Week One in Review

Monday: Kadence had her surgery at about 8:00 am and was back in the room by 9 ish. She was pretty unhappy due to the pain and the codeine based pain meds. Once she threw up she announced that she was ready to get out of bed and was down to the cafeteria for lunch. According to hospital staff it is very unusual for patients to be out of bed the first day.

Tuesday: The big event was the walker. Once Kadence mastered the walker, she was not to be stopped. We spent a lot of time walking the hospital and the grounds. She also got to decorate her halo and that of her American doll – also with halo attached.

Wednesday: Was a big “information” day. Kadence continues to get more and more mobile. We spent a good part of the day putting together a work area for her by the window (great view of the city). We also had a meeting with her entire care team which includes nurses, therapists, social workers and numerous others who are here to contribute to her success. They are awesome!

We also learned on Wedesday from Walter and Dr. Heflin that her rod surgery will be postponed by two weeks. Dr. Heflin said that he wants her to be up to full weight for about 4 weeks before placing the rods and because they add 1-2 pounds per day, it takes up to two weeks to get the full load of 18-20 pounds. We also learned that when the insert the rods the make an incision at her pelvis area and at the top of her ribs. The rods are then “threaded” through the soft tissue – attached to the pelvic bone and hooked over the top ribs. This is why it is so important to get all the benefit of the halo – to straighten her spine as much as possible before placement of the magic rods. While we were a bit thrown by the change in schedule we are confident in the expertise of the staff here and, more importantly, in the hand of God working through all things. One final bit of information we received was that in addition to the bi-monthly trips to adjust the magic rods, we will be back here to replace rods to accommodate her growth…. like we said, lots of information to process.

Thursday: Big event was her first shower since Monday morning. Who doesn’t love that feeling! Learning to clean the posts on halo and putting together a daily schedule to help Mimi when Mom leaves for two weeks. We also rearranged travel and lodging to accommodate new surgery schedule… All is in order.

Friday: Friday was a sad day as Mom had to leave to go back to Mesa. We were all sad to see her go but she is happy to see Daddy and Jayden. Now Mimi will be the main source of entertainment. Thank goodness for the hospital staff who have provided Kadence with lots of activities. Weight is up to eight pounds… with goal of 18 -20. Dr. Heflin says that she is right on track.

With the help of the staff, Kadence has a countdown calendar allowing her to track the time of Mom visits and rod surgery. She also has a gallery of all her family and pets so everyone who enters gets an introduction to all

Saturday and Sunday: The weekends are very boring around here as Kadence is the only patient in the hospital with the exception of a couple of families in the international family section. The staff is so accommodating but we are really thankful for technology as Kadence spent the afternoons on FB Messenger with her cousin and family. Today the nurse played board games with Kadence while Mimi made a run to Target to get some shirts for Kadence. She is up to nine pounds on the weight – nearly half-way to goal.

NOTE: If you would like to receive updates by email as we post, please subscribe to our blog (link to the right of this page) and feel free to share with trustworthy friends.