So we have had a very rough last 2 days... sorry about not posting anything but it's been hectic. Emma had a tough day on Tuesday. She was having her episodes all day, pretty much constant. She would be OK for a few minutes at a time only. She normally has 4-5 a day, she was having 4-5 an hour... She was not being her normal self. I noticed a small area behind her right ear that was hard and red and raised and hot... all signs of inflammation. Showed the nurse and the Doc. They started the workup to see if she has an infection and it looks like she does. We ended up having to go back on the breathing machine. She is still so small and her body can only focus on one thing at a time... if it is fighting an infection she can't focus on breathing too!!! So the issue was not that she wasn't getting enough oxygen, it was that she was not trying to breath at all!
So the news today is that it is an infected and inflamed salivary gland, who knew that was an option!!! She remains on the breathing machine, she is not getting her food in her tube but in her iv, she will be on the antibiotics for 10 days. She continues to fight this infection and has not been her usual feisty self!! On a semi- positive note she is now 3lb 1oz but i think she may loose some weight with all this going on. Please pray the infection will go away and we can get off the breathing machine as soon as possible!