Day 386 - Broken Cheap Plastic Pieces

Thursday, January 20th, 2022

Nurse worked today because she wanted to get some extra hours in. Sure, why not.

The nurse's shift is supposed to start at 7am, but we have never had our main nurse show up on time. Typically 30-45 minutes late everyday. This would never fly in any other job. But it's also not worth it to say anything since we've had so many nurses who were worse, we wouldn't want to lose this one. They say, "The Devil you know is better than the Devil you don't". So we'll just stick with her. At 7am, Mom typically does the feeding bag, diaper change, pulse ox change, suctioning, and sometimes venting. Recently James has been sleeping right through this and is back to sleep by 7:20am which allows Mom to also go back to sleep. When the nurse comes it's a rare event for her to just quickly greet the nurse, do report on the evening and night shift, and get to go back to sleep.

Today started off with Mom getting woken up by the nursing yelling, "Help, Help!". A piece of James' circuit broke and she was holding the pieces together with her fingers, she was unable to replace with piece without a 2nd person. Essentially she was holding his circuit together. It was an easy fix with just replacing the piece that came apart which was the omniflex (photo below). It's cheap plastic, literally no glue just plastic shoved into plastic so it doesn't hold too long, especially when we are constantly disconnecting that piece to put James over and under the bed railing. Mom reached out to the Mom of Trach Babies group to see if anyone else was having these supply issues. After James was secure Mom showed the nurse what to do if this situation ever happened again and no one is around. You simply take out the piece that broke and it connects together. The circuit will connect directly to the ballard without an omniflex. Then you can prep and replace the omniflex.

Other than the regular eye patching and physical therapy, James took some selfies today. Mom had her monthly 1 hour update call with Medicaid to go over any changes in the last month. The nurse left around 4pm. In the evening, James fell asleep while being held, waiting to start his trach care. We did his trach change with the same trach he's had since June. Ridiculous. Mom removed the trach and Dad put the clean one in. This time Mom was able to change the ballard at the same time reconnecting his oxygen. James did great! 😃👍

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...