What happened next has so totally and completely unnerved us -- Jack's left hip is dislocated. Not 25% or even 75% subluxed, but 100% dislocated. His hip was fine on his last x-ray. We knew, in passing, that hips are a concern for kids with cerebral palsy, but on the list of things that we worry about, or that can go awry with Jack and his complicated medical make-up, his hip has always been pretty far down on the list for us. Just a total curveball.
The doctor placed the x-ray up in the room and said "I'm so sorry, but it's completely out." It was one of those moments where the wind was completely knocked out of me and I had to do everything to just focus on what he was saying. Tears came. Just sadness at everything Jack has had to go through in his life and now this, a "beast" of a surgery with a hefty recovery time. Of course there is no other option because without surgery, Jack would eventually lose his ability to walk.
When? November 16th. We picked November for a number of reasons. First, our doctor recommended waiting for cold weather because it will be more comfortable for the body cast. Second, November is the only time that works for us as a family this fall. The timing couldn't be more tricky. My very important PhD exams are already scheduled for the beginning and end of October (two, day-long, written exams) and my oral exam will be early December. Waiting till mid-November is a decent window for Jon's work, too, and for Jack's school schedule, with Thanksgiving and Christmas time off. The hard part about having the surgery in November is the wait. Waiting is so hard.
The surgery? An open reduction with femoral acetabular osteotomy. This is in the family of the Pemberton technique, which I'm sure is named after a fancy surgeon of the name Pemberton. In the process of researching Jack's exact surgery, we found that there are many types of hip osteotomies. Many times, an orthopedic surgeon won't know the exact surgery until he gets in there on surgery day. Surgery will last all day, so we are hoping to get a morning time-slot. We will plan to be in the hospital at least two days post surgery, maybe three.
The recovery? Well, this is where we are most worried. First, let me tell you about the cast. It's a body cast that will go from Jack's ribs to his toes on the left side and to mid-thigh on the right. He will also have a bar connected between his legs to add additional stabilization. It's super important to keep the hip in the exact right position as it heals. The cast is semi-waterproof, but Jack won't be going near water. There will be an opening for his g-tube and for toileting (totally freaked about this toileting/diaper part). The time in the cast is probably why the doctor called this a "beast of a surgery." Jack will be completely casted for at least six weeks and then will have months of rehabilitation afterward.
All this has been hard to swallow. Yes, in the scheme of Jack's life, it is not one of those life and death things, but it's a hard thing and something that will be very difficult for Jack to go through.
The day after the news, I was sitting around a small table with some close friends. One said "Jessi, what do you need for us to do to support you through this? How can we be helpful? We love you." And that conversation is really indicative of how our family and friends have reacted. The offers of help and the many texts and emails we have received have been incredibly encouraging. Each time we go through these bumps in the road, I remember just how good we have been treated and I hope to pass that support to others facing the hard stuff.
This is just part of Jack's story and as always, life goes on. Jack has kindergarten to get ready for. I have studying to do. Jon has important work things. We will try to live our life and not fixate too much on November 16th. This preemie life is no joke and yeah, it can sneak up on you when you least expect it. We had a beautiful few years of being surgery-free and like they say, you have no idea how good you have it without those valleys.