Wednesday, February 21, 2018

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!
    

Tuesday, February 20, 2018

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!!!



Wednesday, February 14, 2018

Skipping




With all the nasty germs floating around these days, we decided to pull Kinley out of school a few days before her surgery.  Our hope is that she stays healthy so we can have surgery on Tuesday.  She can not have any cough in any way, for fear that the CSF will leak after surgery.  So, please stay healthy little one!
So today was spent hanging out at home just playing and giggling with one another!  The girls got to enjoy a spa treatment of getting their finger nails and toe nails painted, and then having a big bubble bath!  They then snuck over to the neighbors to build a snowman in the fresh fallen snow.  And we finished off the day by making a chocolate heart cake to celebrate valentines day.
I have a ton of things to do before we leave for Seattle.  However, today I just enjoyed hanging out with my sweet 5 year old.  Kinley is starting to get nervous about surgery, so we spent a lot of time talking about what will happen when we get to the hospital and how she will feel after surgery. 
You got this Kinley.  So many people are out there praying for you.  XOXO     


Tuesday, February 6, 2018

Our Village


They say it takes a village to raise a child.  Boy are they right.  And boy has our village started to make us feel loved.  The amount of love people have for Kinley is simply amazing.  One of her friends on her last day of gymnastics gave her a panda because she knew she was going to have surgery.  And that same night we came home to beautiful cookies the neighbor had made just special for little Kinley.  The texts I get from everyone encouraging us and saying they are praying for us gives us all so much comfort.  And we feed off of that comfort.  We can do this, because we have so many loved ones standing beside us cheering us on.

Scan

For those of you who are interested, here are some photos of Kinley's MRI.  The big white area you see in her neck and spine is not supposed to be there.  That is all fluid.  And it goes down her whole spine.  We are hopeful after surgery that fluid will start to go back to where it should be and stop pooling up.


Saturday, January 27, 2018

Neurosurgery



This is a hard post for me to write, so its going to be short and to the point.  We took Kinley to Seattle this past week to meet with the neurosurgeon.  He was amazing, and so incredibly kind not only to us, but to Kinley as well.  He said she has the real deal here, and needs surgery.  Tim and I had already done our research on this doctor, so we knew we trusted him to do the surgery.  So while we were there, we got Kinley scheduled for surgery on February 20th.  She had to get a CT done so he knows how thick her skull is for when he places the screws in her skull for positioning during the surgery.  She also had to get lab work done and had her anesthesia consult.


It was a long day at the children's hospital.  We had both girls with us, and they did amazing.  The name of the surgery is Posterior Fossa Decompression with Duraplasty.  Lots of big, scary words.  I'm still in denial that my baby is having brain surgery. I know Kinley is going to be my strength through all this.  She is so strong and such a light.  My tough little trooper!   

MRI #2


Because Chiari 1 was found on the first MRI, the neurosurgeon wanted to make sure a full brain MRI was done before we met with him.  Unfortunately on the first MRI we only got the spine, so back to the hospital for another one we went. 
In true Kinley fashion, she rocked this one yet again.  After she was given some Versed, she kept saying "I just feel so lazy".  Ahhhhh, love that girl!  Thankfully we got all the pictures we needed for now, so no more MRIs for a few months!