January, 2002 | Jan Harley
January, and Nicole’s surgery date, soon arrived. I met Nicole and her Dad in the surgery holding area at Methodist Hospital. Many patients were lined up in assembly line fashion waiting for their upcoming surgeries. Nicole was one of the first patients scheduled. She had an edge of fear in her eyes. Her Dad and I tried as best as we could to comfort her and assure her that she was going to be just fine. One of Nicole’s neighborhood friend’s Mother was the assisting surgical nurse. Kay demonstrated such love and compassion to all of us. It was reassuring to know that Nicole would have a familiar and “Motherly” face in surgery before she was put under.
Dressed like a painter from head to toe in a white scrub uniform, I slowly bent down to Nicole’s face and told her I loved her so dearly and was so proud of her bravery. I tried to comfort her by telling her I would see her as soon as she came out of surgery and would be by her side. Nicole looked up at me and exclaimed, “Mom, I don’t want to lose my leg”. The tears began to stream down our faces like tiny raindrops falling from above. I gently reminded her it was the only way she would beat this cancer and live a good life. Her face began to soften and she closed her eyes. It was time. Nicole’s Dad would accompany her to the surgery room.
It seemed like an eternity as we all sat in the surgical waiting lounge. The minutes ticked by in slow motion on the wall. My sweet Al had flown in and taken off work to be by our sides. Al and I were waiting alongside Nicole’s Dad, his wife and Nicole’s God-Father, Barry. The strain of the on-going surgery was upon all of us.
I felt as though I were hooked up to some sort of control setting much like the cruise control of a car. I couldn’t allow my cruise control to be turned off. It housed my pain and sorrow. If I turned the cruise control off, I may collapse into a river of tears and be swept away. I wanted to be calm and brave for Nicole when she was transferred to St. Mary’s hospital for recovery after surgery.
A nurse soon appeared and said Nicole’s surgery had gone beautifully. Beautifully? The word beautifully resounded like sweet trumpeting horns of a village celebration. The nurse reported that the surgeon was very pleased with the results and all the technical issues the surgeon encountered in this particular amputation had gone as planned. The news was a huge relief.
The nagging reality of a missing leg and how in the world was I going to face this reality encircled me. I hadn’t known any amputees. I had no idea what they dealt with. My only choice at this point was to free fall and go through the experience. I said a lot of fervent prayers for healing, safety, peace, hope, love; all the criterion I could think of to calm myself and lift my energy and spirits.
The nurses informed me I could accompany Nicole in the ambulance to her recovery room. I quickly kissed Al good-bye and told him where to meet us. I ran down the hall and took the nearest elevator to the ambulance waiting area. Soon I could see Nicole down the hall being escorted by the two ambulance attendants. I felt a sharp pain course through my heart. There she was, sedated but with eyes wide open. She said, “Hi Mom”. I replied, “Hi sweetheart, how are you feeling?” Nicole said she was groggy and asked if I was going to ride with her in the ambulance. I put on my game face and set my cruise control to on. I replied, “You bet sweet girl, let’s ride together”. Nicole was completely covered with hospital blankets and I could see the outline of a huge cast on her left leg. I was still trying hard to process in my mind her leg was missing, but the reality of the amputation was still out of reach.
The ride to St. Mary’s hospital was bumpy and uncomfortable. I realized I felt every bump and crack in the road. My body was surging with adrenaline and the fight or flight response was in full engagement. I walked alongside Nicole and held her hand as the nurses led her surgical gurney down the hall of the children’s cancer-wing and into her awaiting recovery room. The room was big and airy with a large window looking out onto a beautiful and lush central garden surrounded by the towering hospital walls. The bed was equipped with all kinds of metal gadgets; including a metal canopy with a triangular handle used for lifting oneself up. There were five nurses all bustling around Nicole. Soon the blankets were pulled off Nicole and in synchronistic precision the nurses lifted Nicole off the gurney and onto the bed.
In slow motion I watched as they lifted my sweet 10-year-old daughter onto her bed and unveiled Nicole’s amputated leg. There she lay on her hospital bed with a huge cast wrapped around her amputated leg. As the amputation was below the knee, it was very obvious her leg was shorter than the other and that her left foot was obviously not resting next to her right foot. Reality hit and it hit hard. “Oh my God her leg is gone,” I whispered to myself. I felt an energy and sudden surge of grief rumbling through my body like a dam that had abruptly broken. A mighty river of sorrow was now rushing down the mountain and crushing everything in its path. I was totally taken back as my response was so powerful I had absolutely no control over my body.
I ran out into the hall and sat down on a bench and began to sob and shake with uncontrollable grief. A nurse came by and put her arms around me and squeezed me tight, then asked if I needed anything. I looked up in some sort of haze and whispered, “Thank you”.
After what seemed a long time I mustered up enough courage to return to the room. I now felt drained and suddenly zapped of energy. The room was a sea of medical professionals. There were nurses checking on her, the pain management physician, the surgical team, Al, Nicole’s Dad, Barry and me. As we all stood around Nicole’s bed, it was announced there was a drain-line catheter left behind in her cast, somewhere at the site of the amputation. Apparently upon closure of the wound and subsequent application of the hard cast, the catheter had accidentally been left behind.
The Prosthetist was soon on the scene. He assisted the surgical team during surgery with the placement of the cast on the leg. With an electric hand-held power saw, he began cutting into Nicole’s hard cast to make a window so he could pull out the missing catheter, which if left behind could cause an infection. The loud buzzing of his saw amped up the level of stress and anxiety in the room and continued on for sometime.
Nicole was now in obvious pain and her sweet angelic face was twisted up into an unrecognizable contortion. Oh my baby, I thought to myself, how can I take this pain away from her?
Nicole suddenly began screaming at the top of her lungs. “Please, don’t. It hurts! No! Don’t do that, it hurts!” Over and over her pleas continued. The screaming did not stop nor subside but only got louder and more desperate. Nicole’s Dad and Barry left the room. I asked the pain physician if there was anything they could do and he reassured me she is doing fine and will settle down soon. He suggested I leave the room for a while. I thought, “Would a lioness leave her injured cub? I don’t think so!”
The screaming continued on and on. I finally stepped in and shouted, “Everyone in this room needs to stop what they were doing right now and check on Nicole’s pain. There is something wrong!” It was again explained to me about Nicole’s pain medication and something about parents being more sensitive to the pain of their children. The dam had broken. I completely and thoroughly lost it shouting with all my might, “You all shut the fuck up and listen to me! I know my daughter and Nicole is in major pain that she shouldn’t be in. Do something now!” My parental authority had been spoken, perhaps not eloquently, but my message was clear. Everyone literally stopped what they were doing.
It was soon discovered that Nicole’s morphine pump was unplugged. Nicole had not been receiving the vital pain medication she so desperately needed this soon after surgery.
I was beyond livid and entering a dimension where I knew people could seriously harm one another. The mother lioness was on the prowl and looking for victims to consume. As I prowled the room and felt my mighty roar coming to the surface again, a gentle and large hand was placed on my shoulder. I looked over and there was Al, lovingly pulling me into his strong arms.
Al escorted me out of the room as the morphine pump began to pump the much needed pain medication into Nicole. The screaming began to subside to a subtle moan. Al and I sat outside the hospital room and cried our eyes out! Nothing could have prepared us for the reality of this surgery. Seeing your own child in profuse pain and screaming at the top of her lungs after her leg has been amputated seemed to be more than we could humanly endure.
I knew in my heart no human being is perfect, even in the medical community. The problem was fixed. Nicole was receiving the proper amount of pain medication and she was asleep and resting quietly. It did occur to me, however, I would now be Nicole’s #1 patient advocate. In the weeks and months to follow, I no longer sat quietly on the sidelines listening but became acutely aware of the process that was now taking place in my daughter’s recovery. I was empowering myself with medical knowledge so I could be Nicole’s advocate, not in a reprimanding disposition, but in a powerful partnership position with her medical professionals. I felt part of the process and Mayo Clinic supported this partnership and encouraged it.
After some time, the Prosthetist assessed the situation and decided to put a new cast on Nicole’s leg so he could remove the catheter more easily. Nicole was wheeled out of her room to have a new cast put on. She was soon back in her hospital room resting comfortably with a new cast. I looked at the clock and couldn’t believe nearly eight hours had passed since she had been wheeled into surgery. Time was dwarfed somehow into a continuum of events all merging together. I realized I needed to go home and somehow try and rest and decompress. Nicole was in good hands and being taken care of. Al and I kissed Nicole’s forehead and told her we loved her dearly and would be back first thing in the morning. We reassured her she was being taken good care of by the best nurses on the planet and she could go ahead and go to sleep. She smiled, closed her eyes and was fast asleep.