Monday, August 27, 2007


Well, things are going I guess. Harlie went several days without throwing up. It was nice. But then yesterday she threw up 3 times. Bad sign.

The nurse did a test to see if the tube is in the stomach instead of the intestines and it looks like it is (it's supposed to be in the small intestines). I guess they'll need an x-ray to confirm it. So, I don't know what the plan will be. If they tell me that she needs to have the n-j tube placed again, I will scream. That was terrible and I don't know that I can let her go through that again. They tell me that it usually only takes 2 minutes but I know that wasn't the case with her.

The GI docs are supposed to come and talk to me now that they are going to have to play more of a role. The number of docs that I've had to talk to is really quite staggering. Hopefully they can get her in the OR soon to place the G-J tube. Prior to yesterday's vomitting, everyone was really happy with how Harlie's lungs sounded. And she was on ROOM AIR all day yesterday. (the first time since that one glorious week in March).

We had to put her on O2 during the night (her sats were staying in the low 70's) but, I'm completely fine with that. This morning, she's back on room air, and doing just fine. I had no idea that her lungs could turn around so quickly! Hopefully that's a very good sign that there wasn't THAT much damage and that once we get this reflux under control, we'll be okay. With the j-tube, we'll have to keep her on 24-hour continuous feeds - but that certainly beats lugging around the oxygen tank. I'll know more about how long to expect to have the j-tube once I speak with the GI docs. I have lots of questions for them.

They mentioned wanting to get some lung study done on her but they don't have the capabilities here. So that would have to be done at Johns Hopkins - but hopefully we can wait on that. I just want to get her home and let her be a baby for a little while. I was really hoping they could get everything done by tomorrow.

We decided to move Murphy into a different preschool program that is right across the street from our house. We really think he's going to love all that they have to offer. And we are going to love the convenience of it. Well, their back to school night is tomorrow night and I really want to go. (He starts on September 4th.) Well, that's about it for now. Thanks for all your support!

Take care,

No comments: