Post-It Note Parenting
I crawled into bed at five thirty-three Monday morning and put my head on Rich's shoulder. It was the first time we had shared the bed that night. "Just coming to bed?" he asked, "How is he?"
"Yes. He's asleep. Thanks for the notes." I responded. Neither of us said more. For a few moments the only noise in the room was the hum of the air compressor for Nathaniel's heated humidity. I drifted into a light sleep, and Rich's deeper breathing resumed.
From under his pillow the alarm on Rich's cellphone went off. Five forty-five am. The shoulder I was using as a pillow moved and then was gone.
Nathaniel was getting sick when I hit "Save and Publish" on my blog post about feeding last week. My uncertainty of how frequently we would need to return to tube feeding during a respiratory illness was less predictive than reality. He started coughing and sneezing on Tuesday; he quit eating orally the same day. By Friday we were in full sick mode.
Respiratory illnesses have some predictability now. Low-grade fever and increased watery white secretions usually mean a virus. High fever and thickened discolored secretions typically indicate a more severe bacterial infection. Both can bring high heart rates, increased respiratory rates, coughing induced vomiting with risk of dehydration, course or wheezing sounds in his lungs, retraction, and a need for oxygen. Care is provided in four hour increments that begin with nebulizer breathing and vest treatments given simultaneously. The vest forcefully pulsates air against Nathaniel's chest for twenty minutes loosening secretions while the breathing treatment works to open his airways.
The goal is avoiding the emergency department and an admission to the hospital. Both bring trauma and exposure to additional germs for Nathaniel. Usually both find us consulting with medical professionals unfamiliar with his case. Nathaniel worsened Friday night and Saturday; the desire to avoid the hospital is even greater on weekends than during the week when his doctors can be easily reached. Upon hearing his symptoms, a nervous resident, unfamiliar with our experience of caring for Nathaniel when sick, will sometimes insist on an evaluation. Getting discharged from a hospital is harder for Nathaniel than getting admitted. For much of his life, baseline suctioning needs when healthy could alone warrant the support of a hospital; the reason why he qualifies for private duty nursing in our home.
Sick days bring a heightened need for continual evaluation. How many milliliters of fluid did he have? Did it stay down? How is his urine output? How high is his resting heart rate without Albuterol? With? How many liters of oxygen is needed? Doctors have given ok-to-stay-home parameters for every vital sign. Last weekend Nathaniel repeatedly tiptoed up to those lines and back again. Saturday night was equally as difficult as Friday night. One of us was awake to help the private duty nurse much of the night, not because of her inability, but because sick children want their parents. Nathaniel's nurse left Sunday morning; her next shift was not until Wednesday and then just for four hours.
The round the clock schedule of care giving when Nathaniel is sick is grueling for Rich and me. We forsake sleep in attempt to control Nathaniel's cough and keep him hydrated. We offer fluid, sometimes just an ounce every twenty minutes, by g-tube immediately after the vest treatment when his airways are the clearest. We encourage him to rest before the coughing starts again. We leave notes to each other to limit mistakes in administering medications and to watch for patterns in decline. Our four hour shifts are reduced to three by three inch squares left on the kitchen counter.
Post-It note parenting, the nick-name we've given to the days when Nathaniel's medical care usurps all other needs in the house, takes a toll on more than our sleep. It is hard on our family life, our older children, and our marriage. The loss of companionship, the absence of doing life together side by side, and being on the same schedule creates a unique form of isolation and loneliness in the middle of busy family life. It tries our patience. It stops progress on therapy goals. It cancels plans. It prevents grocery shopping and getting a meal on the table. It resembles the early weeks of parenting a newborn.
Another week has passed. Nathaniel has improved, but is not one hundred percent yet. Care blocks have stretched; a breathing and vest treatment now subdues his cough for six hours, but the cough still frequently causes him to vomit. He refuses to eat orally, carries his blanket from place to place, and puts his head on my lap or against my shoulder when I read to him. Getting well takes time. We have successfully treated him at home, but illness has again robbed Nathaniel of time to work on multiple word combinations using his device, eating, cutting with scissors, climbing steps with alternating feet, and normal days.
Illness has again robbed not only Nathaniel's life, but ours. Managing Nathaniel's chronic medical conditions might always demand shift-work parenting. Acknowledging the realities of our son's need and finding ways to thrive within the limits that his conditions place on all our lives is part of this journey. It is a God-sized job. Because denying self and sacrificing for another is not the natural inclination of our hearts. Being intimately liked to Nathaniel's hardships is not only for his benefit. God is changing us through the process.