February 1, 2019 "Post-surgical visit"

Talk about Post Traumatic Stress!! 

Just to lay down some background...Rayden has not left our house in three entire weeks. I mean he hasn't even been outside!! Four weeks prior to that, he only left a handful of times just to ride around in the truck to get some air. So for a total of SEVEN weeks this child has not been out of the house except to have surgery. Although Rayden has been through so much prior to this, NOTHING has compared to the pain he endured with this 12th surgery (Hips). Therefore just talking about going back to the doctor made him shake all over and cry. We had to do a lot of coaxing and promising that the doctors would not hurt him just to get him into the van even though I knew he didn't really trust us. I knew this was going to be a very rough appointment!

Normally Rayden does well, but I honestly believe with all my heart that he had some form of post traumatic stress because he absolutely fell apart when we rolled him into the examining room. I mean red face, tears flowing, shaking like a leaf, hands over his mouth, just pitiful!! I don't think I've ever seen him like this before. Alex has always been able to calm him down but not this time! Nothing was working. Even the nurse thought he was having an anxiety attack! I told them just to hurry up and cut the casts off because just waiting for him to calm down was not going to work.

Luckily, when he realized the casts were coming off he calmed down a tiny bet. The nurse even let him 'crack' the casts open with the tool. Another problem arose when he found out they were not throwing them away today. He had to have them wrapped back on to keep the feet in the correct position until he got his AFO's from our orthodist in Wilmington tomorrow. Just too much for a 4 year old to understand!!

This was the first time I had seen his feet since the reconstructive surgery seven weeks ago. The incision goes along the backs of each foot ALMOST ALL THE WAY AROUND!!!!!! It begins at the outside ankle, makes a 'V' shape in the back, and then continues down the inside of the foot half way to his toes! The only part of his foot that wasn't cut was the very front! There were pins sticking out of the tops of his feet that were buried all the way to the bone. It was actually a little shocking to see for the first time.

Ruth pulled the pins straight out the tops of his feet with no resistance. I was so relieved when they just came right out! There was a tiny bit of bleeding from the hole but nothing a bandaid couldn't fix. Alex was trying to distract Rayden and was shocked when I told him they were already out! 

After seeing how great Raydens feet looked, Dr. Vergun wanted to see his hip incisions as well. She thought all seven of his incisions looked phenomenal. She said he was healing beautifully and was very proud of his progress. I told her about the only issue we encountered. While Rayden was still in the hospital she told us that he didn't have to use the abduction pillow. It was mainly for his comfort. So one day this past week after he had gone the entire day without using it, we thought he could sleep without as well. He woke up screaming "My legs hurt!!!" It was horrible. I turned on the light to see that his left leg was turned inward and he couldn't move it back by himself. When I moved it back there was no resistance. It was like picking up jello!! I put his pillow back between his legs and he went back to sleep. Dr. Vergun didn't like the sound of that and was worried that his hip had come out of joint. She ordered an x-ray. Thankfully everything looked perfect! 

She stated that Rayden did not need to use the abduction pillow during the day but to continue using it at night a little while longer for his comfort. Absolutely no weight bearing, walking or crawling, for another three weeks. We can begin GENTLE range of motion/stretching exercises at home. She also wanted us to begin aquatic therapy to build his muscles and ligaments BEFORE allowing him to put weight on his bones in hopes that they will be strong enough to hold the bones in place. After doing aquatic therapy for three weeks she wants to do another x-ray before allowing him to bear weight. This is an extremely lengthy process but in the long run, when you think about the rest of his life...it's not that long at all!

We took Rayden to Wilmington to pick up his AFOs from our awesome orthodist, Bob, on Saturday. Yes, Saturday! Bob is a wonderful man and will meet the needs of his patients wherever, whenever need be! Rayden's post traumatic stress began to kick in when we got there as well but Bob quickly nipped that in the bud. He took Rayden's casts off and threw them across the floor making Rayden laugh. He dropped all fear and began to enjoy his visit. I was relieved to see this. Bob even gave Rayden a present, his very own big boy cup. Rayden's new AFOs are different than he has had before. There is less plastic around his leg and more flexibility. Since he had the surgery to straighten his feet and legs he will not have to use twister cables, therefore Bob adjusted his AFOs to reflect that. The only difference right now is Rayden has to wear his AFOs all the time except to take a bath, even in his sleep.