Slow and Steady Wins the Race

Momma Kati here again with the latest update on Kayleigh. It's been a long week for sure! On Tuesday, Kayleigh was doing well considering what her body had been through, not just with the surgery but the last ten years. Thanks to finding some awesome caregivers, she was as prepared as she could be for this surgery....however, Thursday proved to be a different story all together. Kayleigh became very sore, swollen, tired, dizzy, and she suffered from some pretty awful headaches and double vision. Her blood pressure was consistently low and her heart rate was high. Three different times she had stat emergencies where the charge nurse, doctors and other floor nurses were  in her room monitoring her. There was even a threat to put her in ICU.  She was not in a state of cooperation. It was very frustrating and difficult for everyone who was watching see her suffer. We all wanted this to be the "miracle" she needed to feel better but she was sliding into a very dark place instead.

When her dad left Gainesville on Thursday morning to go back to Fort Mill things were looking promising, but by the time my parents got here that evening, she had taken a step backwards. The doctors changed some meds around a few times and kept promising us that her bloodwork looked good but it was hard to stay focused on the light at the end of the tunnel, especially for me. If you started reading this blog from the beginning, you know that Kayleigh had surgery when she was 14. She was very malnourished and the re-sectioning leaked and became abscessed. She was a very sick little girl. The memories of that 7 week nightmare were coming back with a vengeance. I knew I had to straighten up and become the strength she needed to get through this. I went on a walk around the University of Florida campus, had a good cry and came back with a refreshed outlook. Kayleigh needed to be surrounded by positivity so I forced myself to have an attitude adjustment. Enough about me though, this blog is about Kayleigh's adventures.......

Saturday night Kayleigh had a new nurse named Jenn. Jenn came into her room and the first thing she noticed was the room was hot. We knew the room was hot but figured it was because it was in the 90s outside. Kayleigh was miserable and complained to anyone who would listen. I was constantly going to the kitchen to make ice packs with medical gloves to put on her head and behind her neck. Jenn called maintenance and within 30 minutes it was 65 degrees inside the room. She also finally started getting some relief from the headaches with Fioricet.  I decided Saturday night that "Slow and Steady Wins the Race" would be our new motto.

On Sunday morning the doctors came for a visit. Kayleigh's bloodwork still looked good and her temperature was normal. Both would indicate infection if the numbers were off. She also had a pretty good night of sleep despite all the normal hospital interruptions. Dr. Brad decided to take the wound vac off and the extra IV site was taken out. This meant that during the day she would not have any leads connected to her!!!! She would still be on TPN at night through her port.

The incision site looks really good. The surgeon cut through an old scar, so she does not have any extra battle wounds. She also worked with a PT today. He walked her around the hall and they talked "Therapy Talk". He was a cheerleader for the University of Florida and coincidentally, has a sister who teaches in the Fort Mill School District where I teach. What a small world!
Her day nurse, Tonya, found out Kayleigh has Celiac Disease. Her 6 year old daughter was just diagnosed Friday and she had a lot of questions. Kayleigh hooked her up with a couple great apps and this blog, so if you are reading this Tonya, "Welcome, and good luck with your daughter!" Even in the hospital, my child is helping others.

I decided to stay another week and my mom, Mamaw Connie, will come back down next weekend to relieve me. Hopefully, they'll kick us out of this place mid week. Kayleigh is very thankful for all your thoughts and prayers. We all know that this adventure is all apart of God's plan for her. We have learned that His plan involves patience and trust, something we did not  have in the beginning of the week. My cousin, Leigh Anne, reminded me that "if we stay in an attitude of faith and victory, God has promised to turn any emotional winds around. He'll use them to our advantage, and we will come out better than we would have if this had not happened to us at all." Slow and Steady Wins the Race my friends. Until we meet again......