Thursday, August 13, 2009

Bad and Good

Bad: We arrived all ready to do the lower GI study today but, the contrast from yesterday's study was still in her and hadn't really moved anywhere. Even though we used the special water soluble contrast, it is still in there. This means that she is almost 100% blocked. Dr. Jennings came down and we talked about our options.
  1. Endoscope from below to check out what is going on at the anastomosis, then use a balloon to dilate the connection if possible.
  2. Surgically fix the problem
We choose option number 1. For now. If we can fix this without surgery that would be great. But we will be ready for option number 2.

So for now she is basically NPO (nothing by mouth) and on 100% TPN until we have an appointment for the endoscope.

Good: WE ARE HOME. We get to do all this waiting at home! Ellie gets to hang out in her new bedroom and play in her own playroom. And Gib and I get to sleep in our own beds and have home court advantage when caring for Ellie during this time. Home, when you are home it is a great word, when you are inpatient it is a word we try not to talk about.

I have to go snuggle on the couch and watch Cinderella with my Cinderella.


K8 from CT said...

Aw, man!!! I was hoping the no news is good news train was chugging along. I'm bummed to hear y'all have had some snags and are looking at a similar view. I can't help but notice the very big girl with the very big grin looks very different to me from those days on the lawn at Children's--she's amazingly strong and I have faith this will continue to carry her, and you, and all of us, along. Thinking very good thoughts for you all and looking forward to smoother sailing soon so everyone can come meet Guthrie.

Brenda (Nora's great-aunt) said...

Been hoping that things were going smoothly and I'm so sorry that it's been such a tough, confounding summer. With the diagnosis will come action, though, and she'll start to feel better - then all three of you will feel better. You must be pretty emotionally fatigued at this point, so I'm really glad that you can be home as much as possible right now. Sending healing thoughts Ellie's way - and I'm only one of many, many folks doing that.