Nursing – Night Nursing (Part 2)

caseytuckedinCasey slept in the middle of our bed. I had to position myself just right so that I would not pull on her feeding tube or pulseox when I moved. Some nights I had to watch for oxygen as well. I was able to sort of dislocate my hip and kick my foot out to turn on suction throughout the night without actually getting out of bed. Most nights Casey would sleep with her head on my shoulder.

Casey is non-mobile, but somehow she would find a way to turn nearly sideways at night. We upgraded from a queen to king and that bought us some time, but my side of the bed was getting smaller each night. I eventually ended up spending many nights at the foot of the bed. I felt more like the family dog than the mom.

Around Casey’s 4th birthday I had had enough. I HAD to get some sleep and it was time to get a night nurse. Tim did not want a night nurse at all. He was not the one up all night suctioning, medicating, feeding, etc. so of course he didn’t see the need. This was one of the times I used my veto power and told him there was not discussion, it was happening.

tiredmomWe started with 5 nights a week, 8 hour shifts. The nurse would come in at 10:30pm and leave at 6:30 the next morning. The first few shifts were awkward. I stayed up the entire night with the nurse and would tell her what every sound meant. I showed her repeatedly how to suction, how to prepare Casey’s formula, when to do certain things, etc. I was very excited about getting to sleep at night, but I was also terrified. After I was sure the nurse was trained to manage Casey’s needs (after about a week) I tried to go to bed. I would sleep for maybe an hour then wake up in a panic. I would run to Casey’s room to make sure she and the nurse were okay.

Each night I would sleep a little more than the night before. I trusted the night nurse to care for Casey and that she would wake me if anything happened, my body just didn’t know how to sleep anymore. Eventually I made it through most of the night without waking up. It had been more than 4 years since I had really slept. I had no idea how sleep deprived I actually was until a few good nights of sleep. I am still kicking myself today for not getting night nursing sooner.

Having night nurses took some getting used to. I still don’t sleep through the night, and all of the nurses know I will pop in from time to time. We have had a few fall asleep, and that is a fire-able offense regardless of how long they have been with us.

It took a little while to get Casey used to sleeping in her own bed and in her own room. Once she adjusted though, she loves it. She refuses to sleep anywhere else, and she doesn’t let anyone sleep with her.

Before we had night nursing we were very creative with our sex life. We would hook Casey up to the monitors and baby monitor and then quickly go to the other room before she woke up. With day and night nursing, there is most often someone here. Adjusting to having a sex life with people working in the house is tricky. There is a really funny scene about this in ‘Extraordinary Measures’. We are very aware of any noises, where the nurses are, and if there is a chance they may need something, then sex has to wait. Lately Casey has needed oxygen and the loud concentrator has been helpful.

It takes a lot of adjusting, but sleep is so important. My health when I am able to get some sleep compared to those 4 years without is hugely improved. If you have a child that needs care throughout the night, I strongly urge you to try and get at least some help.

This article was originally created for and published by Pediatric Home Service

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