Tuesday, August 22, 2006

A Tuesday Update

We got an email today from Kate at the aquarium (one of the fearless laborers from this weekend) expressing her dispair over our lack of postings this weekend:

'128 visits a day x 5 days without an update = 640 moments of d'oh!

We have become dependent on updates.

Sorry to be so needy."

It has been a very long weekend and we cancelled the internet at home in April.

Ellie is doing well. No great progress but she is stillthe silly, happy, little girl who giggles at the nurses, the housekeeper, her mom and I wnenever anyone makes eye contact or pays the least bit of attention to her.

She had her G-tube replaced last Friday with a GJ-tube. The same concept as a G-tube but it gives us access to her stomach
and her small intestine. Very simply it is a tube within a tube and one tube stops in her stomach and one extends through her pyloric sphincter (huh, huh, sphincter....) and into her small bowel. Smae hole in her belly, but she now has a permanent extension tube that cannot be detached and instead of having one port to inject or remove fluids, she has two.

We have been giving her food directly to her bowel since friday. No great change. Same small quantities.

Bummer. But it is what we had expected and we are going to talk with the doctor this week about a new strategy to plan for if the GJ-tube doesn't perform as hoped.

We expect another surgery is in the works but don't know when. Like the earlier surgery, we are getting past the if stage and on to the when stage. We are ready to get the coach in gear no matter what.

Sorry there aren't any pictures of the girl.

1 comment:

beth brogan said...

Let me paint a picture of Ellie this weekend. Laugh, snuggle, smile, squeal, laugh, snuggle, bat the eyelashes, snooze, smile.
Repeat.
There were a few moments when I cringed, expecting a little baby barf, but it didn't happen.
What's really funny is that, when you walk around the hospital with her, every single person looks at her and smiles in a way that you just know is appreciation at just how cute she is. I'm not kidding - they just love her there.
I am in major withdrawal after spending most of two days with her this weekend. In fact, I may just get in the car right now (kidding, just kidding). See you soon.