Wednesday August 24, 11:00 AM
We are out of the PICU!! After all of the tests were complete and they had all of the measurements they needed we began to pack up. One of the cool things at Legacy Emanuel is they have Radio Flyer wagons that the kids use to go on walks and in this case move rooms. They loaded this one up with an oxygen bottle, some pillows, Lilee, and packed all her personal stuff around her. She was pretty apprehensive about getting in the wagon and wanted to be carried but as soon as we started moving things changed and I think she is hooked. Hopefully we will get to hoard this wagon in our room and use it when we want until we leave.
Ahhh, here we are - our new room. Room 3634 with a view of the I-405 bridge and downtown Portland. We also got a full size bed rather than a crib or children's bed. The full size beds are much more comfortable because they can be adjusted to whatever position you need and when she is ready we can lay in the bed next to her. As of now we have no roommate and a bathroom in our room. It will also be easier for Afton to take care of Amelia during the day when I am not here.
Now that we are all settled in and Lilee is getting her energy back some of the things we noticed in the PICU are becoming more pronounced. The main one being her reaction to the nurses. When they come in she begins to whimper and her oxygen stats drop a few percentage points but she still lets them do whatever they need to. She is feeling pain in the places that are not expected and is sensitive to touch especially around the feeding tube. I still can't believe she has not mentioned the giant wound on her chest. She does complain about the Plural Catheters when they are being drained, the blood pressure cuff during a test, and the telemetry wires pulling on the tape attached to her chest. She has basically adopted her JP drain and does not complain about it at all. She has renamed it her "Bubble". A name she has given all her wires are "Ropes". Out of nowhere she will ask - "Where is my bubble?" or "Where are my ropes?"