Kiera is HOME a little worse for wear

We got Kiera home last week on Wednesday and have been adjusting to life with a ventilator once again. The first two nights home involved at least 3 ventilator alarms in the middle of the night each night. Oddly enough, the transition home has been much more awkward than our first discharge when she was 1.5 years old. For people that have been using the same home healthcare company for 5.5 years, one would think they could get supplies ordered more easily without so many hoops and delays. The nursing agency has no sense of urgency in getting us nursing care, and mostly throws up roadblocks regarding paperwork for services she has been getting continuously for 5.5 years. I get that some things are new, but things like getting new prescriptions for Kiera's albuterol treatments shouldn't be such a huge hassel for them, when Kiera has been on the same Albuterol regimen continuously for 5.5 years and they have those orders on file!!! What did they do? Throw out everything the minute she was re-admitted and incur amnesia? My supply company, has changed their ordering process, and it seems to be taking at least 3 calls to get anything done. My case manager doesn't do much to help, but mostly irritates me. I am so tired of working with bureaucrats who haven't the first clue about patient care. I could do every one of their jobs better than they do it, but I am at their mercy, and they really enjoy asserting their power and pushing people around. Of course, the best part is that each company is pretty much the only game in town, so I can't shop around. The doctor has said Kiera can't go back to school. One doctor said frankly, "If you want her to die, then send her to school." Soooo...we are back to trying to get homebound educational services, but since Kiera uses sign language, services are limited. They only provide 2.5 hours a WEEK with a teacher, and Kiera is prime for learning to read. I love her ASL charter school and am so bummed she won't be able to keep going.