The Journey of James Weston

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 wo...

Sunday, March 6th, 2022 Check out the video below. James make the sweetest sound and doesn't cry a tear! He is getting the hang of the passy muir valve! 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...

Saturday, March 5th, 2022 James had some Daddy time in the morning. He is learning how to turn the pages! We did another Passy Muir Valve trial in the evening but James continued to cry and cough for the whole 3 minutes, so we decided not to post that video. We also watched Cruella on the wall projector 📽️. Then James was fast asleep like an angel! 😇 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...

Friday, March 4th, 2022 We started off the morning with physical therapy at 8am, when that was over Mom started getting James down for his morning nap. Mom looked at the online portal and saw the results had come in for the bloodwork. James numbers all looked great, all within range, even on the higher end. Mom let the nurse know the numbers looked great and that we would be hearing from the Doctor soon. Mom reminded the nurse not to give him the Sodium Chloride, but then out of nowhere the nurse blew a gasket! 😤 She just went off about how she was going to give him the med because there was not an order to "discontinue". There may be a language barrier here because Mom already explained that "holding" is "refraining from" for a period of time and that we would hear from the Doctor on whether or not we would start again. She did not understand the order and instead got really rude with Mom repeatedly saying her name in a condescending tone. Mom let her kn...

Thursday, March 3rd, 2022 We had a Speech Therapy appointment in the morning and then we did labs afterwards.  🗣️ At the Speech Therapy appointment we got an order that it was okay to increase his trials to 2x a day for 3 minutes. We did a trial in the office and James cried again. 😭 This was the first time our nurse was able to hear him. She didn't really have anything to say about it. 🙄 We left the appointment with the understanding that we would be scheduling a swallow study. Yay! 🎉 🥼 Afterwards, we went upstairs in the same building to the lobby waiting. There is a kiosk for walk-in lab appointments. We signed James in and waited a long time. Finally someone came out to call James and Mom double checked to if the IV team had been requested (this had automatically happened the 3 times prior). The lady said that they were dealing with new staff and no one knew to request them and if we really wanted them it would be another hour. OR she said we could just try and get a finge...

Wednesday, March 2nd, 2022 Our day started out with our nurse giving James Sodium Chloride even though the order was to hold for one week and then get labs to evaluate. We are going for labs tomorrow. Mom tried explaining this to this nurse but it was very confusing to her. 🤦🏻‍♀️ The nurse just kept repeating herself saying, "we don't have an order to discontinue". No, not yet but the word "hold" means "refrain from". Well the nurse had already put the medicine into his feeding bag, so we had to dump the entire bag. We didn't know how much actually got to him, which could mess up his labs tomorrow. Of course none of this was charted in the nursing book. No apology, no ownership, just blaming the other nurse for "miscommunication". 😂 We had a pulmonology appointment in the afternoon. Originally they wanted to cancel this appointment because James was no longer getting synagis shots. Our insurance was only going to cover 5 injections, si...