Well we tried going to 70 on the feeds Monday night but she puked. We turned them down to 40 and she still puked, so we turned them off altogether until Tuesday morning. Tuesday she only puked once and it was when she was needing her DDAVP and drinking a lot. That seems to be when it happens a lot of the time. They also started her on TPN last night and I kept the feeds at 30 overnight and she did rely well with no puking ;) she did wake a lot and need to pee and was uncomfortable. She got some lortab this morning and is happy and chatty. We will keep the feeds at 60 in the day and 30 at night along with the TPN. We will discharged Friday morning and go to the MCDonald house for two nights and be admitted for week 2 on Sunday. Theu are going to send some TPN with me for the weekend also. Friday we plan to do something fun like a pedi or a movie. Saturday there is a neuroblastoma walk that we will go to for the fun stuff, face painting, games and food! I had heard about the walk a few months ago but didn't plan on being there so I forgot all about it. Now with the change in schedule, it turns out we were down here for it after all. This is the 4th year they are doing it and all proceeds go to Cook Childrens hospital.
Cooks also just opened a build a bear in the hospital. It is the very first build a bear in a hospital setting and they have medical related themed outfits as well as regular ones and the prices are the same as other build a bears. All proceeds go to the hospital and every time we are admitted she gets a ten dollar coupon. So next week she will get another one nd be at 20 bucks off already. She is looking forward to it!