Journal entry by Mayzie Walker

When does it end? Sorry I didn’t post yesterday. Tenley got home at 2:30ish yesterday. She’s been miserable. The feeding tube was supposed to run 24/7 either attached to the IV pole or in a backpack. As you can see in the first picture it did not go good. It was extremely uncomfortable on top of already being nauseos and vomiting even though there was nothing in her stomach. She didn’t sleep all night she was so uncomfortable. Ten said it’s the worst thing she’s had to deal with through this whole process, which says a lot. Especially considering how much she’s been through.

After talking with her team today, and Tenley telling them it’s the worst thing she’s been through we decided to take it out. We did discuss multiple options, like keeping it in but not do feedings, different medications, etc. Ultimately taking it out was the best decision, so we did. We’ve got some more meds on board, hopefully we get through the weekend okay and we are back to Rochester on Monday. Ten feels a lot better with it out, still some nausea but she’s been drinking some with no vomiting. (Second picture, much happier) 

At this point I’m feeling defeated. We just spent the past 4 days in the hospital for something that didn’t work. We go back Monday for probably another hospital stay and IV nutrition. It’s hard to see where we go from here, what’s next....

I’ll update Monday. 

Also we were washing her sheets! 😂

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