Elizabeth has made lots of progress over the past 2 days. On Friday she was the pressure support mode for 11 hours and then Saturday for 12 hours. That means she was basically doing all the work of breathing on her own, just getting a little bit of support and oxygen from the ventilator. They put her back on full support with minimum settings at night to give her a little break. So the hope is maybe tomorrow they will try just doing humidified oxygen with no ventilator during the day. But we will wait and see what they decide to do at rounds. Her sedation was decreased a little today and her feedings were increased, she seems to be tolerating both of those things well. Since most of her meds have been changed over to being given through her feeding tube, they were able to remove the central line that was in her left leg, and hopefully they will be taking the arterial line out of her right leg tonight. And the last 2 chest tubes will hopefully be taken out tomorrow, worst case Monday. But once all of those things are out we can really start working on sitting her up and moving her around more.
Her incision seems to be healing pretty well, it will be a while before all the steri-strips wear off so we can get a really good look at it. The plan for now is still to get us moved out of PICU to PCU (progressive care unit) early next week, maybe Monday. Once we are there Matt and I will start taking over most of her care. Which if you havent learned by now, we are actually looking forward to doing. We have been doing trach care/baths/diaper changes pretty much the whole time we have been here anyway, so the only "new things" will be giving her meds. But we were doing all that before when we were home with her so we dont forsee any issues with taking over :)
We are hoping for a lot of progress over the next few days, the idea of getting out of the hospital is insight. Its an odd feeling to go from waiting everyday to seeing such progress. I cant help but think, when will we have a set back. In the past 16 months, everytime we thought we were on the path for normal something always happened. Its hard not to feel hesitation about things. I want to be super excited about getting out of the hospital and going the apartment, and thinking about HOME possibly in July. But then I remind myself, we thought we were going home MANY times before to only end up right back in the hospital. It will take some time to adjust to all of this.
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