Day 432 - Mom & Dad Discuss Nursing

Monday, March 7th, 2022

Our nurse worked today and it was awkward. After how she acted Friday we figured it just wouldn't be the same, and it wasn't.

Mom had a Doctor's appointment early in the morning, and as she left Dad and the nurse were discussing eye patching as well as getting James on a schedule. More to come on that later...

In the afternoon, James had a visit from the Clinical Nurse Supervisor who only told the nurse she was coming and never contacted Mom. She is supposed to come once a month, but due to the shortage of staff comes every 2 months. Mainly just a lot of administrative duties that is required by the staffing agency, like documenting any changes and updates to James' medications and orders. During this meeting Mom received a text from the staffing agency that our Tuesday nurse would be not be returning effective immediately. This was actually great news since Mom wanted to let her go anyways. Supposedly she just didn't like the schedule and worked too many days. We didn't need an exhausted nurse who watched movies all day and didn't know how to work an oxygen tank (oh wait, that's all the nurses!). 

In the evening, Mom and Dad chatted about the conversation he had in the morning with our nurse. It turns out it didn't go very well. She basically said that 1) She didn't feel like we needed nursing (Why? Because Mom does everything.) 2) She expects Mom to do everything "because she is the Mom". 3) She said that Mom should be exhausted from working both Day and Night Shift because "that's what's it's like being a Mom" (like we don't have a medically complex baby 🤔) 4) She didn't want to work with us on James having a schedule. She said, "I work 12 hours and I'll get everything done within those hours" 5) She felt like eye patching was too much for her to handle because she is busy doing stuff.

After Mom and Dad talked it was pretty apparent that we should cut nursing. Mom was just so sick of it. Here was our Pros and Cons list.

Pros

• A 2nd person to sit in the car when going to Doctor's appointments (notice we didn't add to help with loading and unloading the car). This is literally just sitting in the car. We could hire someone off Craigslist for this
• Allowed Mom to run an errand (But recently with how many accidental vent disconnects Mom never felt comfortable leaving unless Dad was available too)

Cons

• Overcomplicates the littlest task to make everything seem overwhelming
• Disrespectful to Mom, yet basically bows down to Dad (possible culture thing)
• Lacks knowledge of how to use an oxygen tank after 10+ years of nursing
• Changes medication orders on personal preference
• Stupid daily mistakes made of basic nursing tasks (Incorrectly setting up Farrell bags and feeding bags to leak all over the bed, forgetting to plug in equipment after returning home, asking Mom the same questions over and over, accidentally disconnecting James' circuit from the vent due to lack of preparation).
• Needing more training after 5 months
• Knowing she wasn't comfortable with CPR or Trach care. And knowing that their CPR assessment test was written multiple choice. 😱
• No privacy in our home
• Dreading the next day knowing a nurse would be coming
• Being late 30-45 minutes everyday for 5 months 
• Never apologizing for screwing up or being late
• Could go on and on...

But why did we kept the nurse so long? Because this was the best of the nine! 

Mom working with James on Arm Day!

P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...