Craziness!!

Craziness; that pretty much sums up my weekend. We were discharged on Wednesday afternoon, yay! I came home to my parents house, again; there is no way to take Noel back to Grand Junction at this point, she has too many follow up appointments and too many new piece's of hardware for me to be comfortable with her so far away from Children's. I'm sorry I haven't had time to update, this is the first time I have sat down at the computer since we left the Hospital. Since we've been home I've been going non-stop, unpacking, organizing, taking care of a toddler who has a vent, trach, g-j tube, broviak-which is hooked up to TPN 22 hours a day... I think you get my drift. As far as Noel's stomach, she isn't making much progress at all. She left the hospital taking about an ounce of pedilite every three hours, I tried adding a tiny bit (7mls) of formula and she did ok at first, but by the next morning she looked really sick again. I haven't been pushing her stomach to much the last few days but she is still retching a lot. Unfortunately we will have to make a trip to Columbus, OH soon to see specialists out there at the Nationwide Children's Hospital, I'm not sure when or how we'll get there but this looks like our only option, I'll let you know more once we hear from her GI doc's.
Other than that I'm just so happy to be out of the hospital. Being in the hospital isn't as hard for me as it use to be; I know a family who just spent over a year in the hospital where their daughter fought and struggled everyday. Knowing them makes being in the hospital for a couple of weeks not such a big deal; it has also taught me to never once take for granted the precious moments we get to spend outside the walls of the hospital. And as it looks right now we may be spending more time there soon, so we'll have to make every moment count!
Tina