So we wont be home Monday! Looks like Tueday now if all goes well this weekend. Apparently there was some "miscommunication" among the Doctors/Nurses in PICU. Apparently someone (I am thinking a nosey nurse from last night who was listening to me talk to a friend on the phone) took our annoyance with our home health company training, as me saying that we were not properly trained on using the home ventilator. So the Doctors were saying that we needed more training, which we have already gotten. So Matt had to explain this to them today and we were not able to start our rooming in until noon, which means it wont end until noon on Monday. So we wont be able to be transported home until Tueday. We had a class on CPR w/a trach today. And found out our home health nursing care was approved through our insurance so that is all set to start on Tueday. We are also hoping to have another swallow study done to see if Elizabeth can start eating baby food, was supposed to get done today but will most likely have to happen on Monday. We are getting our followup appointments scheduled so Elizabeth will be seeing her home pulmonologist next week after we get home and her peditrican Monday of the next week. I am a bit anxious about getting her out and about with all of her equipment, so we will see how that goes. We got her new car seat the other night and ordered her new stroller so it will be at our house and ready for appointments. And then we will be traveling to Nashville every 2 months for an appointment with pulmonary/ENT/GI/cardiology so we will be back here in December and then again January for a followup with neourology. We know Elizabeth still has a long road ahead, but we are very hopeful that we now on the right path for letting her lungs get the support they need and giving her lungs and body time to grow.
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