We met with Dr. Anna Vergun today. She said she has definitely done her research on Rayden. She has consulted with a ton of surgeons about him this past year. She very recently spoke with Jim Wright from Toronto while in Palestine. She said he is one of the leading publishers on Spina Bifida kids. They looked at his x-rays and talked about him a lot. He said in certain kids it still makes sense to do the hip surgery despite the fact that there are recent publications against it. He said if the patient has really good ambulatory potential and a clear hip problem then it will still be beneficial. All we have at this point is expert advise and she really trusts him the most. He said to do it. They believe the probability rate of success for him is extremely high. She ignores the hip issues in most spina bifida kids but she hasn't had a good feeling about ignoring it with Rayden. She, and
everyone else she consulted, feel that since he has such strong cuadricep muscles they will be able to hold the correction in place so he can walk for decades instead of becoming wheelchair dependent due to arthritis pain. Hip dysplasia even causes pain when transferring into the wheel chair. NO child as young as Rayden with hip dysplasia has pain, that develops when he gets older. Hip dysplasia has to do with pressures inside the joint and when he walks without coverage it will be putting a tremendous amount of pressure on a small surface area and that turns into arthritis very quickly. This is the pain we are trying to prevent.
There are 3 proposed surgeries at once. They are called
Femoral Osteotomy,
Pelvic Acetabular Osteotomy, and
Bilateral Clubfoot Release. These surgeries will take over six hours combined. Even through Rayden has already had 10 surgeries, he has never been put to sleep for more then 2 1/2 hours. Six hours is an extremely long time!
Femoral Osteotomy: This procedure will be done on both legs. They will make two incisions on both sides. Then cut the femur (thigh bone) and point it more inward so that the head of the femur goes right into the middle of the socket not up and out. Then they will re-attach the bones with a plate that will hold the bone into an 'L' position. One part of the 'L' goes in the femoral head and the other part sits on the outside of the bone. Hopefully the hips would then start to grow CURVING around the joints instead of going upward like it is right now. This surgery will make the legs shorter by about a centimeter but she will make sure they are both the same length. The plate will have to be removed a year later to prevent femoral fractures. The legs will continue to grow but the hardware will not so it may cause the bone to shatter years later.
Pelvic Acetabular Osteotomy: He needs a pelvic osteotomy on the left but not the right. The cup on the left side is so steep that it's not going to remodel and come down enough so she is going to do the pelvic on it as well. He will have a separate incision in the bikini line where she cuts the bone just above the cup and fold the lip down. She will then use some of his own bone to fill in the space remaining after she reshapes it.
Bilateral Clubfoot Release: Dr. Vergun said she will make an incision in the feet that go all the way around. She will take all joint capsules away from bones releasing the capsules. All the ways that the bones are joined will be taken apart and put together the way she wants them. She will place pins in his feet to hold the bone in the correct position. These pins will be sticking OUT of his feet and casts. They will be removed in six weeks. She said she will not fuse the joints but she may need to scoop out some of the bones on the inside to make a bone smaller so it comes over better. His fibula bone is so far back behind the foot that she may need to use more bone from other places to make the correction work. The feet will take the longest amount of time to correct during the surgery. Dr. Vergun believes this correction will prevent the clubbed feet from relapsing for a very long time. She says he may want a tweaking of the feet when he is older but nothing expected sooner.
Michael and I are so worried about his pain. I know he cannot feel his feet but he can feel the muscles surrounding his hips. She says that while he is asleep the anesthesiologist will watch his heart rate and tell her how much pain he is in. That way she will know what to expect post op. Most people get an epidural for this surgery but that will not work on Rayden because of the spina bifida but she will have a pain team on board as well. The hospital stay is dependent upon his pain tolerance. He may go home the next day or, if he is in a lot of pain, it may be as much as five days.
Upon release: Rayden will be coming home in short leg casts instead of the spica cast. She doesn't feel that she needs to protect the hip surgery on him with a cast. He cannot bear ANY weight on his feet or hips for six weeks. We have to be extra careful not to hit the pins sticking out of his feet so we don't mess up the correction. Therefore, she doesn't want him to go to school, or anywhere actually, to be on the safe side. This may also prevent his exposure to infection. She doesn't think it will take him long to get back to walking once his feet and hips have healed. A surprising twist is that she believes this surgery will allow him to walk WITHOUT THE TWISTER CABLES!
Of course this is a TREMENDOUS amount of work to do on a three year old child. It reminds me of the bionic man, "We can rebuild him." Yes, we are happy with Rayden just the way he is, but if God gave these surgeons the knowledge to correct his deformities I feel like we must take advantage of that to make his future as bright as we can.
Rayden's urologist wanted to get a renal ultrasound BEFORE surgery because it would be quite a while before he would allow someone to be poking on his abdomen after surgery. So we checked into Ronald McDonald House yesterday afternoon before the appointment. I tried to make the best of our afternoon by playing with everything there. He certainly seemed to enjoy himself. He even made a new little friend, JD. But I believe his most favorite part was that he "had the power" wrapped around his neck to open all the doors. 
When they finally took us back to pre-op Rayden knew something was wrong. He didn't want to change his clothes or weigh. He didn't want anyone touching him. The pain team were the first people to come into the room. They immediately started talking about placing an epidural. I was shocked by this because Dr. Vergun had mentioned he couldn't have one because of his Spina Bifida. They continued talking about it and asked a few more questions. Somehow I mentioned that he was sick last week with an upper respiratory thing with fever and was on antibiotics, tylenol and motrin. They quickly looked at each other and said they had to go get the head anesthesiologist. I knew something was wrong. When he came in he listened to Rayden's chest and lungs. Even though he didn't hear anything he didn't feel comfortable with going on with the surgery but he needed to consult with Dr. Vergun.
She came in and explained that they were worried about losing his airway! She stated that any lingering respiratory issues could cause more swelling preventing them from taking the breathing tube out after it had been in for more than six hours. This could cause death or an ICU stay at best!! She explained that it certainly wasn't worth losing his life and we agreed!!! We postponed the surgery until December 13. 
