As many of you already know Ella had bi-lateral hip surgery with some reconstruction of the left socket this past summer.
Since Ella never walked her hips did not develop normally--the head and neck of the femur bone should develop a nice socket in the hip bone as babies grow into toddlers and young children. The head of the femur should rest deeply in that socket. Bearing weight by walking allows not only the angle of the neck of the femur to be formed into an approximate angle of about 120 degrees to the long bone but also hardens the all the bones.
Ella's angle was almost 180 degrees and definitely not in the sockets...in fact, the left socket was barely developed (hence the reconstruction part of the surgery). Since the degree between the long bone and the neck of the femur was practically a straight line the entire right and left femur bone began riding up rather than angling in. Her alignment was way out of whack and as it progressed her sitting balance was compromised. Needless to say it would have only become worse and more painful over time.
During the surgery the right leg went beautifully and as we look at it now it is fantastic! Wonderful range of motion and the x-rays show a hip joint that looks like a hip joint should. The left leg, however ran into some complications. During surgery when the doctor was placing the bracket into the neck of the femur the bone, compromised in strength by SMA, broke. He placed the bracket in a slightly different position and we waited for bone growth to take place. During the past few months the bracket has slowly been slipping out.
Ella's in pain.
Corrective surgery is scheduled for next Tuesday March 15, 2016. For this surgery the new bracket is a different type that has more screws which are also longer going into the long bone and the neck of the femur (the above bracket is only screwed to the long bone). With that being said the surgeon will have to determine if the bone itself is healed enough and strong enough to take this new bracket. That determination will be made during this upcoming surgery.
Here's the status after consulting with her surgeon a few days ago:
If her bones ARE strong enough for the new bracket/screws:
Since Ella never walked her hips did not develop normally--the head and neck of the femur bone should develop a nice socket in the hip bone as babies grow into toddlers and young children. The head of the femur should rest deeply in that socket. Bearing weight by walking allows not only the angle of the neck of the femur to be formed into an approximate angle of about 120 degrees to the long bone but also hardens the all the bones.
Ella's angle was almost 180 degrees and definitely not in the sockets...in fact, the left socket was barely developed (hence the reconstruction part of the surgery). Since the degree between the long bone and the neck of the femur was practically a straight line the entire right and left femur bone began riding up rather than angling in. Her alignment was way out of whack and as it progressed her sitting balance was compromised. Needless to say it would have only become worse and more painful over time.
During the surgery the right leg went beautifully and as we look at it now it is fantastic! Wonderful range of motion and the x-rays show a hip joint that looks like a hip joint should. The left leg, however ran into some complications. During surgery when the doctor was placing the bracket into the neck of the femur the bone, compromised in strength by SMA, broke. He placed the bracket in a slightly different position and we waited for bone growth to take place. During the past few months the bracket has slowly been slipping out.
Ella's in pain.
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| Ella's hip x-rays (March 2016) |
Here's the status after consulting with her surgeon a few days ago:
If her bones ARE strong enough for the new bracket/screws:
- The surgery will last about 3 hours
- He thinks she will stay in the hospital 2-3 days, starting in the PICU and going from there (last time he estimated 3-4 days and it ended up being 7)
- She will be flat in a plaster body cast for 6 weeks to prevent ANY movement (there is a slight chance that she can be in a removable body splint like last time, but he thinks he'd prefer that she is unable to move that area at all)
- She might be able to start easing back into school 3 weeks after surgery (after Spring Break), if she can tolerate it (starting with half days).
- She will be in the reclining medical stroller and will need someone to push her. She will also be in diapers, as she won't be able to sit on a toilet.
- After the cast is removed, she can slowly start to move into an upright sitting position (will take weeks before she will be able to sit in her power chair).
- He hopes she will be fully recovered 8-12 weeks after the surgery (resume sitting in her power chair, stander, etc.).
If her bones are NOT strong enough for the new bracket/screws:
- He will take some bone from a different area of her pelvis and insert it into her hip area to make it stronger.
- She will be in a plaster cast for 6 weeks while the area heals.
- She will then go back and have the bracket surgery (and start over at the first bullet point listed above).
- It may be 5 months before she is fully recovered.
We know that correct hip alignment will be the best thing for Ella as she gets older. We know that if we had waited to do the original surgery it would have been much more risky to do later since the disease leaves her weaker and weaker over time. We know that the pain she feels from surgery will eventually go away, but the pain from the femurs being out of their respective sockets is excruciating and that pain lasts forever unless fixed. We know her doctor is top-notch in the SMA world. We know that some circumstances beyond anyone's control led to some complications. We also know that the consequences of the complications are able to be addressed--and we're grateful for that.
So we step back. We take a deep breath. We once again do whatever we have to in order to take care of our Ella.
