"How could you let them do that to me?!"

About 20 minutes after having the NG tube placed. She is just amazing and so brave. I would have a difficult time
accepting the thought of having a tube put down my nose and throat, and being fed down into my stomach while unmedicated and wide awake. She did it, though!! I rarely cry in front of her, but after the placed the tube, I did hold her and cry. A mother's heart can only take watching her child in pain for so long.

After a couple hours, she is talking again and even has a few smiles. The tube going down her throat is super
uncomfortable, but she is doing well with it now. Mind over matter, strong girl.

Many things with Elizabeth's health should upset me very much, and while of course some things do, seeing this
IV set-up rolled in for Liz today made my heart sink. It sounds silly to most, I suppose, but this simple machine is huge to me.
For years, I have told myself that even with all of her GI surgeries and issues, at least she doesn't require feeds
(through tube or line)... and now she has one. Temporary, I keep reminding myself.
The GI team talked about Liz today during a meeting. The plan for this hospitalization- from a GI standpoint-is to
insert the tube (check), start a clean-out (check. the magnesium citrate is running in a crazy amount. This is to clean her out because
she is impacted with stool. Exactly like a colonoscopy prep, but on overdrive, so to speak. It is going to be a long night.),
she is NPO now (nothing to eat or drink) until she is cleaned out. Tomorrow night they should be able to start feeding her through the
NG tube. They will also give her lipids and a cocktail of other nourishment through the IV. That will run for a few days, and she should gain some weight. I heard from the GI doc that Infectious Disease has agreed to putting in a PICC line (stands for Peripherally Inserted Catheter. Think IV inserted into a deep vein.) being put in so that she can go home and get TPN at home for a couple months. I haven't seen the Hem/Onc team yet, but Pulmonary visited and she will have a Pulmonary Function Test while she is here, too. That is easy!
Pray for our girl tonight as the clean-out kicks in and she experiences a night of cramping and running to the bathroom. Here we go again. Yikes!
Also pray for her little spirit- she is afraid to sleep because she thinks she will pull on the tube and yank it out of her tummy. Poor thing.
Grateful for the prayers and love for our Liz. You would be so proud of her!!
Let's do this thing, Lizzie- show us how you are going to get big and strong!!!