Two night ago, she asked to squeeze my finger in the midst of the longest pain spasm she'd ever had: 35 minutes of unrelenting torture. But then she stopped after about a minute, and just looked at me in that look I see so much now—in which her face is just twisted and contorted in pain. "It's not helping," she said bluntly. She released my finger and dissolved into tears, again.
Yesterday we saw the chief of pain management at a nearby hospital. He was a joy: He spoke with the average velocity of an Aaron Sorkin character, and the warm humanity of Dr. House. Within the first few minutes he informed me that B's case of RSD/CRPS was "very severe" and that he didn't understand how it could have been catalyzed by parvovirus (Fifth disease) because "there was nothing in the literature to indicate that was possible." He waved around a sheaf of papers. Had she had some other trauma? (No.) Was she stressed and did she want to avoid school? (A hundred times no: She loves school. The poor kid has been in tears over missing school. Though I would think even the most school-resistant child would have an awfully tough time keeping her leg extended and pointed 24 hours a day, 7 days a week, even during sleep, and screaming and weeping constantly.) "Well, then," he announced, "we will have to write this one up for the medical journals! This is unusual." He could barely contain his excitement.
Then, he was back to focusing on B. After bringing up (and abandoning) an idea to admit her into the hospital for the rest of the week so she could do physical therapy 3-4 times a day, he suggested giving her a sympathetic nerve block. I'd read about them, in reference to RSD patients: They're apparently a crapshoot with this disorder. Sometimes they deliver permanent pain relief to the affected area (pleasepleaseplease), other times they provide a degree of temporary relief. Sometimes they do nothing at all. So our fingers are crossed.
That doc does sound like quite the charmer. Crossing my fingers, toes and eyes for B.
ReplyDeleteWe're thinking about you all. Sending much love and positive thoughts to B, who is an amazing girl. Get better soon! xoxo, Esther, Mike & Molly
ReplyDeleteAll of my fingers and toes are crossed for the nerve block to help. FYI, once I had one that made the pain temporarily worse, then better. But it was still much better in the end, and I hope and pray the same is true for B. xoxoxoxo
ReplyDeleteI love this sweet photo. In it I see and feel every ounce of your desire to take away B's pain, then, now or ever. Thinking of you guys and willing only good + healing your way. x
ReplyDeleteBeaming her all my best healing vibrations!!!! Will send cards! (Friend of Grandma Chris, Alice Gould Butts)
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