After we got Kinley settled into her room, the pain began. They like to stay away from narcotics with these kids so her bowels continue to move how they should. If she were to strain for a bowel movement, it could cause the durapatch to leak, which would be a bad situation. Unfortunately on top of the pain, Kinley started to throw up also. It was so hard looking into her eyes knowing how incredibly miserable she was. Needless to say, we kept her nurse busy last night. Every 10 minutes she was in the room helping us figure out our next game plan. I am so incredibly thankful for Tim being there to help push ideas and get her the pain control she needed. At one point Kinley asked me to sleep with her. I jumped right in that bed, anything to snuggle my little lady! She would hold my hand and just wimpier. It was miserable.
After the sun came up, Kinley was still feeling horrible. She would wrap her arms around my neck and snuggle me cheek to cheek while crying. We finally were able to get her some morphine on board, which is seeming to help.
Kinley has had lots of love sent up to her room today. It is magical seeing her eyes light up for a few moments when they deliver a package with balloons attached. Sometimes she could not stay awake long enough to open the gift, so she got to enjoy the excitement all over again when she woke! Thank you all for your love today. It helped us get through some really rough moments. Hopefully tonight we will be able to keep her pain under control and she will be able to get some good rest.
The prayer bear that sat at Carters bed when he had his Mandibular Distraction. And Fairy Lights my Dad made her.
Brightening up our room!