Sometimes We Sleep
Our night nurse arrived at ten last night and we were in bed by 10:25 pm. She left at eight this morning. We crawled out of bed at 7:36 am. Nine hours of sleep. Rich and I both needed it. Nine hours is a good night of sleep for parents of a two year old. It is a very good, rarely experienced night sleep for parents of a trached two year old. It means everything that possibly could have gone wrong went right instead. It means a nurse was on duty. It means the room air compressor, oxygen concentrator, pulse oximetry, heated humidity, and feeding pump - the machines Nathaniel requires at night - worked properly. It means Nathaniel settled back into sleep with a few pats on the bottom or by repositioning himself after waking. It means the night went as we had planned and prayed.
We plan to hibernate on Friday nights weekly.
At our mitigation exercise after Nathaniel's trach pulling emergency earlier this month, we put a lot of new ideas on the table. One idea was to move nursing hours currently used at night to day time so we have more eyes on Nathaniel when he is active. This turns everything upside down. For almost two years, we've used the majority of our private duty nursing hours for overnights. We have had a morning shift so I could focus on homeschooling Josiah, but afternoons, evenings, and weekend days were left open without nursing coverage. The family time was nice. Things have been going well recently with nursing staff. If Nathaniel had not pulled out his trach tube, we would have moved into June expecting much the same nursing schedule that we had in May. But we can not ignore what happen. Nathaniel is at risk of removing his tracheostomy tube, doctors call it accidentally decannulating himself, every moment of the day. Even when buckled into his stroller with a five point harness, a time when most parents presume as secure, Nathaniel is vulnerable to a life and death emergency. His activity level, his precarious airway, his naivety to what is at stake, his two-year old-ness and the unpredictability that inherently brings to life are all new risk factors. We need more daytime help.
Our family will cover four nights - Saturday, Monday, Tuesday, and Thursday - ourselves. We have enough nursing hours after filling our new daytime shifts to have three nights covered per week. Thursday, our first night home from the hospital, was our first night without nursing scheduled. I went to bed around eight in the evening and slept until two in the morning. Rich went to bed at midnight and slept until seven in the morning. Ben, who just arrived home from a date and Josiah, who was waiting up for big brother by playing video games, bridged Rich's going to bed and my getting up. They had the freedom to sleep until noon. Hooray for summer.
This ability to juggle our sleep needs around Nathaniel's needs for attentive care is a luxury many trach families do not have. The committed participation of big brothers in Nathaniel's care and the flexibility Rich and I have without other small children is a collective gift we can offer Nathaniel. Older children away from home share in the giving by understanding new family routines, and Mom and Dad's limited availability to connect at their convenience. Rich and I could not do this work of caring for Nathaniel in this manner alone. Psalm 68 states that God sets the lonely in families. Because it takes multiple people to nurture and love a lonely person's brokenness and bring them full healing? Perhaps. A friend asked if we will ever get to the point where everyone sleeps at the same time and we trust Nathaniel's alarms to wake us if he has a need. Perhaps. There have been a few nights when a nurse called in sick that I slept on his bedroom floor with an iPhone alarm set for every thirty minutes to check on him. We are moving some bedrooms around to make that sort of sleeping a little easier.
Reality is that Nathaniel has needs through the night. A feed runs for five hours, has to be monitored and removed when finished. Heated humidity connected to his trach has to stay in place so he breathes warm, moist air all night. Cords from machines, that easily tangle or wrap around his body and neck, have to be readjusted as he moves in his sleep. Waiting for one of these potential hazards to escalate to the point of causing his oxygen level to lower and his monitors to alarm is scary. Trusting we will wake to his alarms is nerve-racking. We contemplate the potential consequences of everyone sleeping at the same time. It is unsettling.
For now, with Nathaniel's current needs and the support our family can currently offer, we chose to do it this way. More daytime nursing hours. Four nights without night nursing. Juggled sleep. Rearranged bedrooms. A family routine that centers on meeting Nathaniel's needs. We are learning much through this process. Far more than how to administer g-tube feeds or trouble shoot a defective heated humidity machine at three in the morning. We are learning about being a team. About depending on one another. About being honest when we need sleep. About being flexible. We are learning about welcoming boarder support as we accept meals from our small group at church and drop-by visits from friends and grandparents to encourage us. We are learning about change and growing and finding ourselves grounded again in the truth that does not change. God is with us.