The Night Shift :: Why There is a Nurse in Our Home While we Sleep

The last day of February each year is designated as Rare Disease Day. The purpose of the day is to bring awareness to the 1 in 20 people worldwide who will at some point live with a rare disease. This is defined in the United States as a disease that affects less than 200,000 Americans at one time. The last we heard, there were less than 25 people worldwide diagnosed with my son’s specific genetic condition, so he definitely qualifies as rare. I have written extensively about my son Grayson and the unique experience of parenting a child with a rare disease and profound disabilities. This year for Rare Disease Day I want to bring awareness and recognition to an invaluable part of my son’s team of caregivers :: his home health nurses.

Grayson has two nurses who each work three 12-hour shifts in the week. When I tell people we have nurses in our home, at night, for 72 hours a week, the reaction is usually curiosity and confusion. They typically have 3 questions:: Why do you need nurses? What do the nurses do? and the one I get the most often, What about your privacy?

Why Do You Need Nurses?

Parenting a medically fragile child is similar to caring for a newborn, day after day, month after month, year after year. While some aspects do get easier over time, the physical toll and exhaustion on primary caregivers does not. Grayson is total care, meaning he can do nothing for himself, similar to an infant. Since he cannot sit up on his own or coordinate the movements of his body adequately, his caregivers have to bathe him, dress him, prep his feeds that he gets through a feeding tube, administer medication and breathing treatments, and make sure he’s comfortable in his bed for sleeping. In addition, he needs to be closely monitored for any signs of distress throughout the night. 

What Do the Nurses Do?

Our nurses, V and S, arrive at our house promptly at 6:00 pm on the day of their respective shift. I am a stickler for punctuality, and in the past have “fired” nurses for whom being on time was a low priority. Typically when the nurse gets here, she spends a few minutes clocking in, washing her hands and prepping meds and equipment for the evening. She changes out the bag from Grayson’s feeding pump and preps and primes a new bag with formula. Then she will spend some time with Grayson, holding him and making him laugh. He absolutely adores both V and S. 

When it’s Grayson’s bedtime, the nurse takes him in his room, does his nightly breathing treatment, bathes him and lotions his skin, and dresses him. She administers his nightly medication through his G-Tube and later washes the syringes {probably my least favorite task}. She hooks up his feeding pump to his G-Tube, because he is fed continuously throughout the night. She checks his temperature, oxygen saturation and heart rate, positions him comfortably in his bed, and leaves him to fall asleep.

Throughout the night, the nurse either reads or watches television in our living room, while periodically checking on Grayson, making sure he is sleeping comfortably and safely, and checking to see if he needs to be changed. Grayson usually wakes up during the night a few times, coughing and retching, so the nurse turns him on his side to prevent aspiration and to comfort him. 

In the early morning, the nurse changes him, gets him dressed for school, administers his morning medications, and adds more formula to his feeding bag. Sometimes Grayson will fall back asleep, but most of the time his nurse puts on his favorite music on his iPad and he will listen contentedly until the rest of us wake up and get moving. 

The nurse also takes meticulous notes, writing down his medical stats as well as notes about his appearance, behavior and yes, bathroom habits {have your ever made a log about your kid’s pooping? I have about 7 years worth of those logs!}. She is required to turn in all the notes to the nursing agency. 

What About Your Privacy?

To be honest, it was indeed a huge adjustment when we first started having nurses in our home at night. Of course it’s awkward to be sleeping, knowing someone outside our family is awake in our home all night long, and then seeing the parts of family life we could otherwise keep private. And our nurses do indeed see it all :: the good, the bad and the ugly. They see when my house is a complete wreck. They see when my younger kids melt down, and when I lose my patience with them. They see when my husband and I get in little spats. They see me walk around {a lot} without a bra on. 

Yes, we sacrifice a lot of privacy to have the help the we need for Grayson. But it is absolutely worth it. And V and S have each been with us for over two years; I am adamant about having consistency in Grayson’s life, so I insist on nurses who will be able to be with us long-term. They are an integral, ingrained, normal part of our family’s life. Just like anything else, over time, we have adjusted and it is not awkward at all anymore. 

I am a better mom to Grayson, as well as my other children, because of his nurses. Instead of getting up with him several times a night when he wakes up, I am able to sleep. Instead of constantly worrying about him when I’m not with him, I am able to relax. While I can do everything medical the nurses do for Grayson, most of the time I just get to be his mom because they take that burden from me. 

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