For months, maybe even close to a year, Brian and I have been exploring options regarding Ian's scoliosis. As with all kids who have any form of muscular dystrophy, scoliosis comes with the territory. To try to help with the progression of the curve, Ian has been in and out of back braces. I would have to say more out of them then in as when he did have movement the back brace would restrict the movement he did have. In addition, he did not find them comfortable. Brian and I felt that we would rather him have the movement, then be restricted. We have worked hard on positioning techniques to try to keep him as straight as possible, however there is only so much one can do. At his last x-ray about 4 months ago, Ian's scoliosis curve was closing in on 80%. We have known that surgery would be an option...there are two different kinds; a growth rod or a fusion. With the growth rod, he would have one surgery now and then every year have to have another one...putting Ian thru one surgery is a hard enough decision to make let alone knowing that he would have to have more. The fusion would be one surgery and done...this sounds much better to us. After seeing his primary orthopedic at Hopkins we decided to get a 2nd opinion with an orthopedic at DuPont Hospital in Delaware. The Hopkins MD wants to do the growth rod surgery where the DuPont MD wants to do the fusion. Our other option would be to do nothing and his curve would continue to grow and eventually his spine would touch his pelvis.
On Friday, Brian and I met with the doctor at DuPont to discuss back surgery and find out exactly what he would do along with pros and cons. We were able to have a more in depth conversation without Ian there. Dr. Mackenzie would do the fusion from T1 to the pelvis. So Ian's incision would be all the way down his back. He would be in the PICU for 3 days and the move to the rehab unit for about 4 days. Of course this is all in an ideal world. Getting the fusion would provide Ian with more comfort, better posture, more room for pulmonary to function, more room for GI to function, all of the above would give him a better quality of life. The cons are him having surgery, risk of infection, risk of pneumonia or anything dealing with his breathing. However, him already having the trache is actually in his favor. All of this being said we have scheduled surgery for March 31st. We would love to get it done sooner, however we will not electively put Ian in the hospital during flu season and Dr. Mackenzie is already booking into January or February. As I told Dr. Mackenzie, we feel good about everything when we are talking with him however once home over time we 2nd guess ourselves. He said this is all very common. He said most families who have kids with SMA which is the closest to what they can compare Ian to have not had regrets about doing it.
We do know that many may think that doing this kind of procedure on a child as sick as Ian with an unknown life expectancy is cruel…we ask that you not judge and support us in this decision as it will be hard on everyone in our family. All Brian and I have ever strived for is comfort and quality of life for Ian and if doing this surgery is going to help with both then onward we will go.
|The x-ray on the left is from Ian's appointment about 4 months ago while the one on the right is from 6 months before that. You can see the difference and how the curve is growing.|