Bed Space 6, Part 1

Post-op in the Cardiac ICU (Pediatric)

Bed Space 6, Part 1

Post-op in the Cardiac ICU (Pediatric)

Susan Fusco-Fazio

When Laura was just out of open heart surgery, out of recovery, then sent to the Cardiac Intensive Care Unit (ICU), we knew what was expected of us while sitting in the ICU waiting room among the other poor souls who were also anxiously waiting to see their children.  We knew the drill well by now. Paul and I would take turns going to the desk to ask the secretary, the guard when we could go in to see our daughter.  Back and forth we paced from our seats to the desk, and back to our seats to wait longer. It was always the same routine, being turned away again and again, and hearing they are not ready for you yet. Go and sit down, and we will let you know when it is ok to go in. But it never happened that way. We knew from past experience to keep going up to the desk, to keep asking, to keep waiting for that moment when the secretary would finally say, okay, you can go in now.  

Once one of us was given the go-ahead from the secretary, the one who was at the desk and heard the news, would make a waving motion to the one who stayed behind to guard our seats as if they were gold. We always tried to sit in the seats closest to the desk and the ICU doors, with hopes of catching a glimpse of Laura’s surgeon or one of the cardiologists heading into the ICU. This would mean we were getting closer to seeing our daughter, seeing for ourselves that she was okay. Seeing is believing. We heard intermittent reports when Laura was in surgery and afterwards in recovery. In the ICU waiting room, there were no more detailed updates. The only thing the secretary could tell us when asked to call into the ICU for an update, was that Laura was in the ICU and being attended to. 

We sat on the edge of our chairs, not daring to make any coffee runs to the cafeteria, fearing the one who left to retrieve the needed fuel would be left behind when the time came to go into the ICU.  We sat frozen, rigid, and trembling with fear. Even though we had been through this before, it always felt like the first time. You don't get used to this, we insisted when anyone tried to infer we were used to being in the hospital by now. We had wanted to scream, you never get used to it!  We didn’t scream. We may have snapped, or maybe I just imagined one of us saying, do you get used to being punched in the face or burned by a stove? No, I don't think so.

Finally we were given clearance. Paul and I braced ourselves to go into the ICU to see Laura.

“Your daughter is in bed-space 6. Go through the double doors, then to the left, and look for the space marked with a 6. It’s not too far,” the secretary instructed us.

Walking though the double doors, I took note of the sign, Cardiac Intensive Care Unit, powerful words that cement reality. Putting one foot in front of the other, I forced my reluctant body to walk, feeling deep fear, while anticipating the horror of seeing our medicalized child in the ICU.  Sadly, this was familiar, but we were not used to it.  

While approaching bed space 6, I looked around and saw that the curtains were drawn at most of the other bed- spaces. In the distance, I spotted open curtains with nurses and patients in view. Either the child was alone with a nurse or a parent was present. I knew what an open curtain could signify; recovery underway or no procedures were being done at the time. This was what progress looked like in the ICU, but not necessarily privacy. If the curtains were drawn it could mean a patient was recently post- op, having a procedure, was having or just had an emergency medical event. Curtains were sometimes drawn for the patient and family’s privacy, or to protect parents who walked by from seeing atrocities. Make no mistake, seeing any child in the ICU was atrocious, but seeing your own child was devastating beyond what words are able to describe. 

Even though this was Laura’s 8th open heart surgery, we knew we would be shocked when we saw her.  Gathering all our strength we bucked up, and walked toward the closed curtain at bed space 6. We slipped through the opening in the blue curtain slowly, as not to rattle the metal loops. Once inside, we each stood at the end of the hospital bed feeling dread, the kind of dread that momentarily stops you from breathing. This feeling we came to experience too often during Laura’s life.  We had entered through the back of the curtain by the foot of the bed, which for us was the most tolerable first view, an introductory one, where we could hold off from looking too closely at our girl. 

       The nurse who was assigned to Laura for constant one-to-one care greeted us quietly, as Paul pulled the curtains closed to leave no gaps. We were both tucked into this small and intense space. The air was heavy and palpable. As I stood at the foot of the bed, I looked only at Laura’s feet, then forced my reluctant eyes to gaze upward over her fragile thin naked body dressed only in underpants. I continued my scan up toward the hard to look at uncovered surgical chest incision site that couldn’t help to stare us both forcefully in the face. That was tough enough to see, but not the worst of it. Seeing half of our daughter’s face covered with the taped down  breathing tube that protruded out of her tiny mouth, with the tape reaching around to the sides of her head, eyes puffy, swollen and closed, and her hair on the pillow in a haphazard dark brown nest. Seeing our daughter's face like this was the worst part. The nurse immediately started talking, probably to break up the starkness of what we were seeing, attempting to tame our thoughts and normalize a situation that was far from normal. She spoke in an upbeat kind of a voice. I imagined she was trained to do this. Informing us of Laura’s medical status, she began reciting many of the readings and numbers on the machines and monitors, walking us through the drill. She paused and said, “ Since you are both regulars here, I won’t explain what all the apparatus is. You know by now what everything is and what it’s for, so I will get right to it.” I suppose to the nurse, this was a positive benefit. We nodded in agreement that we knew what the stuff was, but we did not share her upbeat and relaxed attitude in any way even though we did have practice. Full of fear, and with an ache in my stomach, I hung onto every word she said to hear all the important information on Laura’s current status. 

My maternal instincts kicked in,“Can you please cover her up. She looks cold.” 

“Don’t worry, I am monitoring Laura’s temperature.”  To reassure us, she touched one of Laura’s feet, then looked up at us to report that she was warm and not to worry. 

“Her perfusion is good,” she said, reminding us of a reason for keeping Laura uncovered. 

Constant surveillance of Laura’s body was needed at every moment in the delicate first hours after open heart surgery; to monitor skin color, the chest incision site for bleeding and possible infection, to be able to constantly feel her hands and feet for pulses and blood perfusion, to make sure all IV lines and sites were functioning well, to extract blood samples to check blood gasses, white counts, electrolytes, and to make sure all the IV and drainage tube sites were taped securely. The breathing machine pumped loudly with repeated whoosh sounds while it breathed for Laura until she could breath on her own. A morphine drip was in constant flow to Laura, keeping her asleep and completely still. 

The nurse alternated her attention between careful observation of Laura’s body and all the graphs and numbered displays on the medical equipment. She was busy recording “Laura’s numbers”, the readings of her heart rate, heart rhythms, oxygen saturation levels and so much more. On the floor beside the bed, sat the plastic drainage canisters, the pleura-vacs each with a tube connected to Laura’s body. These were the tubes draining fluid from the pleural cavities behind her lungs. There was also a drainage tube that went into the surgical site itself and one in the pericardial cavity, the space around the heart. Laura’s breathing tube was connected to a respiration machine that made loud sounds in regular intervals as it did the work of breathing for Laura. We gazed at Laura and looked away, looked at her again and looked away. It was hard to see, hard to be there.

“Your cardiologist and surgeon will be here to speak with you soon. I don’t know when exactly. You can both stay here with Laura for a few more minutes. Then I will need you to go back into the waiting room. There are things I have to do that you can’t be in here for,” the nurse warned. 

We each kissed our unconscious daughter on the forehead, told her we loved her, muttered something to each other, asked the nurse more questions to clarify what we had heard, and maybe even said thank you. We looked down at Laura and looked up into each others eyes, indicating we knew what the other was thinking.

There is no way to describe what it feels like to see your child like that. There is only silence. What I can tell you, is that in your mind you don't really see your own daughter, because that cannot possibly be her. This is not the Laura we had seen hours before, but a severely medicalized version of Laura.  Like the other post-op images we saw of Laura in the ICU, we would eventually try to erase this one from our minds, until we were forced to see her like this again, after another open heart surgery. Strangely, each time it felt like the first time, because the horror of the present moment is always brand new, no matter how many times you've been there.  This is something you never get used to.

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