Second stop was the Pre-Anesthetia Screening. This meant more blood work (we had Henry's official pre-op appointment with the pediatrician and blood work at Cincinnati Children's last week). Henry sat on my lap and whisperer "Ow, ow, ow," but he didn't flinch a muscle in his arm as I held it. He is amazing! The nurse just kept saying she wished all the kids coming through would be so good.
Next we headed over to the Rubin Institute for Advanced Orthopedics (RIAO) to meet with our surgeon, Dr. Standard. We checked in and waited. Then we had x-rays. Garrick had to help hold Henry's foot pointed and his leg turned the correct way. Henry tried, but every time the guy let go, Henry's foot would turn. LOL
Then we moved back to our patient room and waited some more. Henry and his dad got creative. Henry colored a sun picture that decorates our HP room door, and Garrick made this video:
There was also some Spiderman web shooting. I read.
When Dr. Standard walked in, he immediately went into the details of the surgery. First he explained that he had learned through more recent rotationplasty experience that when the patient has FH like Henry whose foot is pronate, that a Super Ankle surgery was also needed. So, the first hour to hour and a half of the surgery Wed. will be spent doing this. Dr. S carefully explained what he would cut and lengthen and how it will all turn Henry's foot and allow it to bend at least 90 degrees. Currently it cannot bend even half that. This will help Henry use his ankle as a knee after the rotationplasty is complete. This answers one of my questions last year in worrying about whether Henry would be able to successfully use his foot in that way as I worried about adding foot ablation.
Next, Dr. Standard explained where he would cut Henry and how this was a change in recent years that has significantly reduced the risk of infection. Yeah! I am praying that Henry does not get any infections. This led to a careful discussion about how we would know if he had an infection and how we would respond to one in Cincinnati. OK, I can handle it. I think.
Then Dr. Standard explained how he would spend at least an hour identifying muscles and ligaments and tendons, and how he would remove one of the muscles to allow the best mobility at the hip. Then he will begin detaching and turning his leg about 180 degrees and reattaching the muscles and tendons and ligaments. He even drew a picture to explain where he would put in screws to fuse the hip and stop the small femur he has from growing further. Though, Dr. S explained in detail, don't ask me to repeat anything more specifically. ;) Finally, after they close the leg, they will put on the spica cast. Dad made sure to put in Henry's request for a red cast. Dr. Standard informed us that the surgery will take between 7 and 12 hours.
Blood loss is one of the biggest risks, and Henry will probably get a blood transfusion during the surgery and possibly another afterward. Dr. Standard explained how that decision would be made.
I then got my random questions answered, such as timeline for post surgery, hints for physical therapy and the prosthesist, and that there are no restrictions for movement in the cast once we get released.
Finally, Chris, the PA who will be assisting us all day Wednesday explained more details about how they will use gas to put Henry under anesthesia, how it will be decided to wean the epidural, and how it will be decided to release Henry from the hospital.
Truthfully, you would think all of these details, the crazy amount of time the surgery will take, and talk about blood loss would make me more nervous. Surprisingly, it made me feel more calm and definitely more confident. If the surgery takes longer, I won't be sitting there nervously wondering if something is wrong (OK, I probably still will, but...), but I will know that Henry's surgeon is taking his time, meticulously moving piece by piece, watching the nerves and blood vessels and carefully considering how it will all work together to make Henry mobile afterward. I have confidence in Dr. Standard and his team. They answered my questions in detail, referring to improvements made that will make Henry's surgery a success.
Five and a half hours after we arrived at the hospital, we headed back to our home-away-from-home. At the Hackerman-Patz House we connected with 2 other PFFD families who had children undergoing lengthening. And the question came up, why rotationplasty?
Rotationplasty is an extreme surgery that has been around since the 1930's and is primarily used as a solution for people who have cancer in the femur. It was later adapted for PFFD patients in 1950 by a doctor named Van Ness. How crazy that something that seems so advanced and modern has been around for 70+ years! The Van Ness Rotationplasty had a high risk of the leg turning back, and only in the last two decades have improvements been made that reduce/eliminate that risk.
For Henry, the rotationplasty would allow us to stabilize the hip given that Henry's PFFD is a class D, with no ball or socket on the left, thus no hip joint. In fusing the leg backwards Henry's natural knee joint will serve as his hip joint with flexion and extension , though limited to no abduction. His ankle joint, also now backwards, will be used as his knee joint. His prosthetic will have a hinge at his ankle to allow a more natural gait.
I think the InMotion magazine produced by the Amputee Coalition gives the best basic explanation of rotationplasty. See the article here. I also got information from pffd.org.
OK, we are going to be Baltimore tourists tomorrow and we are ready for Wednesday, or as ready as ready can be.