Day 751 - A Whole Day Inpatient 😷

Friday, January 20th, 2023

🌅 At some point, probably around 6am this morning once we were settled in the PICU James' IV came out. He was sweating pretty bad the tape didn't stick, so it got pulled out. Since he wasn't getting fed, he needed the IV fluids. They asked someone from the IV team who used the ultrasound machine to give him another IV. At this point, we've seen enough people try to do IVs and if they need to use the ultrasound machine it's usually not a good sign. This one was pretty difficult to watch because she put it in his right forearm (after it being on his right hand) and she was threading it into his arm which what felt like forever! Dad had to turn away. James was crying, understandably. Hopefully this one will stay in!

😴 Today we slept because we didn't at all last night. Barely anyone came in the room. Overall the room was nice, much nicer than St. Joe's in Tampa but not as nice as Wolfson's in Jacksonville (close though). Dad spent the day working at the little desk in the room. He connected to Wifi and had calls back to back. Mom was able to get a nap during the day with James. 

👩🏿‍⚕️We did have a doctor come at one point and we were questioning why they weren't going to continue Cipro. They said that the ER does their own thing and that the PICU follows their own protocol. Not sure why the hospital wouldn't work together to make a logical decision instead of letting egos make their decisions. The sputum culture 🧫 wouldn't come back for days but because it currently didn't show anything they didn't want him on Cipro. They did however say he had received a dose of Tobramycin in the morning because "he is currently on it". Mom let them know that was incorrect, and he wasn't on Toby. His last dose was on the 12th, and that his medications probably weren't listed correctly because of the language barrier we had with the doctor last night. Geez! We knew things would get screwed up! There were two doctors everytime they did rounds. 

James seemed much better today; no fever. Mom and Dad did his trach change that was originally planned for last night. They started reintroducing his feeds by starting at 5ml/hr and gradually increasing by 5mls every couple hours to eventually get back to his 45ml/hr. In the afternoon, James' IV came out again. His arm was all bruised. 😥 Mom asked the nurse if she could ask the doctors of we could not do another IV and just up the feeds instead. The nurses were all very nice but also seemed rather green. As long as they just let us care for James they didn't even need to be in our room. They probably loved it. In the evening with shift change there seemed to be some drama as new patients were admitted our nurse let us know she would be busy and unavailable. Again at this point, we would prefer to handle everything ourselves but 2 years ago with James in the hospital that would not have been cool.

At 8pm, we had a new RT come in, give James his pulmicort, and ask Mom if she wanted to be a part of rounds that was typically around 9pm. Around 11pm, the RT came in again to check vent settings and Mom asked if they had done rounds yet. She rudely responded with, "No, and they could do them whenever, they could even be at 3 o'clock in the morning, so I don't know. They are very busy and have a lot going on dealing with critical patients". 😳 Mom was so caught off guard at her respond. It was a simple question and her response was so ridiculous. We have lost faith the medical field having any bedside manners. Lord. Turns out rounds happened only a few minutes later and the RT never came in to get Mom. Our nurse let us know that during rounds they decided to agree to not do another IV and that he would be okay with the fluids he had and just to continue the feeds as scheduled. Chatting with the nurse Mom mentioned how he was on Toby but not the Cipro anymore. She said that there wasn't any note about him ever getting Toby this morning, so someone probably just forgot to add it. Hmm, seems like they are all over the place. 🤔 Safe!