I've been wanting to blog about our recent trip to Shriner's but I really didn't know how to react. I cried for a while and was really upset...so upset I really haven't talked to many people about it. Now I'm ready to tackle this new hurdle just like we have all the other ones....we can do this!
Here's a little history first...
*Kaleb was born with severe foot deformities (shocking...I know)
*his right foot had dislocated bones and was diagnosed with "congenital vertical talus" (CVT)
*his left foot did not have any dislocations but was still very "deformed"
*Kaleb was in serial casting for 6 months to help turn them back the correct way.
*After casting Kaleb had surgery on his right foot where his achilles was cut and a pin was put in through a minor incision to hold bones together. This was when he was 6 months old. This was to fix his CVT.
*he was given ankle braces after the surgery but told to only wear them when he began weight bearing (almost a year later).
*Kaleb had another surgery on both legs to lengthen his tendons to release his feet down.
*since his tendon lengthening his feet have gotten a lot better but his left foot has been the worst so when he stands up or cruises along something he is walking on the inside of his leg/ankle. His right foot (the one with CVT) has been doing pretty well.
So we go to Shriner's for a second opinion on his left foot to see if anything could be done to correct his problem with it. Kaleb had x-rays done and then we met with their Ortho doctor. He showed us the x-ray of his feet and damn...it looked like his x-rays from when he was born. His left foot's bones are actually in line and doing really well (despite our concerns and his PT's concerns). Then we look at the right foot which was supposed to have been repaired when he was 6 months old. He says, "his right foot still has CVT".
I told him, "but that's the foot that he had surgery on". I thought maybe they got the feet switched around on the x-ray..but nope. It was clear as day. His bones in his right foot were all jumbled, like a tangled mess of developing bones. This isn't something that can just be fixed with casting or braces or therapy. It has to be fixed surgically...again. It's not an optional surgery.
I was devastated. As soon as the nurses and doctor left the room I just cried...trying my hardest to keep the tears in because I really hate doctors seeing me break down. I couldn't wait to get in the car because I needed to cry, I had to cry.
Now what do we do? The doctor told us there are two types of surgeries to fix CVT. One of them is new and minimally invasive which is what Kaleb had done at first. This was created by a doctor in St. Louis who is now a pioneer in the world of CVT and travels all around the world to teach other orthos how to do this surgery. The other surgery is a major surgery requiring two large incisions to put all his bones and tendons back together with several pins and around 4 months of being in casts. We agreed to do the surgery and were given paper work so we could get clearance from FIVE of Kaleb's specialists (to allow him to have surgery given his other systems are in good shape).
I left Shriner's planning out my week and how I was going to go to five different doctor's offices and make sure they fax their paperwork back to Shriners, along with planning a birthday party and many other doctor appointments and testing.
Then I posted in a CVT group on FB about what happened. As I was talking with parents on there I found out that our Ortho did not follow the exact steps for this newer minimally invasive surgery. Children are supposed to be put into braces with a bar across for 23 hours a day for up to 2 years. This was never done.
I trusted our Ortho and never researched what he was telling me when Kaleb was 6 months old because I had no reason to not believe him. Why would you follow a new practice but not complete the steps? I also talked with others who's children's first surgery did not work either and most of them traveled to St. Louis to be worked on by the pioneer of this new technique. And to my surprise, he is part of that FB group and he has reached out to me about reviewing Kaleb's x-rays and treating him.
What would that mean? Multiple trips to St. Louis and years with a bar between his feet.
I still have not decided what we will do. I still haven't even given Kaleb's doctors their paperwork for clearance. Either way Kaleb's development will be hurt because of constant casting or bracing. He's been doing so well...standing and cruising along couches and benches.
It's all so scary, my son will be able to walk and now I have to make the best decision to make that as easy as possible for him because...lets be honest...he already has factors working against him in order to walk. If we do the major surgery he will have large incisions and we now know that Kaleb develops larges keloids on his incisions (think of scar tissue bubbling up...that's what it looks like). And he already has these keloids down his stomach and on both of his legs.
What's a mother to do?