11.23.21 Trach Floor 28

What a roller coaster! Yesterday evening Aimee was so agitated. She was vomiting and crying. We lowered her feed rate. This morning her NG output was bloody and she was still so uncomfortable. We turned her rate down even further. 

This afternoon she went into the IR for a routine GJ tube change. It did not go well. It turned out that her tube was curled up inside her intestine. Instead of a simple replacement they had to redo it. When they went to redo it, they found that one of the bends in her intestine was too tight of a corner for the tube. It continued to curl back. After several attempts they were able to get it in, but they are not sure it will stay. :/ 

The good news is that she is more comfortable tonight after that change and the bleeding stopped. We are slowly working our way back up to where we were yesterday on her feeds to see if she will tolerate them better now. 

I do have other great news though. I spoke with the nutritionist this morning, Aimee’s bloodwork is finally stabilizing. In particular her calcium levels have been difficult to manage. She is on very high levels in her TPN and also on a dose 3 times a day enterally. This was the first test on the low end of normal since we got here. Also, her inflammation markers that showed her pancreatitis when we got here are for the first time on the high end of normal! Good progress! 

Ed’s doing a great job at home teaching the kids. I love that they get this time with him. His skills and gifts are much different than mine and they really benefit from the combination I think.