10.16.21 ICU 25

I got to spend last night and this morning at home with the younger 4 kids. It felt good to be home. Came home to a surprise package from a friend from afar with books and tea and activities. It was just so sweet for the kids to feel special and loved. Being home in a little bit of normal routine is such a blessing. 

Today the team turned off Aimee’s pain drip. They are leaving the anxiety/sedation at about half for now. We wanted to focus on cutting back on the medications that interfere with GI function. At this point, the ng is still to suction and it is pulling ALOT of fluid from her stomach, which means her small intestine still isn’t moving. Her ostomy has next to no output and she is still on TPN with IV meds. The first goal will be to have more ostomy output so that we can turn off the suction. 

Ed met with Pulmonary a couple of times, PT, General Surgery a couple of times, and Urology while I was gone. Long and short of it, we will be in the ICU for awhile still before we can move to the trach vent floor. She needs to be more stable before she can be released from the ICU. They will not be comfortable with us moving until she is successfully proven on a portable ventilator and until she has made significant progress towards enteral nutrition. She won’t be put on a portable ventilator until she is weaned off of sedation meds and makes progress with her gut. She can’t make progress with her gut until we get her off of the big pain meds. Phew. 

Overall Aimee is much more comfortable with the new trach size. She is still having some panicked events, still having neurological symptoms of distress, but they are decreasing. She is fighting a lot of secretions and oxygen saturation issues as she adjusts to less pain meds. It is a tricky transition. 

Now that the kids will be back home, Ed and I will be rotating schedules between home and hospital. Thank you to each person for your support through this past 2 weeks. Thank you to each friend who has sent us room service gift cards. Thank you for each message and email and comment. Thank you so much to our many different family members who have helped or plan to help with the younger 4 kids. That is the biggest deal to have them feel safe and loved through all of this. Thank you to each of you for loving on us in your different ways. You have helped us to carry forward and to focus on advocating for Aimee. Thank you for being on Aimee’s team. Please continue to pray that she would stabilize and make significant progress towards healing.