In two weeks, Grayson is going to be having his big orthopedic surgery. Over the past eight months or so, Grayson has pretty much stopped walking. He will go short distances (basically from person to person), but all of the progress that he had made with his walking is gone. He is very unstable on his feet. We have even tried using his walker, but he just doesn’t have the strength to work against his body to safely walk. So, we met with his orthopedic doctor, and he has recommended this surgery. You may also remember how sick Grayson was last fall…we would never have done this surgery if he was still in that place, but we feel like we have “bought more time” with Grayson, so we want to make him comfortable and give him the best chance we can…so we are moving forward with this surgery. His doctor said that anytime Grayson tries to walk, he is working so hard against his body, that he knows it is taking every ounce of energy that he has. We got the OK from his airway team and all of his other doctors.
I’ve tried to explain what they are going to do below, and included some links to sites that explain it too. (These links are not from our hospital, but the information is the same.) Grayson will be in a cast up to just below his knees on both feet, to hold his feet in the correct position to allow his muscles and tendons to heal in the correct position. He will also have a wedge pillow between his legs to hold his hips in a comfortable position as they heal. He will not be allowed to stand for six weeks. After six weeks, we will start intensive PT to help him get back up on his feet. Pain management will be our primary focus the first few days. We will be in the hospital for a minimum of three nights, it could be more. We will not bring Grayson home unless his pain is under control in a way that we can manage it at home with his nurses.
Hamstring Lengthening – This will help Grayson to be able to sit up a little straighter and stand a little straighter. His hamstrings are so spastic that it is causing him to be unable to sit or stand straight. They will cut the tendons in his hamstrings to allow the muscle to stretch out.
Heel Cord Lengthening – Grayson tends to walk on his toes. This is because his calf muscle is so tight. So, the doctor will go in and cut it to allow it to stretch out.
Femoral Osteotomy – Grayson’s hips are out of socket. Essentially, as he has grown, his femur hasn’t grown in the correct shape, so the doctor is going to go in and cut both femurs and put them back into the correct position and use plates and screws to hold them in place.
Guided Growth Plates (Knees) – To allow Grayson’s legs to grow straighter, the doctor is going to make an incision at his knees and insert a plate at his growth plates, which will hold that side in place and as he grows, the back part will grow, making his leg straighter. He will have these plates for about two years, and then they will go in and remove them.
Thank you for joining us on this journey and cheering for Grayson! We are hopeful that this surgery is just what he needs to get him mobile again.
Journeys with Grayson 