Thursday, March 16, 2017


"experience: that most brutal of teachers. but you learn, my god do you learn"
(c.s. lewis)

we are tired. exhausted is probably the right word actually.

doing feeding through nose tube at home requires waking up at least every 2-3 hours to check the line, take meds, adjust if the alarm is going off, etc. so it makes for a long night, and more complicated then when the nurses had the ability to do it all solo. doing it all at home is a different beast for sure but we will continue to get used to it because we simply don't have another choice.

my feeding through the tube lasts about 12 hours for each run now, and i am still also trying to eat some food through my mouth to get it into my stomach in addition to the intestine where the feeding tube goes. it is a careful dance now of when i eat compared to when we start the line feeding to find the right balance of nutrition but not dependency on either feeding mechanism. obviously the overall goal is for me to go off the feed line and eat only through my mouth. but my appetite and my pancreas is not there yet.

i decided to head into work for a bit today and it was nice to see familiar faces and not the four walls of the hospital room. it was an odd experience to go to work with the tubing coming out of my nose and across my cheek and down my face, walking with a cane, jeans and a hat on because i knew i couldn't do it if i was uncomfortable on top of everything else. i didn't do a full day and that was a good call. i had reached my limit by the time that i walked out the door mid-afternoon.

we expect to do the home feeding through at least a good part of next week. i have doctor appointments next week to check in on how things are going. the home feeding will always start at night so i don't have to do tube feeding when at work or outside of the house. i am thankful for that, i was dreading having to do the feeding outside of the hospital or our home.

so we will see how tonight and tomorrow goes, and continue to carry on.

there is of course much more i could write about on how i am overall feeling these days but i am just too tired to write much more - that will all come with time.

i hope that your weekends are good ones. as you can imagine, ours will be very low key as i rest and try to gain strength and getting my stomach/pancreas on the mend. maybe also sneaking in beauty and the beast if we are up to it.

have a great weekend, thanks for all of the support and love and vibes.

happy friday peeps, have a good one. xoxo


  1. It was great to see you and your guest blogger today at work. We have missed you!
    I'm sure it will get a little better every day. You are such a good fighter and we're here for you. Sending good thoughts always!