11.21.21 Trach Floor 26

That 6 days at home was the longest I have ever left Aimee here. Coming back was really hard. Mentally adjusting to the hospital routine and emotionally reattaching to Aimee’s care. I loved my time at home so much and I don’t want us to be here any more. I just want to be home together. This is too much. Yet… another day forward.

Aimee is having a little slow down on her progress today. She has been swollen with some fluid retention, more bloated, and uncomfortable again. We didn’t make our food advance this evening. I am hoping that she will get a good sleep tonight to be ready for an advance at 6. 

She did get to have a nice thorough bed bath today. I even gave her a haircut with surgical scissors. We’re ready to face a new week now.

I had discussions today with both the medically complex nurse practitioner and with our attending about the future. On one hand we have made a bit of progress. We hope by the end of this coming week to be clamping the NG tube and seeing if Aimee can tolerate having that removed soon. It is one thing that we cannot take home with us. On the other hand, the team is preparing for the possibility that we may take Aimee home on TPN. 

There is a lot to say about that with risks and rewards, but essentially they are considering the diagnosis of intestinal failure. If it is decided that some level of longterm TPN is best for Aimee, it would potentially mean a much shorter stay. We could potentially be going home at the end of the year. Without it, the gut stuff could keep us here for extra months. With it we may have more small hospital stays in the future due to risks of infection. Without it we could have some more quite long stays in the future due to intestinal blockages and hydration management. We are praying for wisdom.