Pain

Kinley got done with surgery around 7pm last night.  Dr.E said it was amazing how much obstruction there was.  As soon as he shrunk the right tonsil, he said he could see the CSF starting to flow into her brain, instead of pulsating along when he first got in there.  He said he could just see her brain lightening up!  What a relief that the surgery went so well!

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.

That smile!

Brightening up our room!

    

Surgery

Sweet Kinley is now back in surgery.  She was originally scheduled for surgery to start at 12:30, but an emergent case came in and bumped her case back.  So it finally started at 2:00pm.  Makes for an extra long day for her since her last meal was last night.
Kinley wanted me to go back to the OR with her.  So I got to gown up and walk with her back there.  Boy was she squeezing my hand!  All day she was telling me she doesn't want surgery.   It was so sad.  When we got back to the room, she started to really panic.  I picked her up and put her on the table, and she refused to let go of my neck.  I was able to keep it together enough to tell her how incredibly much I loved her and would be waiting for her after surgery.  Poor girl was crying right until she fell asleep.  Hopefully I was able to give her some comfort. 
Surgery is supposed to take about 4 hours.  I'm praying she is able to get good rest tonight and we can keep her pain under control.
Thank you for keeping our sweet little girl in your prayers.  She sure is a loved little one!!!