12.3.21 Trach Floor 38

Ed’s blog post

Our morning got started around 2:30 am when Aimee woke up pretty agitated with a higher heart rate. Tried several things to provide comfort without success. In the morning agitation and heart rate continued to increase causing us to look into some issues including abdominal x-rays and also a urine culture. Unfortunately, it looks like Aimee may have yet another UTI. Agh this is so frustrating. It also causes just a slight PTSD for me knowing how hard we have tried to keep her from getting them and also how much they can affect her body. 

There was white blood cells in the urine sample, but not enough evidence to convince the team that we need to start antibiotics yet. Should know more about what’s in the sample tomorrow. The abdominal X-rays confirmed the J tube was still properly placed. Unfortunately, not really a smoking gun to show us why Aimee is so agitated with an increased heart rate. Thankfully, she did respond well to the stronger of her pain meds Nalbuphine and she rested well today. 

We have not seen a decrease in her output in the NG suction since turning off her food and water through her J tube. I guess I shouldn’t be too surprised that this didn’t help. In good news, if we do have to go home with the NG suction tube, the Care Coordinator has found us a machine that we can take home that will actually accomplish this. We were originally told there wasn’t such a thing. The one caveat to it is that the home care company that has it doesn’t rent it. It needs to be purchased. The Carousel team that oversees Aimee at home Palliative/Hospice care has already agreed to purchase the machine for Aimee if she needs it. How cool is that! It really feels like people are going above and beyond to help us accomplish the goals we have for Aimee.