Update

It is hard to believe we have only been here since Tuesday. I am already sick-tired from lack of sleep, tears from missing my babies at home are harder to keep from coming than they were just two days ago, and even Liz's IV had to be changed today- a sure sign that the days are passing.

Feeling sad about our time here was made a little more difficult by conversations with doctors today. Our Pediatrician let me know that from all the physician's notes, the plan for Liz is uncertain and ever-changing, which to me let me know that we may be here longer than expected. Then, Dr. Steinmetz- the GI covering Liz's care for a while- talked seriously with me about the need for us all to be patient (even the doctors) while they all try to determine the reason for Liz's "severe failure to thrive"....in easy terms=the reason she cannot grow anywhere close to how she should and why her body is so malnourished. We definitely are going to be here longer than we thought. In fact, Liz has lost weight and not gaining yet during this stay.
For the first time ever, a G-tube is being talked about as a possibility ( a tube inserted through an abdominal incision, into the stomach for long term nutrition). Ugh! This is another one of those things that in my mind through the years I have always thought of as "at least Liz doesn't have a G tube!"
It would not be the worst thing ever, but it is something I don't want to do unless we have no other choice.
The PICC line is still on the table, but after the doctors had a meeting, it now sounds like it will be a PICC for TPN or a G-Tube and they want to decide what the reason for the weight issue is so that they know which option is best.
I think some of you may have the impression that I am scared of a PICC. I am not afraid of the line itself (though who wants that for their child?!), but I am absolutely afraid of the risk of infection that comes with a PICC line. Remember, if Liz gets an infection, which can easily happen with PICC lines, she would need an antibiotic, and then, almost assuredly, she would have the CDifficile flare up. ALL the doctors are afraid of this for her, in fact.

We are in a wait-and-see...what else is new?! She still has the NG tube in (her nose, down to her tummy) and is getting formula feeding through that from 10:00pm-4:00am. We will hope for a weight gain and to see how her stomach tolerates having the higher volume in it. Last night she got very nauseous about 45 minutes after the feed started, and we are wondering if it was a sign that her stomach cannot handle that much. A key bit of information and treatment plan factor is if the nausea was truly from the feed. We'll see how she tolerates tonight's tube feed.

I am praying for an uneventful night. Last night was another loooong night. Liz was nauseous; the iv fluids make her pee endlessly it feels so we are back and forth to the bathroom; and when I finally got her settled in for sleep, she had stomach contents come up and out of her tube and it got all over her and in her hair, so I had to bathe her. We didn't even get into bed again until 12:30am.
So looking forward to sweet sleep.

A bright spot in the day was a chance for Liz to mask-up and go to out to the garden for some fresh air and sun. We were like two cats, soaking in the rays and the breeze. Such a nice break.

There have been other bright spots too.....

Like..... music therapy with the amazing Laurel. Even with an IV and board on her strumming hand, Liz practiced and had her first smiles of the day. Laurel is F-U-N!

After Liz got sick last night, our nurse- knowing how much likes Nurse John- called him and he came in on his day of (!!!) to do magic for her. She requests John during each hospitalization and she gets joy from his magic shows and his kindness.

"Are you ready for the trick, Lizzie?" Already in giggles!

Tutti Fruitti was the magic word.....

Liz's look of amazement. John was a wonderful distraction.

               Here's to a better night. I will write more tomorrow about what the doctors suspect may be the primary issue of Liz's weight/nourishment problem. Please know how much I appreciate prayer for my sweet Liz....and please keep praying.