Changes are Good

Sophia has successfully been on the home vent system for 5 days!!!! They have even lowered/adjusted the settings twice! GO SOPHIA GO! Saturday a doctor came into Sophie room with a group of NPs and started discussing Sophia and then made some alterations to the vent to allow her to breath more comfortably and do more of her own work. After he was done, I asked him what prompted the changes and he said one of the doctors that had previously seem her in the NICU questioned why is she still needing so much support? WOW MY EXACT QUESTION, I have only been asking that same thing for over a week. The doctor started some of his own investigation and then agreed. He said her lungs are good and if the trach is stenting the airway lets work on her settings and she what she can do. Again, he makes no promises, but I am just so glad that someone discovered what I have been trying to say forever. I really think I should just start wearing a badge that says, MOM MD. I bet then someone would listen to me the first time around. We are still working on schedules to arrange the care conference, but I feel more comfortable going into it that perhaps now the doctors and I are on the same page? I also met with another home nursing agency. I think I have it narrowed down. I guess I really won't know who I like working with until they are there and in any case it all depends on the nurses. I hope they send me the kind of nurses I am looking for and someone that fits with my personality because I am guessing my nurses are going to become my new best friends. I am still contemplating some of the really big questions; such as, work, home, moving, cars, etc. All of these BIG questions are centered around Sophie and what will be best for her needs. It also depends too on getting home and establishing a routine and getting comfortable with all of her care without knowing there is a nurse to fall back on. Well, I will have a nurse some of the time because so much of her care requires to trained care givers. Trach changes, baths, going to the doctor, moving her to and from, any kind of travel really; are all two people jobs. Anyway, Sophie is doing great things on the vent. She is tolerating the changes so far and I hope hope hope we keep moving in the forward direction because that would truly mean we would be closer to going home. John and I have almost all of our care training done. Once that is complete and she is stable on the vent and in settings the doctors and Sophie agree on then we can start the home bound count down. I am guessing we still have at least a monthish.