11.18.22 Trach Floor 23

Ed’s blog post #11

Today did not start out well for either Aimee or I. We had a nursing change at midnight last night that included additional instructions and less sleep for both of us. Only to wake up to find that Aimee’s Ostomy dressing has leaked for the second day in a row. I am definitely missing my Ostomy changing partner aka Rosa. It was also very apparent this morning that Aimee was in discomfort. Her belly was distended and tender to the touch. 

I pulled back her rate of formula that we increased at 6 AM to 10 mls an hour. The team was quick to agree with me and really let me direct what was best for Aimee’s comfort. It’s always so nice to have them respect what we see Aimee telling us. After about 4 hours she had settled back down and has been more comfortable, although still distended and doesn’t appreciate her belly being pushed on, which is something she was okay with yesterday. The team also added some more medication that should help with the lining of her stomach since we were starting to see some bloody output in the NG tube from her stomach. 

Today we had a visit from Palliative Care. It is always so nice to talk with them. The great thing about their care is that they are looking at the whole picture of Aimee, including how that looks for us as a family. As we discussed the different paths that this stay could lead us, they said multiple times how impressed they are with Rosa and I’s decision making for Aimee. It was very reassuring to hear them say that, as it is so easy to question the decisions we make for Aimee. 

Aimee has ended the day calm and peaceful. She even got a full bed bath and her hair washed. Not always the easiest thing to do, but it feels refreshing for Aimee. Or maybe that’s just how I feel for her.