Marty Barnes, the writer and mother behind CaseyBarnes.org, will talk today about the beginning of their journey with home care nursing in the second of a five-part series. You can find the first post here. Be sure to check back in each month as she talks more about the advice and knowledge they’ve gathered over the years!
Marty and her husband Tim have been married since 2005 and welcomed their only child in 2006. Marty’s daughter, Casey, was born with a severe brain injury (that includes MANY complications). She has defied all odds since day one. Casey loves to sing, dance, do arts and crafts, swim, watch movies and snuggle. She is nonverbal…but VERY good at making her point. Every day with her is a gift and an adventure.
Marty is very active in the special needs community, virtual as well as physical. Each year Marty and her family host holiday parties for local central Texas families with children that have special needs. Marty also has many tools and resources that she has developed over the years to help other families like hers. These tools are available on Casey’s website for anyone that is interested.
Casey 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 pulse ox 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 (families will need to speak with their physician to determine if they qualify for night nursing). 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.
We 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.
With day and night nursing, there is most often someone here with us. Adjusting to having a personal life with people working in the house is tricky – we are aware of noises, where the nurses are, and if they need anything.
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.
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.Originally published: January 20, 2016