My shift never ends. Upon the birth of my son four years ago, I was thrown into a world that I was familiar with as a nurse, but completely new to as a mother. My son, Tyler, requires 24/7 RN-level care, which I provide. He is medically fragile due to short bowel syndrome (SBS), has an ileostomy bag for the resulting and unremitting diarrhea, and is 100% TPN (total parenteral nutrition) dependent, which requires a central line for infusing. He cannot talk or walk (hes a fast crawler) and is bladder incontinent, which means he has to wear diapers. He also suffers from some extreme behavioral issues, including self-injurious actions like head banging and self-biting, and has an uncanny ability to scream for hours without losing his voice. For unknown reasons, Tyler rarely sleeps at night, which means Im typically up with him until 5 a.m. and sleep for only a few hours in the morning.
Rigorous ResponsibilitiesTyler with dog, Bradley, and mom, Laura Park-Bailey, RN
Every day I provide the following: TPN administration; ileostomy management (emptying his bag at least 12 times per day); peripherally inserted central catheter (PICC) line care, including flushes and dressing changes; administering IV antibiotics; organizing and ordering supplies; physical and occupational therapy (with the guidance of those specialists); and transporting Tyler to appointments.
I also perform all regular motherly duties, and some of them might be more challenging than expected. Because Tyler is connected to his TPN bag and pump for 17 hours per day, Im constantly chasing him around with his bag and pump so we wont have an accident wherethe tubing breaks or, even worse, the PICC line dislodges.
For medical reasons, Tyler is nursed several times daily. In between the times I run after him, I wash four loads of laundry and steam clean our floors at least twice each day, due to leaky ileostomy bags. I also cook, clean, sanitize, and walk him in his stroller to lull him to sleep in hopes of having a rare hour to myself.
There are times when I want to quit: Im exhausted; the pump wont stop alarming; Tyler wont stop crying; medical suppliers wont stop calling; and Tyler is sitting in yet another large puddle of ileostomy output and splashing, right after I finished cleaning him after his last spill, to name a few. Im often reminded of that 70s commercial where the stressed mother cries out, Calgon, take me away!
I had to learn to accept help from others and, even more difficult, learn to ask for it. Being a nurse made me feel as though I should be able to handle any situation that involved my child, medically fragile or not. But Ive learned to put aside my intense fear that something horrible might happen to him should I allow anyone else to care for him, my husband included. By permitting others to help me, Im able to be a better nurse-mother because I have time to clear my mind, which gives me the strength to press forward.
I belong to an online group of parents of children suffering from SBS. I have also adopted a Newfoundland, Bradley, whom a professional and I are training to become a service dog for Tyler. When Im working with Bradley, I am encompassed by the magical love of a dog, who somehow knows hes got a big job to do. When I feel like Im the most unfortunate woman on the planet, I am quick to remind myself my son is alive, and I am able to hold him, smell him, hear his contagious laugh, and watch him grow.
Last night, I carried Tyler, kicking and screaming, up our stairs to his bedroom for bedtime. Each step was difficult; my muscles burned, and my patience was tested. The top of the stairs seemed like an insurmountable feat, but I continued on, and when I reached the top, I hugged Tyler and told him I love him, no matter how much he screams. This scenario was so metaphoric of my life: I have a difficult load to carry, but I am able to do so with small steps, adjustments, strength, a visible goal, and an enormous amount of love.