March 29, 2016 "Duke-3rd Opinion"

I don't like to say negative things so I'll just simply say that we were NOT IMPRESSED with our visit to Duke today. The doctor sent in a student first that examined Rayden's feet a little but basically that's all. We are used to that so it didn't really bother us. Dr. Fitch came in and immediately asked if Rayden could walk or stand. Rayden stood against the examining table and the doctor saw how his feet turned in. We started telling him that Rayden had spina bifida and that we had fetal surgery. He immediately got intrigued. He said that he forgot they were doing fetal surgeries at UNC. He asked how I got along with that and several other questions pertaining to the surgery. He wanted to see Rayden's back! (He's an orthopaedic. Why did he want to see his back??) He even asked if he had long leg casts (as if they casted babies any differently!). He never touched his feet!!! When I mentioned that UNC wants to do the Achilles tendon removal surgery he just backed up and said "Yes, I think that's what he needs." We had to lead the entire conversation, which I'm not used to. He never asked us any questions. He seemed to be a little lost with the whole conversation. His answers were short with no explanation at all. (Not like most doctors!) We told him a little about the Shriner's visit and he disagreed with the bowing and thought it was due to having so many casts. He thought it would resolve itself when Rayden started walking. He also agreed that we would have a much better outcome if we cut the Achilles tendon out instead of lengthening it. I asked if this surgery would damper any chances of him being able to feel his feet and he quickly said "No." He assured me that they don't remove any nerves so if he has any sensation then the foot surgery will not cause any deterioration of that.

After three of the exact same opinions we have decided to go ahead with the surgery and scheduled it for May 19. Rayden will be casted two weeks prior to surgery and will remain in casts an addition 4 to 6 weeks after surgery.

March 20-21, 2016 "Shriner's-2nd opinion"

We arrived at the Shriners Hospital Sunday night around 6pm. We had the remainder of the evening to settle into the complimentary room and explore. We were absolutely amazed with the facility. Everywhere we looked there were fun and exciting things for children to play with and enjoy. There was even an iPad on the wall in the room!! Rayden enjoyed the Little Tykes car the best. He immediately started turning the steering wheel and making car sounds with his mouth. (How did he know to do that?) He amazingly slept through the night and enjoyed breakfast in the cafeteria Monday morning before his appointments.

We met the first doctor directly after x-rays. He immediately noticed Rayden had significant anterolateral bowing of both tibia's. He also mentioned that his knees do not fully extend but thought that could be an illusion because the bowing is so bad. After he found out that there was no real plan at UNC for the bowing he seemed upset and stated that it definitely needs to be addressed. He thought it was best for us to see their pediatric orthopaedic that specializes in spina bifida, Dr. Peter Stasikelis.

After examining Rayden, Dr. Stasikelis stated that in people with spina bifida the muscles and tendon's end up serving as ligaments that hold the foot in the deformed position. "They never serve a useful function just an EVIL one." He stated that all the doctors around the country agree the only thing to do is find the tendon and cut it out so it won't grow back. He says its probably by far the most common operation in spina bifida that they do. He stated how much he admired UNC's patience with Rayden's feet (14 sets of casts) because he would have cut the tendon's a long time ago! He said it's a fairly straight forward procedure and thankfully Rayden won't feel much discomfort because of his paralysis. He would also recommend cutting his posterior tibial tendons and several other tendons in and around the ankle as well. He also reminded us that we should probably have UNC x-ray the bowing of the legs. He doesn't think it represents the usual bad things because in SB strange things can happen but it definitely needs to be addressed. He also wanted me to tell them that the position of the ankle seems to be a little down/posterior and they will want to adjust for that as well. He said Rayden's feet are really too severe to even go into the AFO's that he is currently wearing so he would chalk this up to a "no brainer!" Rayden clearly needs this surgery or he will not be able to walk.

He continued by saying Rayden will probably be in braces forever more after the surgery. He feels that his quadriceps are "iffy". He doesn't have much in the line of hamstring muscles and no motor function in his feet at all. He says Rayden will need the braces to provide stability under him in order to walk and arm crutches to help support his weight. He doesn't feel that Rayden will ever be able to walk without the help of braces.

Of course he had to add his spill on the future as well... He thought it was important that we know the future so we don't experience a "second loss." Generally when kids turn 10 or 11 years old they will not be able to support the weight of their bodies because their body weight is increasing to full man weight but their muscles are NOT. It will become harder and harder for him and he says Rayden will want to keep up with his peers so he will choose to go into a wheelchair. He didn't want us to blame ourselves when this happens or feel like we did something wrong. (I know he meant well but that's not what I drove 5 hours to hear. It's not like we are going to love him any less. NO, I didn't want to hear that, but ultimately we will accept whatever plan God has in store for Rayden's life.)

We have an appointment with Duke next week for a 3rd opinion.