Yesterday, Kylie had her central line taken out at the Children's pediatric surgery clinic. We made the decision to have her come home with it in just in case she wasn't eating or drinking well. However, her appetite has been so great. Her strength continues to improve and with that she makes things a lot busier. Now that she is walking all on her own (although a little tipsy), I have to watch her like a hawk. I have to be sure she's not tearing ornaments off the tree and throwing pieces to the nativity, among other things! I still can't believe this is our Kylie. It is so weird! It's as if I have a child that has never been trained or disciplined in her life. I am trying really hard not to get too discouraged about it, but it is getting harder. I just want my little girl back.
Our pediatric surgeon has decided he would like us to travel to the Nationwide Children's Hospital in Columbus, Ohio for Kylie's motility testing. They would like her large intestine to heal for six to nine months. So, we anticipate that we will make the trip next summer. The doctor we will be seeing is Dr. Carlo DiLorenzo, a world expert in GI motility. People travel from all over the world to get help from him. Ultimately, Kylie will have to have a second surgery. However, the type of surgery she has will be based upon the results of the motility testing. It could be that they will have to remove her entire large intestine or just part of it, we'll have to wait and see.
It has been so fun to have Carson home. Kaycee took Monday and Tuesday off of work, so we had some good times as a family. Today, Carson went back to school for the first time in weeks. It will also be his last day before Christmas break. We thought he would have fun seeing all of his friends one last time before Christmas. He absolutely loves school and his teacher has been so supportive through Kylie's illness.
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5 comments:
So glad to hear your are home. Glad to hear that little Kylie is up and moving. Have patience time will help get everything back the way it use to be. God bless!
Susie McWhirter & Family (Angies Sister)
We are so happy that you all are home now. Please let us know what we can do for you. Meals, housework, errands, etc...whatever you need. We want to help if we can. We are still praying for continued healing and recovery. Love, Chad, Roberta and boys
I had tears in my eyes when I read you were all home. Praise God! We will pray for God's continued healing in Kylie.
S&K Carlson
Jill and Kaycee,
So sorry for your continued pain!! I know you are grateful, but this has to be so hard too!! Steroids, ICU, and sleep deprivation are all known to cause behavior changes...plus everything else. Praying for swift return of your sweet Kylie's personality!!
with love, wilma s
Your spirit is faithful and I am so thankful. Though the times are still tough you still proceed with great faith. May God show you steady steps to a fully healthy little Kylie. I pray for emotional and physical health and the strength to see little is much when God is in it.
Continues prayers,
LuAnn
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