“You never know how strong you are
until being strong is your only choice.”
During our long stay in the hospital, many people commented that they didn’t understand how we were making it. How could we possibly hold it all together under the stress of the circumstances? It wasn’t something I acknowledged in the midst of our journey. In fact, I don’t think I fully comprehended how difficult things had been until weeks after Eisley had passed. Back then, I didn’t have time to pause or focus on me. My only choice was to be strong for my daughter, who needed me to be present with her for every moment I could. We just took one step at a time and one deep breath at a time, moment by moment, day by day.
Unless you have spent time on a critical care floor with a loved one, it is hard to convey the difficulty of the circumstances—the waiting, the fear, the dread, the confusion. I realize that everyone’s experience is different, but I think it might be valuable to others to share my personal thoughts and experience on our time there.
Here are some glimpses into a day on the floor in the PCICU:
- When I happened to leave Eisley’s room, I was attached to my cell phone at all times in case the PCICU called. If my phone rang and I recognized the number as the PCICU, my heart momentarily stopped; I feared the worst until I heard differently. The first night after Eisley passed, I turned off my phone for the first time, and it was the most freeing and yet disconcerting feeling.
- Shortly after shift change, the doctors, nurses, and nurse practitioners made rounds to get everyone up to speed with each patient. I tried to be present for these meetings to hear new information on Eisley and ask any questions in relation to her plan for the day. Understanding all of the information that was conveyed during these rounds was close to impossible, especially since my background isn’t a medical one. Sometimes what they said made sense and I began to understand what all of the little numbers and details meant, but more often than not it was an absolutely overwhelming blur of information.
- Life became a daily rollercoaster of emotions, as there was a constant stream of encouraging and discouraging news. Things changed quickly and could go from good to bad or bad to good at any given moment.
- Planning? What planning? For a Type A person like myself, the lack of a plan was a huge adjustment. There was absolutely no sense of schedule—rounds could happen anywhere between 9 am and 1 pm for morning shift and 9 pm to 1 am for evening shift. A surgery could be scheduled for a certain time, but they could get your daughter early or hours later. I was required to learn to live minute-by-minute, hour-by-hour, and day-by-day.
- Our room became a revolving door of doctors and specialists. I felt the need to advocate for my daughter and speak up for her since she couldn’t speak for herself, and her past was more complicated and unknown as compared to other patients.
- Children and parents going through similar struggles surrounded us on the PCICU floor, yet we were discouraged from communicating with them. This seemed a shame since who better to understand exactly what we were going through than these other parents?
- The noise was constant—the beeping of machines in the room, the alarms sounding down the hall as another child needed immediate medical attention, and the various announcements over the intercom. I got nervous when a “Code Yellow” was called during a snowstorm. The alarm was intended for the hospital staff, but it sounded quite intimidating if you didn’t understand it. Even the clock in the sleep room ticked incessantly until I removed the battery.
- There was an underlying feeling of helplessness because the things you most wanted to do for your child—touch and hold them—happened only occasionally because so many leads and lines and tubes tied them to machines. A loving connection was something you felt only you could give your child, and yet you couldn’t even provide that.
- As hard as it was, I had to let go of control and place trust in the hands of medical professionals to make the best decisions for my child’s health.
- I constantly met new caretakers as shifts would change. After being there for 75 days, we met more nurses and doctors then I can recall. I was thankful that faces began to become familiar to me and was elated when a nurse would be with Eisley for more than just a day. We were fortunate to have “primary” nurses and nurse practitioners who would be with us for almost every shift they worked. These people became my friends, counselors, confidants, medical advisors, and my daughter’s best caregiver and my family’s cheerleader. For the short time they spent with me, they impacted my life for eternity. For that I am forever grateful.
Life on the PCICU floor was undoubtedly the hardest thing I have ever done. At the same time, there were many truly beautiful moments—times of laughter, times of beauty, and times of love amid the heartache. While I would prefer not to relive many moments, I wouldn’t go back and change a minute of it. This journey has shaped me and stretched me in ways I didn’t think possible, and through it all I am thankful.