Mylin’s Angry Pancreas

July 3, 2026

My started the day definitely out of it and also agitated. They were very sleepy, but it was like their body wouldn’t let them rest. Their limbs were a little twitchy. They would fall asleep and start talking nonsense like “Whatta ya have? They have the best scooter drinks.” “You could have some pain, up to two days. That’s what happened to me.” “Pugs, we should talk about pugs.” “I always beat up guys” Lol. They told the nurses to knock it off or asked what the heck they were doing a few times. They also started grabbing cords. That parts just freaky. At one point they almost knocked a tower onto the bed. They also grabbed at the port into the neck vein and tried pulling the abdominal drain tube. I felt bad because you could tell it was frustrating My, all they wanted to do was sleep. Since Daniel is staying tonight, I let our amazing nurse, Maria, know. She said oh yeah I was told they normally talk in their sleep. I was like only since surgery and today they’re just saying totally wackadoo stuff, are even a little disoriented when they wake themselves up, and I am afraid they are going to hurt themselves with the cord pulling or scratching at and messing with the neck port. She said that was good to know and once all of us are gone, asleep, or too tired to keep watch she would sit closely and keep a close eye to ensure My wouldn’t hurt themself accidentally.

Oxygen was still an issue. While the goal was to try to wean them off or lower the dose today, that didn’t happen. The levels kept dropping. The nurse upped the dose before I left. We were also having My do coughs (which weren’t happening) and throat clears followed by deep breaths and that would get oxygen up. They want My to work more frequently and linger with the incentives spirometer (lung breathing exerciser) to build up some more lung strength too. My will need to be close to a 30° angle for sleep tonight due to those fluid filled lungs and the dropping oxygen. When I was leaving they seemed to be falling into a quieter more restful sleep, so I hope they get a good rest tonight.

PT didn’t go quite as well today. Actual PT is out for the long weekend, but told us to ensure our nurse still do it with us. I think this nurse was a little nervous about it and only had My get out of bed and into the chair pushed right up to the bed. No steps. My’s blood pressure did drop down quite a bit when they sat up today. Not as bad as the first day by any means, but not nearly as good as yesterday. Our night nurse is going to encourage our day nurse to do more PT tomorrow.

My had belly pain and nausea today, but it didn’t seem as bad as yesterday.

A nurse told Daniel she has worked with a lot of TPIAT patients, and usually around or right after day 5 they start to turn the corner where it’s a little better every day.

Below is My during PT tolerating the chair after getting up. Having them travel even the shortest distance with all of their accoutrements is quite the fete.