and keep a cot for more than one night at a time. Those were the rules.  On the nights that we didn’t get a cot, I slept in the chair beside Laura’s bed. When kicked out and told to leave by a nurse who needed to tend to Laura, I slept in a chair in the waiting room with the other poor souls who didn’t get a cot and refused to leave their child alone in the hospital.                                                         

During this particular hospitalization I spent 24 days in a row sleeping in the Cardiac ICU; on cots, chairs  in the waiting room or at Laura’s bed side. I had made a promise to Laura and to myself that I would not leave her alone in the hospital, not even to swap nights with her father, as we customarily did when Laura was out of the ICU and in a regular patient room. On slow nights in the ICU, if we were lucky, we were both granted cots for the night. We would push the beds together, snuggle and comfort one another. Being together was a welcome break from the many harsh and vulnerable nights we each spent alone. Laying in each other's arms, we felt safer, as if holding onto each other was a buoy providing temporary safety, but no real rescue.  At least we were together, in the hospital, close to our daughter. For us this was ICU paradise. We tried not to think about the reasons why an extra cot was available that night. It might have meant that a child had improved and was transferred out of the ICU to a regular patient room. Sometimes there was another reason. We didn’t want to know the other reason. This might have meant the worst had happened, every parent's nightmare, reminding us that we were in a place where children get better and children die.