A long time ago, I wrote “The Story She Hates to Hear Me Tell” about how we figured out Gracie couldn’t feel pain. I never wrote the rest of the story, though, and I suppose now is as good a time as ever.

The first specialist we visited after finding out Gracie doesn’t feel pain was a neurologist. She did some tests in office, poking Gracie with a needle, checking for reflexes, a full neurological exam. She recommended doing an MRI of Gracie’s brain, which would have to be done under anesthesia. We scheduled it for that June.

During this same time period, Gracie continued to bite her fingers. An average of 7 fingers at a time had wounds in various stages of healing. The most fingers ever involved was 9. She started to get infections in the wounds, and had course after course of antibiotics that summer. Each time she’d get over an infection, a new wound would appear, each wound worse than the last. I got a call to pick her up from daycare one day because she had torn most of the skin off her right ring finger, plus part of the fingernail. I took her to urgent care for that wound, and they wrapped her hands in burn dressings then put big boxer-style bandages made of Coban around the whole thing. The boxer gloves were supposed to stay on until we saw a wound care specialist at Children’s Hospital the next week.

Our appointment with the wound care specialist, T, was two days later, but by the time they removed the bandages her entire ring finger was red, hot, and swollen. Another course of antibiotics for Miss Gracie… plus three visits per week with the wound care specialist for the next three weeks. T was amazing, one of the best providers we had seen by that point. She took a lot of time with Grace and with me, and taught me everything I now know about wound care (which, it turns out, is a lot – now, most nurses and doctors defer to me for questions of how to bandage Grace). She also introduced me to an occupational therapist at the hospital who ordered custom mesh gloves with silicone in the fingertips, so that if Grace bit her finger she at least couldn’t break the skin.

The first pair of gloves we had worked so well. Grace wore them 24/7, though, and they wore out in weeks. As soon as the seams started bursting, Grace started getting wounds again. We went back to OT for more gloves. The provider we saw the second time ordered a different kind of gloves, compression gloves, in the thought that maybe the compression would help Gracie feel. She HATED those gloves. She started getting more “degloving” wounds – wounds where she would strip all the skin off the finger by biting down and pulling. It’s horrific to write – for someone who hasn’t lived this life, I can imagine this is a hard post to read. Sorry for that. It really can be nightmarish at times, all the blood and all the self-inflicted wounds.

But I digress. So, in the meantime, we got the results of the MRI back. Gracie’s MRI showed she was hypomyelinated, meaning that the myelin sheath around the nerves in her brain was much less thick than it should be. The doctor decided to do some research and have Grace have a repeat MRI in six months, to see if Grace had delayed myelination or missing myelination.

Back to the wounds. Gracie continued to bite her fingers mercilessly. We were learning to distract her, to hand her something else to bite instead of her fingers, but it was hard. She became the master of mutilating herself in the car or at naptime, when we were helpless to stop her. She got one wound on her right index finger that led to her first major hospital stay.

At that point, I was changing Gracie’s bandages every other day, per the instructions from the wound care specialists. Sometimes I changed them every day, if a wound was draining a lot, but I relied on the wound care specialist’s expertise when she assured me every other day was enough. The thinking is that you don’t want to expose the wound to germs in the outside environment, so you don’t want to open the dressing any more than you have to. It sounds reasonable and is probably true for some people, but it was disastrous for Gracie. That index finger wound started to smell on a Friday night, but I ignored the little voice inside of me and decided to change the dressing in the morning (which was the second day). By Saturday morning, when I took off her glove to check the dressing, the whole thing was soaked with blood, all down her hand. I will never forget that panic, that terrible sinking feeling. I was shaking as I took the bandages off, and what I saw was terrible. Gracie’s finger was dissolving. Literally. The skin was pulling off with the bandage. It was mushy, it was bloody and pulpy and a mess.

Frantic, I called Chad, who had just left for work. He rushed back home and said, with tears in his eyes, “She’s got gangrene. You have to take her to the ER.” I sped across town the 25 miles to the Children’s Hospital. By the time we got there, I was hysterical. If only I’d listened to that inner voice… I knew I should have changed the dressings the night before… her finger was DISSOLVING! What do they do for that??? I sobbed to the triage nurse, and she took us right back to a room. She assured me it wasn’t my fault. It is one of the major regrets of my life – why didn’t I check that wound?

The ER visit turned into a political nightmare. Gracie had a fever when we got there, and the infection was streaking into her hand. T’s boss Dr. D, the Chief of Plastic Surgery and head of the wound care department, was the doctor on call. He didn’t think he needed to come in to the hospital and instead said for the resident to give Gracie one dose of IV antibiotics and follow up in clinic on Monday. I pleaded with her, saying that all the signs of infection I’d been told to look for were there and my daughter needed more than one dose of antibiotics. She agreed that it was a political issue, that no one could override the chief’s opinion even though Gracie needed to be admitted. (She was probably a pretty new doc – she shouldn’t have told me that. But I’m glad she did.) I did ask for a second opinion, but the second doc didn’t dare disagree with Dr. D. either. Gracie got one dose of IV antibiotics and we were sent home with a plan to change the dressing twice a day and bring her to the clinic as soon as possible Monday.

The finger continued to dissolve more and more with each dressing change. On Sunday night, a hard chunk lifted out of the finger. I had a fleeting thought that it looked like bone, but quickly dismissed it. Bones don’t just fall out.

Monday happened to be Jackson’s first-ever day of school, his first day of pre-K at St. B.’s. We all took Jackson to school that day, and I got Gracie a clinic appointment for later that morning with T. T unwrapped Gracie’s finger and was appalled. That hard piece WAS the bone – it just fell out. T took some pictures and got Gracie admitted. She was appalled. She couldn’t believe Gracie hadn’t been admitted Saturday. She told us she was getting us every consult in the book – neuro, OT, ortho, infectious disease (ID), special care, everything. Finally, Gracie was getting the care she needed. But I wouldn’t be there to pick up Jackson… I wouldn’t get to hear all about his first day of school… I wouldn’t even be there for bedtime.

After that hospital stay, things changed with T. She wasn’t as talkative with us and didn’t see us without another doctor in the room (usually Dr. D.). Eventually, she left wound care entirely and went to work in the ER. In retrospect, I think she got in trouble for her criticism of Dr. D. He made it unpleasant for her, enough so that she left the department. It’s pretty messed up, when you think about it.

Gracie remained on antibiotics a long time after that hospital stay. She had had gangrene and osteomyelitis, a bone infection, and would need to be on oral antibiotics for three to six months after the hospitalization. She would be monitored by ID every couple of months for bloodwork. Although she got many more wounds that fall, none were infected. The tip of her finger eventually turned black and fell off, with just a little nub of bony something at the end.

She eventually had that second MRI and the nerve conduction study. The MRI was unchanged, meaning that Gracie was not delayed in her myelination but rather had less myelin than she was supposed to. The NCS showed that although Gracie’s motor nerves were fine, her sensory nerves were nonresponsive. The actual test results for her sensory nerves were zeros across the board – can’t get much worse than that! We now had “proof” that she couldn’t feel pain, but no answers. Years later, I learned that even most kids who don’t feel pain have normal MRIs and NCSs. Grace was an anomaly.

To be continued, eventually.