Four Months

Gracie’s last dose of antibiotics was on October 17. She has made it four months and about a week, which is either her longest stretch ever or her second-longest. When she was 8 months old, she got RSV, which turned into pneumonia, necessitating her first-ever course of antibiotics. She spiked a fever from the RSV on Easter Sunday in 2011—it’s easy to remember timelines when events occur on holidays.

After that RSV/pneumonia episode, Grace got pneumonia again the following October. Then again in December, then in February, which led to her first-ever hospital stay in February 2012. I remember clearly that she had a bunch of unexplained wounds on her fingers during that hospital stay—it was the beginning of her finger-biting, but we didn’t know it at the time. On Easter 2012, Grace bit her finger at church, which was the wound that turned on the light bulb and made us realize she doesn’t feel pain. She had a course of antibiotics for that wound too, and for many other wounds over the next few months, culminating in gangrene and her first amputation in August 2012. She had a five-month course of antibiotics after the gangrene/osteomyelitis incident, stopping antibiotics in January 2013. Five days after her last dose, she caught a nasty virus which again led to pneumonia and another long course of antibiotics. She finally was off the medicine again in about March 2013.

In June 2013, Grace bit open the finger with the amputation (and a few other fingers, too) and her bone was exposed. It was not long before the wounds became infected and she was again on antibiotics. In August 2013, we found Dr. D, the awesome infectious disease specialists who just switched hospitals, and she followed Grace through a shorter course of antibiotics. About ten days after her last dose of medicine, Grace spiked a fever—the day before we were supposed to fly to NYC to see a doctor who specializes in people who don’t feel pain. She got worse and worse over our trip and was admitted pretty quickly when we got home with a bad kidney infection. When she stopped the meds after that kidney infection, it was about 10 weeks until she developed a bad finger infection. That was January 2014. She was on antibiotics for most of 2014, usually with no more than 10 days in between courses for various infections. That all culminated in August 2014, when she had the bone infection and amputation and antibiotic resistance. She finished her course of meds to treat the osteomyelitis on October 17, 2014.

Today, I am taking Grace to the doctor because one of her fingers is badly infected. She removed her fingernail Saturday (I don’t even know how that’s possible!) and I’ve been having trouble keeping the wound dry. Yesterday, purple spots appeared in the wound. Purple is a bad color for wounds—it usually seems to indicate gangrene or tissue death. I texted her doctor but she never got back to me, so off to her office we go. I do not know if oral antibiotics are going to work for Grace; she has had so many infections and courses of antibiotics that they don’t work for her any more. I am worried that she needs to be admitted, but the finger doesn’t look bad enough for an ER doc to admit her. Hopefully her doctor will be able to find a solution; I’m not sure there is one at this point except to wait and see what happens.

But still, four months is great. She had a chance to start to recover from her antibiotic dependence. There’s a chance the medicine will work for her now. I’m not feeling optimistic but am trying to keep my hopes up that she will get by on oral meds. Fingers crossed… (Except the infected one.)

UPDATE: We just got back from the doctor’s office. Grace’s finger actually looks better now than it did this morning—could it be that her body is fighting the infection on its own?? Her doctor, who is absolutely awesome, took blood and x-rays, even though we both expect it to be normal, just in case Grace ends up being admitted so we can have a baseline. She didn’t prescribe any antibiotics. She knows as well as me that there’s no point in using a medicine that doesn’t work anyway. So, we’re going to wait and see what happens. Maybe, just maybe maybe maybe, we can get through a few more months without antibiotics. Still keeping those fingers crossed!

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