Update

My earlier post turned out to be much different than I'd planned, and in the middle of all that emotion, I didn't include facts of what has been going on with Liz the last two days. Here is a feelings-free, unemotional re-cap....though I can't promise I won't use a few choice words.
On Wednesday night, the docs dropped Liz's night feeds to half the calories as she'd been getting, just to see what would happen. As a result, she lost over a pound. So, last night they bumped the feeds back up and today her weight showed she gained the pound back. Yay for a gain.....but what a bummer that her body isn't gaining or maintaining without the NG tube feeds. Also a bummer is the fact that with the increased appetite stimulant dosage and increased calories with the feeds, she has not gained much at all; hasn't gained much more than she started out at when she was admitted. Because of that, and because the doctors think she needs help, the plan is now to put in a PICC line so that she can go home on TPN (nutrition in the form of lipids, amino acids, etc. given through an IV). TPN will be given for a few months, and if she continues to need support for weight gain, she will have a Gtube placed in her abdomen.
Tomorrow she will have a study done that tests how many calories her body is burning while at rest and how many calories her body requires to meet her metabolic demand- which her doctors know, and labs confirm, is high. Meaning, Liz burns through calories in large amounts simply by being at rest.

Many have asked why. Why is this happening? Why can she not gain weight? Why does she have "severe failure to thrive"? The docs think it is a combination of things, primarily having to do with her bone marrow. If her body is working extra hard to make marrow, then that puts a demand on her other systems. Nutrition is so effected and plays such a role in our system. That huge issue, mixed with her motility problems and her body not ever having a chance to recover after each infection, adds up to a huge problem.
The TPN should help. And, once she gains weight her Prealbumin count will go up and her strength will begin to return, and she will just feel better. Shell also be able to fight infection better, of course with the help of the IVIg as well.

She had labs drawn tonight (CBC with Diff.) because Hem/Onc wanted to see how her WBC, ANC and Plateletes are looking this week. GI wants to see how her cells are looking on smear.
She also had an xray done this afternoon because of issues she has been having the last few days. Those pictures show that she is becoming impacted again. Unbelievable. Something new is going to have to be done for motility.

So, we've been here 10 days and will be here at least a week more. So, so long! Her OR time is scheduled for Monday at 1:00. PICC will be placed, they'll start using the line and watch her for a couple days while I get the education needed to be able to run the IV at home by myself, and we'll get home health care set up during those days as well. We are hoping to be out on Wednesday.

Liz had a really rough day emotionally- angry, sad, frustrated and mean....everything she is allowed to feel. Thankfully, tonight she has been better and is adjusting to the fact that well be here even longer than I thought yesterday.
She is amazing and strong....and so I have no choice but to follow her example.