Tuesday, July 28, 2015

The Details

Last Monday we took Jack in for a routine check-up with a new orthopedic surgeon. We had been in the process of consolidating all of Jack's medical care to one city so we could cut down on travel time and to make life a little easier on us. I'm sure I've complained before, but traveling across the state of Montana, in different directions to different doctors, is tiresome. We'd heard good things about this doctor and Jack's muscles have been in need of some Botox for awhile, so we made the appointment with that in mind.

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.

The details:

Where? Missoula.

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.
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Donna Sorensen said...

Hi Jessi, as a practice I don't comment often. Your stories always touch my heart. If there is anything we can do here at the Montana School for the Deaf and the Blind to support you and your family in any way, please let us know. I know it's hard to take people up on their offer. It's hard for us sometimes to know what families need. You are in our thoughts, prayers, well-wishes!
Donna Sorensen

Jessi said...

Thank you, Donna! That is so very thoughtful of you. We will let you know if we need anything, but just knowing you care means a lot.

Elizabeth said...

Have some good friends whose son with CP just had an osteotomy. Recovery has been great. I assume in your preemie/CP community you already have contacts with experience, but if you'd like to talk to another family, I'd be happy to connect you.

Anonymous said...

That sounds hard! I hope you do let friends and family give you all the help and support you need.

This blogger had an infant in a similar cast and they give some good advice at the bottom of the post about keeping poop out. Maybe it's helpful to you:



Jessi said...

Thanks Davidah! That's actually super helpful.

Beverly said...

My prayers are with you all. I've been following for quite a while and I do love Jack and hate to see him go through this but know it is necessary. I'm in NC so I am limited in ways to help you. Just know if there is ANYTHING I can do from NC, I'm ready and more than willing. You will remain in my prayers as always.