10.10.21 ICU 16

We were able to decrease the IV seizure medications that neurology has Aimee on two days ago and she has perked up a bit since then. Unfortunately with a bit of feistiness, she is starting to panic and think she is choking on the breathing tube. Very hard to see and to help her stop fighting it. Today they added an IV drip anxiety med and it is so far decreasing her heart rate and allowing her to be more calm. Still starting getting some eyes here and there thankfully. :) Especially for Ed. She is still and always a daddy’s girl. 

Today Aimee has begun to have a bit of ostomy output. No air yet, so her belly is still full and still has suction pulling out anything from her stomach. But, some progress there is very encouraging and hopeful. We got results from her CT scan, which showed distended bowel loops, but no blockage or abscess. So, time. We have to be patient and wait for function to return. And hope that it fully will. 

The attending did tell us that it is not unusual for bowel and bladder function to start declining as the respiratory system becomes more stressed in kids like Aimee. Essentially, she was telling us what the Neurodevelopmental doctor said a couple weeks ago… their systems get tired after working so hard to live. That is hard to accept and process, but also means we will focus on savoring life with Aimee as long as we can. We want to get her home to have as many happy moments, hopefully happy years, as we can together as a family. 

Speaking of that goal, here is a photo dump reminder of happy moments with Aimee from the past couple of years: