In one of my previous April posts, I wrote about how Renny had surgery to remove a metal plate that was from a fracture a year ago, and that she’d have to be in braces for six weeks. Two weeks ago, she got the okay to be out of the braces, and back in her new KAFOs (small leg braces). I just KNEW she was not ready, though, because her right knee was not even bending at a 90 degree angle. But, I thought, well, the surgeon had to have noticed that, and if she didn’t say anything about it, then it must be okay……I should have listened to my instincts. I should have known better. The next day or so she was bouncing on her legs so much that she was now suddenly bending ALL of the way in her knees….and the next thing we know, she has a warm, swollen knee area. T took her in the next day, and she had a fractured knee. She was put in a leg cast, for three weeks. Well, or so we thought.
A few days later, she is sitting on a little kid picnic table, and she leans forward, or twists her body weird, and she begins wincing. I take her up to change her diaper, thinking she just bumped her head or something, but when I lay her down and lift up her leg…it’s limp. I knew something was not right. And, it wasn’t. The next day (Wednesday) we take her in to get it x-rayed. She has another fracture, right above the cast. And, it needs a metal PLATE, so she needs surgery…again…and a hip spica cast….again….for six weeks….again. T and I are just broken. We were so looking forward to moving forward, to Renny moving forward and progressing, working on her walking, summer just around the corner….and then this.
She has surgery that night, and I stay the night at the hospital with her. The surgeon has changed her plans. She will wear the spica cast – which is fully on her right leg and then wrapped around the waist, leaving her left leg free – only three weeks. Then, if her bone has calcified enough, she will take the cast off and we will put her back in the full leg braces to continue to protect the bone while being able to take her out to stretch it and do range of motion exercises, for another three weeks. During the surgery, she also put some bone…graft…something or other on the bone to try to get it strengthened faster…or something like that. Also, after her bones are all healed up, she wants to have her take some medicine that is used to strengthen bones, like for individuals with osteoporosis, except it would be taken through an IV, once every three months, for a period of a year or two. Though this plan sounds better than the original, I am still not loving it.
(In my conversations with people about the situation, I have had several people ask why she fractures so much. I will try to summarize it accurately: The main reason is that individuals with spina bifida tend to have weaker bones because they are not weight bearing, walking, running, and jumping as much as a “normal” child, and therefore the bones do not receive the appropriate stimulation needed for growth, therefore resulting in weaker, less dense bones. Her orthopedic surgeon has told us that Renny’s femur bones are as big as her (the surgeon’s) pinkie. That is not very big! The weakness compounds when she has been immobilized for a long period of time. Every fracture she has had has occurred after a surgery of some sort and being in a cast or, like before, in her long leg braces. This is why, also, we have been told to have Renny standing as much as possible in her cast, so she is doing some weight bearing, and also part of the reason why the surgeon is going to cut the time in the cast, as well as to alleviate some of the stiffness that also occurs in the joints during cast time.)
It has only been two days since she came home from the hospital. It has been difficult. Though she is finally her happy self again, she cannot sit. She can only stand, and even then she must have one of us by her to make sure she doesn’t fall or twist weird (and hurt her OTHER leg or hip) – or she can half lie down in her wheelchair, which she isn’t too fond of. So, she is pretty high maintenance. And heavy. If this continues, it will be a very very long 3 weeks. I am looking into getting a second opinion at another healthcare facility, just to see if they have any other recommendations for treatment/aftercare, to stop this vicious fracture cycle.
So, not good news. And though we are still very upset and unhappy about the whole situation, we will get through it…again. And we will learn through this and we will trust our instincts more and what we know about our daughter, and look into other options as needed. I think we were too trusting of the doctors – not that they aren’t good, they just don’t always know everything about our child and her disability like they should. And so, I ask for prayers again. That Renny’s bones will heal and strengthen quickly; that if there is a better route that a second opinion consultation would reveal that; that her muscles would become stretched in good time; that there would be no more obstacles….
Here are pics of her new cast: