Yesterday, after I brought my daughter home from physical therapy, I sat down, weary from the trip. These days the pain is constant. I do not drive when I take my pain medicine, so the pain had caught up with me. My little daughter decided that she was going to give me a massage. She ran upstairs to get her lotion. Soon after I heard a bump then a scream.
I find my daughter grabbing her ankle and saying, "It's broken! Take me to the hospital!" Not wanting to add to the drama, I got ice and gave her pain medication. I got her into my bed and she rested with me for about 45 minutes. Thinking that the pain meds had taken effect, I asked her to move her ankle. She would not. I asked her to stand on the injured foot. Again, she would not.
I then realized that I needed to make some phone calls. I started with my husband. Because my pain level was high and I still had not taken anything, my head was not clear. He suggested that I call our geneticist and ask his opinion on what to do.
The reason for the confusion is that the orthopedic surgeon that follows the kids at Children's was very rude and upset us all the last time we visited him.
Anyway, while I was still talking with the geneticist, my injured daughter bangs on the door and asked to go outside and ride her bike! I had just tried to get her to stand and now she was running outside!
I was mortified as the geneticist could hear all of this. I apologized and he just laughed. By the time I could get my daughter outside, she was already on her bike.
Angry and upset, I scolded her for "lying" to me. I made her stay in her room until my husband came home. He also yelled at her for claiming to be hurt one minute and and then running outside the next.
Later that evening, I looked at her ankle and it had swelled up like a balloon. I asked my husband to look at it and he agreed. We had to apologize to her. We also emailed the geneticist and told him it had swelled.
I called this morning to get an appointment with our regular pediatrician's office. The first available was late in the afternoon. Meanwhile, she was running through the house, dancing and carrying on like nothing was wrong. She would complain now and then, but not much. I had to force her to rest and put ice on her ankle.
When we finally got to the doctor's office, the doctor was sure it was either broken or a tendon was torn. Of course it was! We had just yelled at her for "lying" to us! You would think that after everything that she has been through, that we would believe her when she says it hurts!
The doctor sent us for an x-ray and of course it came back as a fracture. I called up the geneticist and told him and he couldn't believe it either. I asked him which doctor I should follow up with and he really didn't know. He said that almost all of the doctors at Children's do not understand the seriousness of Ehlers-Danlos.
I am not sure who we will see in the fracture clinic on Saturday, but I am sure it will be another adventure. I just hope that this adventure does not involve surgery as I am due to have surgery on August 5th.
