Frame 4

She stayed at school.

Wrapping the ribs stabilized her enough to make her comfortable when she moved. She was able to get herself to a sitting position with much less pain, and even transferred herself between chairs. Sitting up for long periods still isn’t fun, but she figured she could manage lying down when needed well enough without assistance.

Her friends are a sturdy support group. So any of them had wanted to rush her to the hospital upon hearing she was in pain. I overheard her talking two of them down off that position even after I arrived. So maybe I should explain to the uninitiated our reasoning.

Generally, we manage Sophia’s fractures with immobilization, painkillers and rest. We have long had ace bandages stuffed in multiple nooks and crannies from on-the-spot fracture wrapping. When she fractures, we do not usually go to the ER, as horrifying as that may sound. It is incredibly unusual to find an ER staffed with a doctor who has even a passing familiarity with OI. To handle a fractured person with OI, the medical staff needs to understand how OI bone is different, and that typical fracture management techniques are ill-suited to addressing OI fractures. In our case, Sophia has never had a cast on any bone, because the weight of the cast could cause fractures in other bones. That’s not true of all OIers, but it is true of her.

Also, we learned early on that the process of getting her to the doctor while she had a fracture was brutally painful and had little benefit. After wrestling the delicate child into and out of the car, and then waiting in uncomfortable chairs for who knows how long, then transferring to the exam table, then transferring to the x-ray table, then back to the exam table, all with a fracture…then having the doctor say “yep, its broken! stabilize it and take some painkillers.” The whole process wasn’t worth the pain it put her in. There are fractures that rise to the level of needing medical attention, but that’s when we go to the specialist we’ve lined up for that purpose. Shriners was our go-to hospital, but now she is established with a teaching hospital out here. 

Her well-intentioned friends stood down, and stood by her side, delivering her meals and treats (a peanut-butter-chocolate tart hand delivered by a beautiful Brazilian? yes please!), and have promised to spot her when she feels insecure about a transfer. She felt much better when I left, so I’m hopeful her improvement continues.

None of that knowledge prevented me from waking in a cold sweat overnight, panicked about her being in pain. Frankly, I have the same middle-of-the-night panic attacks about all the kids. They each rise to the surface of my subconscious and disturb my placid sleep. It may just be a Mom thing.

Our state agency meeting covered matters not related to an assistant, but we do have a line on a resource that may prove beneficial. More on that as it develops.

For now, we’re all in our places with bright shiny faces. And I have to go back to my daily life, where I’ll try to ignore the worry that’s niggling at my edges. And I’ll text her every couple of hours, just to ease my mind.