Gracie’s no-antibiotic streak ended this week, and boy did she go out with a bang. She made it over eight months – all the way from October 17 of last year. But now, she has a kidney infection and cellulitis in her knee and isn’t responding well to the big gun IV meds. Turns out she’s still resistant to antibiotics.

Now that your curiosity is piqued, I suppose I’ll get to the story.

On Monday, Grace had an appointment with the low-vision specialist. It went pretty well. Gracie’s functional vision is roughly the same as it was last year or possibly better, so that’s great news, especially since we expected it to be considerably worse. Perhaps when it’s seemed she can’t see things it’s just that we’re noticing what was always there. Because the doctor appointment took a while and was across town from our house, I decided to skip the daycare-then-0ffice commute and work from home the rest of the day. During the day, Gracie was acting, for the most part, completely normal. The qualifier is that twice during the day she said her back hurt, but she was wearing a pretty dress with a knot in the back, and it seemed the dress could have been causing her discomfort. I changed her into more comfortable clothes and checked her spine and thought little of it.

Later that night, after dinner, I took the dogs for a walk. When I returned, Gracie was crying about the pain in her knee. When a kid who can jump up and down on her knees says they hurt, you pay attention. She rarely feels any pain, and to be crying about something hurting means it’s a serious hurt. I pulled up her pant legs and looked at her knees. Her left knee was red and hot, suspiciously like cellulitis, but she also had three pimple-like lumps that could have been bug bites. I debated whether to take her to the ER, but decided instead to give her Benadryl and see what happened to the redness. (Gracie reacts very strongly to every bug bite – a little mosquito bite will cause a huge hard red lump, for example.) I gave her tylenol for the pain at 7:40 pm and gave her Benadryl about an hour later, right when I was putting the kids to bed.

Gracie fell asleep right away, thanks to the Benadryl and a full day, but when I tried to carry her into her own room, she felt a little warm. She started moaning and writhing in her sleep, as though she couldn’t get comfortable. She has done this before – these are called rigors and they are a body’s reaction to a steeply climbing fever. The body can’t compensate for the temperature change and so it begins shaking. When the fever spike is complete, the shaking stops. Of course, then there’s a high fever…

I took her temp, and it was in the 99s. She broke through the tylenol. Normal for her is 97.3, so anything in the 99s is cause for concern for me. I kept checking her temp every 15 minutes or so and every time I checked it was higher. When it reached 100.5, I bundled her up and took her to the ER. Her temp was 102.4 when we got there.

The doctor at the ER is someone we’ve seen before. He is kind, smart, and thorough. He remembered us too, which is always great at an ER. I gave him the night’s history and he checked out the knee, and ordered blood work, x-rays, and a joint puncture. Everything was normal. However, he also requested a urine sample, and sure enough she had a bladder infection. The doctor was pleased to have found the source of the fever. He gave her a dose of IV antibiotics and sent us home with a prescription for orals and directions to visit ortho in the morning to check on the knee. Although the knee was nagging at the back of my mind, it was 3 am by that time and sleep was more of a priority.

The next morning we went to ortho. We saw a doctor we’ve never seen before but it was in the practice that has been enormously helpful for Gracie. This doc, too, was amazing. She was thorough and very nice. She drew an outline around the redness, told me to give Gracie some more Benadryl and see what happened, and worked out a plan for contacting a new ID doc that Gracie’s regular ortho had already recommended. She spent over an hour with us, and we had a plan when we left – try the Benadryl, contact her in the morning, and get the prescription filled.

Gracie spent the whole day Tuesday laying around, either on the couch or in bed. She slept hard for a few hours in the afternoon and had no trouble getting back to sleep that night. The next morning, she was almost herself again – walking with no problem, cheerful, alert – for about a half hour. After that she lost all energy and started to spike another fever. I gave her ibuprofen at 9:45 am and drew another outline around the redness on her knee – it had expanded significantly. I called ortho and left a message that although she was acting more like herself the redness had expanded. The doctor called back after a couple hours, displeased that the redness had not shrunk back with the antibiotics. She wanted to talk to Gracie’s regular ortho and call back. Around 1:15, her scheduling person called to set up an ultrasound of the knee. By this time, Gracie had started shaking with rigors again, and I told the person on the phone that it seemed like she just needed to be admitted. The scheduler said they wanted to ultrasound the knee to see if the fevers were from that or if she needed to be seen by a different specialist and told me to bring an overnight bag.

I decided not to medicate Gracie before the ultrasound – I wanted the doctors to see what I saw, to see her at her worst. Was it the right decision? I don’t know. She was shaking through the entire ultrasound and the doctor who read the films was appalled about the level of redness. The tech told us to wait in the lobby because the ortho doc wanted to call us. The ultrasound hadn’t shown any abscess and it didn’t look like the infection was in the joint, but that was small reassurance with the knee – half the leg, by this time – so red and swollen. Before long, the scheduler told us to go to the ER and the ortho was on the phone with the ER doc.

When we got to the ER, Gracie’s temp was 105. Poor kid! I would have given her something if I’d known it would get that high. Not exactly feeling like Parent of the Year there! The ER doc told us within the first few minutes of our arrival that Grace would be admitted. I thanked her – when you go to the ER, you don’t know what the doctor will decide. You don’t have a preexisting relationship that you can rely on to plead your case. I was not sure if I would have to fight to get Gracie admitted. It was nice to have that news right away.

So, today, it’s Thursday. Gracie’s leg looked better first thing this morning, but by around 11 am the redness had again extended past the Sharpie outlines. Nearly her whole lower leg and about a third of the way up her thigh are red and hot now. She is on the “big gun” antibiotics – daptomycin – it is a broad spectrum antibiotic that will actively kill bacteria (most just stop more bacteria from growing) and it’s one of the most powerful drugs in the arsenal. She should have shown improvement today, but she didn’t – she got worse. She is still resistant to antibiotics. Eight months off was not enough.

There are lots of big scary things that could happen if the antibiotics do not work, and I don’t even want to write the words because they’re too awful. And I’m just thinking about her leg, here – I haven’t even allowed my imagination to wonder what will happen if they don’t get the kidney infection under control. Shudder…

If you are the praying type, please say some prayers for my sweet girl. She continues to be funny, sweet, and just plain beautiful through this all. She is the embodiment of Grace, and she is amazing. Please get better, little Gracie.