We've had a very long day of waiting around. During that time Eve was able to check in on her classroom via FaceTime.  It was so fun to see and hear her teachers and classmates. Technology is amazing.

Also, I want to thank all of you for the kind wishes and offers of help. I feel so fortunate. We were supposed to be in Boston  today for Eve's urodynamic testing, so my mom is visiting to help with Seamus.  What amazing luck that the day she came up to help was the day we were sent to the hospital.

So, it looks like we will be here for the rest of the week. They don't have a low profile gj tube that fits her, and that would take several days to get in (during which time we would need to figure something else out like a n-j tube). Instead of waiting, they are doing a non low profile tube. I'm not exactly sure what that will look like. When she gets the tube in, she will be running on continuous feeds around the clock. If all goes well, we are hoping to have the tube placed tomorrow and to be able to go home Friday. Otherwise, they will place it Friday and we'll go home Saturday.  That of course assumes that the placement  goes well and the tube works for Eve.

The dr has also ordered food for her though the gtube tonight until midnight. They'll start very very slow just to get something in her.  They will stop at midnight to be prepared for the possible placement of the tube tomorrow. But at least she'll get a little bit of something. It's been 42 hours at this point since she last had something.

The neurologist also stopped by today.  It was so great to see him because he was just checking in on her. He examined her and spent time talking with me. He confirmed that this is a very serious time for Eve.  The shutting down of her GI system is scary stuff.

On a happy note, I heard today that we were approved for the loan for the wheelchair van. Once we figure out what's going on with Eve we'll move on to that.