Amy has had increased pain in the mornings since Monday. I took comfort that we were due for x-ray a week later, and we coped with letting her leg rest, and Tylenol.
On Wednesday night, I felt a hard piece of bone where I never had before. I was really worried, but Daddy didn’t feel it, and she didn’t seem to uncomfortable, so I let it go.
Thursday morning, her pain was acute. I panicked. I called into work, took her straight to urgent care and had x-rays done. I saw the films, and my heart sank. They looked so much worse, and I saw a dark shadow where previously, there was none. I sat in the dressing room and cried. My hopes for her cure, surely smashed.
The tech came to tell me the images were fine, and that we could go. I asked if the radiologist saw a fracture. She said that it was hard to say, because she had nothing to compare it to. I immediately produced old x-rays that I keep on hard, for moments just like this. She took them and left.
I prayed. I prayed so hard. I desperately wanted to be wrong… she came back a few minutes later. No fracture. I cried again, as relief flooded my system. But she was still hurt… and while I know a person trained to look at x-rays is more capable than me- I still worried. We sent the X-rays to Dr. Hoffinger for his expert opinion. Then, we waited.
Friday was a regular day. She went to daycare. I went to work. I picked everyone up after school, and then my phone rang. An unknown call from Walnut Creek- I picked up up happily, knowing the doctor would tell me I was overreacting, (again) and all was well.
He didn’t. The nurse on the other end of the line said, “This injury changes surgical planning. We need to see her right away.” My eyes swam. I confirmed her Monday appointment.” Keep her off her leg as much as possible. Don’t do anything that causes her pain. We don’t want it to worsen.” I nodded- too choked up to speak… then realized he couldn’t see me over the phone. I answered that I’d do my best. He told me how sorry he was, promised they’d take good care of her. Told me to hang in there.
I can’t breathe. I have to tell people.
I can’t bear to tell people.
I call my husband. “Come home. Now.” says his broken voice.
“I’m 2 minutes out.”
The kids are in damage control mode, deciding who will unload who from the car to lighten my load, and just let me just take care of Amy and talk to her Daddy. My kids are awesome.
The evening passes in a blur.
“Stop!”
“Don’t stand!”
“My God! Off your leg!”
My poor baby. Nothing has changed in her world. She doesn’t understand why suddenly she isn’t allowed to walk.
2am, Sat morning. I wake up. Amy is asleep next to me on the pull-out sofa. Her brace is off. Why??? Another CPT Mom is up. We talk, I feel steadier. We make plans. She sent me studies to read, we talked about questions to ask… I turn my sleeping daughter. Slide her sock up her special leg, and she whines, but sleeps. I slide her brace on, and she cries out in pain. Fully awake, she begs me to take it off. I refuse, try to comfort and calm. She screams, and my heart shatters into a thousand pieces. I pull her brace off. She silences. “Thank you.” she mumbles. She instantly falls asleep.
What the hell happened? She has to wear it!
I leave it off.
Saturday morning- decent hour. I call the doctor, and get the answering service. A few minutes later, a Stanford doc called me back.
“Do you know anything about Congenital Psudarthrosis of the Tibia?” I ask.
“Of course.” He responds. Ok- I can talk to this guy. I explain what’s happened.
“Having her immobilized is the most important thing. So she needs to wear the brace. But, if it’s causing her pain, then perhaps her leg shape has changed too much. You can come in now, and we will splint it- but that’s quite a drive. Try a local ER or Urgent Care and get it splinted. Keep her off that leg. Hang in there, we’ll see you soon.”
I call around- there’s one urgent care in town that takes our insurance and does splints on children’s legs, the same one I went to on Thursday. We leave as soon I dress.
The waiting room is so full, there is no room to sit. Plus they have no priority system. First come, first served. I explain why I’m there. Beg them to just splint her and we’ll leave. The same doctor is there that saw us Thursday. He takes us back right away.
He shows me the radiologist’s report from Thursday. “Healing Fracture” right there in black and white. He’s dumbfounded when I tell him we’ve never seen a fracture on her x-rays. “No one called you?” No one called.
He takes my old X-rays, and my new ones to come to his own conclusion. Some minutes later, he returns to show me her “very obvious fracture”. I point out that he’s holding the wrong x-rays, and that there is no fracture there.
“Um… I’ll be right back.” he says.
This does not inspire great confidence. I hate CPT.
He returns 15 or so minutes later with a copy of the report, my x-rays, and a nurse he directs to splint my daughter.
I thank him and we leave. So many feelings. I can’t even process them.
Thursday’s X-rays:
Here’s a progression of her x-rays so far:
For being such a good girl, we headed to Starbucks. She hates the splint, and wants it “off, off, OFF!” But drinking her “chocolate treat” she chills, getting used to it.
Gotta get through the weekend. I have a lot of studying to do, and a house to make immaculate. I don’t know what Monday will bring or what the doctor will say, but prayers for strength and healing are appreciated. It will be a Very. Long. Weekend. ?
Positives: she doesn’t want to walk with only a splint on.
