It’s been a long day.

Today started out like any other Tuesday. I got up, got the kids ready for school, got them on the bus, got myself ready, and went to work. It was a fairly productive work day, although I got several texts from Gracie’s helper at school.

The first text came in around 11:30. The helper found two new cuts on Gracie’s hand – she sent me pics so I could give advice on how to dress them. We texted back and forth a bit as we worked out the finer details of how to bandage the finger. I advised her to put a bulky bandage on the finger to give it an extra layer of protection. She didn’t really know what I meant; she has never seen how I externally protect wounds in order to help them heal. She said she put an extra bandage over the top, and I let it go.

The helper texted me again later, saying Grace was complaining of aches.

Red flag!

Even though she does not feel pain correctly, Grace gets body aches when she’s feverish. She will complain that her neck hurts, her legs hurt, her arm hurts, even her hair hurts. I asked the helper if Grace was moaning or if she felt warm – other signs of fever. She said Grace felt a little warm, but her temperature was roughly normal at 98 degrees. By that time, it was time for me to leave work to pick up the kids from school.

I got to the school just as the bell rang, but neither kid was waiting for me. I waited outside for a bit, as is our custom, and eventually slipped inside when another kid left the building. Finally, I saw Jackson coming down the hallway. He ran upstairs again to retrieve his lost lunch box, and I poked my head into Gracie’s classroom. Her jacket, walker, and backpack were right there on her desk, but she was nowhere to be found. I chatted with the classroom teacher while gathering her things, and soon Jackson came back with the lunch box. Not long after, Gracie and her helper came into the room – they had been in the restroom.

The moment I saw Grace, I saw a red streak down her hand. Sure enough, that finger was infected. Our plans of swimming lessons and homework flew out the window – we would have to go to the ER instead.

We got home from school and I hastily packed a bag. Until September, Grace had always been admitted for streaking infections. She wasn’t admitted in September, though; I had some hope that they would follow the same protocol and we would be allowed to come home tonight. But I couldn’t take the chance – it is better to pack a bag and not need it than to go unprepared.

The ER was unusually busy tonight. Normally, we do not wait long at all in the lobby; tonight, it was about 15 minutes before a nurse came out. Often, the doctor is waiting at the door for us when we get there; tonight, we were there close to an hour before we saw her. They usually start an IV immediately as a matter of course with Grace, but tonight it took about two hours before the nurse was able to get it in. We do not mind waiting; hospital time is different than regular time, and waiting is part of the gig. As we waited, though, I watched the red streak on her hand get darker, wider, and longer – the infection was progressing before my eyes.

As with the September ER visit, the doctor declined to admit Grace. She did blood work and x-rays, and gave one dose of IV antibiotics before sending us home. I guess it’s a sign that they trust me? They know I will not stay away if Grace worsens. And supposedly the antibiotic they gave her has equal absorption per IV and per oral, so there is no advantage to using the IV. (Anecdotally, it certainly seems like IV meds do a much better job, but formal studies conclude otherwise.)

The ER nurse was wonderful. We have seen him before. In fact, he was the nurse when we had our September ER visit, too. He remembered us and chatted with me about his teenage children and my little ones. When the doctor discharged us, he made sure to ask whether I felt okay about it. (Honestly, I don’t know if I do… the infection is growing rapidly, but I don’t want to stay at the hospital. It’s hard to know what’s right, so I’ll just trust the doctors this time.)

We left the ER after 7. It was dark; Grace remarked that “it turned to night!” She was hungry, so I treated her to her favorite – cheesy fiesta potatoes from Taco Bell. We stopped at our local Walgreens on the way to drop off her prescription; the tech said it would not be ready until 9:15 or so.

It was after 8 when we got home. Jackson was already showered and in pajamas, watching his iPad on my bed. Grace ate some of her food, but did not want her usual amount. She laid down in her bed and started shivering and moaning – fever symptoms. I gave her some Tylenol, remembering the ER doctor’s flippant attitude toward fevers (she said she didn’t mind fevers, since we already know Grace has an infection). The kids and I settled in for our bedtime routine of prayers and songs, and I lay with them for a bit, snuggling and trying to calm my thoughts.

Finally, I got up, remembering the pharmacy errand. When I got to the drive through window at 10:13, the blinds were closed – that has never happened before. A sign in the window advertised pharmacy hours of 8 am to 10 pm. I went in the store, hoping the pharmacy would be open on the inside. It wasn’t. The person at the register said the pharmacy stopped being a 24-hour pharmacy just a few months ago.

The stress of the day overwhelmed me on the way home. How would I get Grace her overnight dose of medicine if the pharmacy was closed? Would I have to take her back to the ER? Could I substitute a different, lesser antibiotic for the overnight? How could they do this? Why didn’t the pharmacy tech tell me they were closing at 10? I would have gotten there sooner if I’d known they would close. It was all too much; sometimes it seems like we can never catch a break.

The story has a somewhat happy ending. I called a different Walgreens across town that has a 24-hour pharmacy, and they can fill the prescription. I won’t get home until after midnight, but I can give Grace her medicine any time after 12:15, so by the time I get home she’ll be ready for her next dose. It will be a late night, but it’s not as bad as having to go to the ER again just for a medicine refill.

Some days just suck. Today was one of those days. Here’s hoping tomorrow will be better.