Last week we finally had our follow up appointment with the orthopedic doctor. But this time we had our PT in tow, which helped us all better understand what Christian and his body are doing. Luckily, this visit was a successful one in that Christian was much more relaxed so we got really good pictures of his hips. The last set of pictures, taken about five months ago, showed that his hips were dislocating, or falling out of socket. This wasn't a huge surprise to us. At the time, the doctor estimated that one side was about 90% subluxed and the other was about 30%. But with these new pictures, it shows more like 60% out of socket on both sides, which is just what I suspected. I had a feeling Christian's positioning and tone exaggerated the previous pictures.
So what do we do? Well, the decision is to operate or leave it be. If we decide to operate now, we're told it will be a lot easier to place the hip back into the socket. But it's a big surgery with a partial body cast that lasts for six weeks! I just don't know if it's necessary. His hips don't seem to be bothering him and he doesn't even seem really sensitive to rotation or sitting. The alternative is allowing them to fall out. And if they fall out, then what? This really isn't anything I considered when we started this journey. Just another example of the twists and turns that occur in life after brain injury with a child that doesn't walk or crawl. It was easy for me to accept because it made sense. He never even took his first unassisted step at the time of his injury. So the odds were stacked against him.
Let me share my biggest concerns. Because Christian doesn't bare weight often, his femur bones are very fragile and very thin. We've had a few fractures already. I'm afraid if they cut into them, which is what the surgery would entail, there will be problems and his bones will not be strong enough for the hardware. I'm also concerned that we will be traveling down a road of more issues and surgeries caused by the initial surgery. If surgery is inevitable, I want to wait until it is absolutely necessary.
The doctor said he is okay with whatever we decide and that he can make an argument for both sides. He did suggest a minor, outpatient surgery to Christian's knock knees. Because they are pulling inward, it actually puts more pressure on the hips while pulling them out further. So this would straighten out his crooked legs and hopefully slow down the subluxation of his hips.
After discussing this with my husband, we're both in agreement that we want to hold off on surgery. We'll check his hips every six months to see what they're doing. But, we are considering the outpatient knee correction.
You know, I'm at peace with the idea that, barring any Divine intervention that God might bestow upon us, Christian won't walk. It's honestly not a big deal to me. If he enjoys life and is happy and healthy from the comfort of his wheel chair, I'll be a happy Mama. And because we're not trying to protect abilities like walking, hips falling out of socket is not a devastating idea, as long as there is no pain involved. We have to ask ourselves - Why are we doing this? We're not protecting his ability to walk. It will always go back to pain. If he isn't having any, we're just not going to make any moves.
In my Mommy heart, I firmly believe that if his hips fall out of socket completely he will be fine. If, for one second, that belief is challenged and Christian begins to experience pain or discomfort, then we'll reevaluate. I think when it's time for surgery, we'll just know.
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4 comments:
Shauna, you should research about ABR therapy. It's rehabilitation of musculosceletal system and it works. I do it on my daughter and see almost daily how her body changes back to its normal shape.
Hi,
My son's hip was also dislocating and we too were faced with the "bone cutting", femur derotational osteotomy surgery. My husband and I decided to get a second and third opinion, which led us to Dr. Nuzzo in NY. Here's his website link --- http://www.pediatric-orthopedics.com/Treatments/Muscle_Surgery/Perc_Lengthening/perc_lengthening.html
It will be 4 years since the SPML/PERC surgery the in June and his hips look great! This surgery doesn't involve any cutting, just needle punctures.
I just wanted to pass along the info. If you have any questions, please feel free to inbox me on Facebook.
Carol Z.
I'll be back...my pie is screwed, and I want to give these last posts more time!!
Hi ~ me again.
Isn't it amazing the decisions we have to make? I know you and Manny know exactly what is right for Christian. As you said, you are going to just go with it. I agree, that is the right decision. And if anything changes ~ from here to there...then so be it!
Love you girl!
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