Tuesday, November 23, 2010 10:45 PM, CST

Not much change in Elizabeth's status today. They attempted to put her old trach back in (the longer one she was on at home VS. the cuffed one Erlanger used to help ventilate her better) and did a scope to ensure it was what she needed to bypass the compression in her trachea. Her saturations dropped and she was having difficulty so they took it out and put the cuffed one back in. So in order to have a cuff to keep a seal around her trachea and to have a trach long enough to bypass the artery compressing her airway they again had to special order her one. The "hope" is that is will be here tomorrow but the reality is that with a holiday and the last minute ordering it wont be here until Friday/Monday. So until then  I dont think we will see much progress with her, I think she really needs this new trach to ensure her airway is as open as possible for the ventilator/oxygen to do its job. She has been exteremly sleepy and when she is awake she doesnt seem like her happy, playful self. That worries us alot but we know part of it is that she is sick, and part of it is that she cant move alot with the current trach she has, it doesnt allow alot of movement of her neck and makes it almost impossible to sit up. Everytime we try to let her sit her neck is so big it disconnects her ventilator.
Today was a pretty rough day emotionally for Matt and I, we had some issues with the nurses caring for Elizabeth and had to basically get very upset and ultimatley make the nurse mad at us. We then had the pulmonoloist an PICU Dr come in and we were able to talk to them and hopefully resolve some of the concerns we had regarding the lack of care she was being given today. This situation is so stressful and I HATE feeling like we are being ignored when we have concerns and problems with care or staff. I also HATE having to be rude to someone to make them listen to me, but that seems to be the only way to get things done here lately. But I had a bad feeling about this day when I woke up so I kinda knew we were not going to get along with the nurse today.  Hoping tomorrow is a better day, and that Elizabeth gets back to her happy smiling self soon!