7/30/18 BMT Day +89 NG Tube Feeds Begin Again

What a GOOD DAY!!
10% Steroid wean- a success
Addition of new pain med, Bentyl- tolerated
Pain management- not better yet, but we have many plans in place and are making progress
Addition of 2 ml of feed through NG tube- begins over night
Soup- see below

I have heard the weaning high-dose steroids being referred to as being hit by a truck. Well, this little 28 pound peanut is too strong for the toughest of eighteen-wheelers, she won’t be slowed. Tomorrow she knows that she gets to try SOUP again (it has been two weeks since she has had anything by mouth.) She is HUNGRY. At bedtime tonight, she told me she is getting up EARLY because she gets to eat!! (Um, Reese gets up between 4-5am anyway, I don’t know how to tell her this, but if she gets up too much earlier it won’t actually be tomorrow!)
The lining of Reese’s intestines completely stripped and shedded, she is raw. I pray these little additions of feed and soup are well tolerated. Her body won’t be able to absorb this for nutrients, yet. But a little “food” will activate the gut and encourage healing. I’ll keep you posted on her first soup, hopefully it isn’t happening before 4am!

I think I will spend the rest of my life trying to repay the kindness that has been shown to my family throughout this ordeal. But what a life’s quest- to have too much kindness to possibly repay, what a fortunate goal to have. I will do my best. My village makes me strong, the same village that is raising my children, the same village that will mold them into the exact thoughtful and kind people I want them to be. This world we live in is SO GOOD! It’s so inspiring. Thank you.

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