Tuesday, August 28, 2007


Just a real quick one to let you know that we are indeed HOME!!! I couldn't be happier about everything that has happened these past few days!!! I don't have time to explain right now - I will update this entry tonight. I just want to say that she is still on ROOM AIR and doing GREAT!!! WOOHOO!!!!

Thank you, thank you, thank you for ALL your encouragement these past two, very crazy, weeks. What a roller coaster! Thank you for hanging in there with us - we are eternally grateful!!!

(More details later...)

10pm - Well, we're still home and everything is going okay so far. Harlie is very happy, and so am I. Although, to tell you the truth, Harlie has been very happy the past couple of days. She smiled at anyone who would glance her way!

Let's see...where to start? Well, her lungs sound great (for Harlie, that is). No wheeziness - which is hard to believe. After a consultation with the GI docs, we decided against the j-tube. My gut tells me that she wasn't aspirating. And the docs really wanted more proof before going into the OR (which I really liked). I think the Pulmicort is what has really helped her. Maybe that in combination with the lung surgery is what has caused the improvement. She has had reflux for so long, if she was aspirating, I think (and the docs, too) that her lungs wouldn't have improved that quickly.

So, we resumed feeding her through her g-tube yesterday. And so far, so good. We will follow-up with Harlie's GI doc here in Richmond this week (no rest for us, we've already got 4 appointments scheduled!).

We also decided to switch her from her fat-free diet to a more "regular" formula. Hopefully the chylothorax has resolved itself and won't come back.

I can't believe she's on room air. I just can't believe it. What a difference it makes for us!

She has lost a little bit of weight (about a half a pound). Which isn't surprising considering for the past few days she's been on only enough feeds to keep her hyrdrated. Just a few hours ago we worked up to her full feeds. So, hopefully if she's working less hard to breathe, and she's back at full feeds, she'll start to pack on the weight!

Well, that's it for now. Thank you again for your support. I know that it must be very hard to know what to say or do when it comes to us. But just knowing that you care makes a world of difference. So, thank you for being there and for reaching out to us. I don't know what we would do without it!

Talk to you soon!

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