Pre-COVID, it was a thing that Grace got sick before, during, or after every single vacation. During COVID, that didn’t really happen, because we were stuck at home and I was unemployed and we just didn’t do the vacation thing. Now, though, I have a job again and life is getting to be the new normal, and it turns out that some things never change.

I had to use some vacation time this week, and after looking into VRBOs/hotels, we decided to do a staycation instead and spend time doing fun things each day. The kids and I decided that we would go to parks and swimming pools, maybe even a museum if we wanted to. Everyone was excited.

Meanwhile, Grace had some very bad wounds on her fingers (that is a story for a different blog post), and one of them turned south the week before our staycation. On Saturday two weeks ago, the finger I was worried about became swollen and had a red ring around the tip of the finger—classic signs that the infection was starting to worsen. It was not yet at the point of needing hospital care, so I called her infectious disease (ID) doc. The ID answering service said the doctor wasn’t taking calls and we would have to call the hospital, which means we would have to go to the hospital. I called the pediatrician’s office next, and after a few transfers, I was speaking directly to Grace’s pediatrician, who knows her well and has been alongside us on this journey for many years. Grace’s pediatrician instructed us to give her a second antibiotic we had on hand and to follow up with ID as soon as possible (she was already on one antibiotic when the infection happened).

The medicine the pediatrician prescribed started working, albeit slowly. On Monday morning, ID called and set up a telehealth visit for the following day. (Side note: telehealth doesn’t work for finger infections. How can you possibly evaluate an infection properly over a screen?) During the telehealth visit, ID changed up Grace’s meds—she told us to discontinue one of the antibiotics and start a third one instead. We picked up the new medicine the next day, Wednesday, and gave her the first pill that night. By Friday, the finger had worsened again, so I called ID. No one answered. I called a few more times that day and also sent an email, but did not get a response. Finally, I decided to give her the original med again, since it had been working, and since I couldn’t get a response from the people who were in charge of medication management. Maybe she had meant for me to continue it anyway. By Monday, the finger was showing significant improvement. The combination of the three meds was working.

On Tuesday, ID called me back finally, and told me to discontinue one of those three meds (the one she had prescribed the previous week). She also told me that she was not able to continue shooting blindly with meds and we should go to the hospital for admission if any worsening occurred. I explained that every ID doc we’ve ever had has tried to keep Grace out of the hospital as much as possible, but she insisted that we would need an admission for IV meds if the finger worsened. She also said she wanted ortho to do a biopsy of the finger for culture so she could find targeted antibiotics.

That night, as instructed, I did not give her the dose of the third med, and by the following morning (Wednesday), the finger was considerably worse—more swollen and bright red. As instructed, we packed a bag for an admission and headed to the ER. We got there around 3:15 or 3:30 and spoke to the ER doc almost immediately. I explained the whole saga to the ER doc and showed her the pictures of the finger. She listened, then left the room to make some phone calls.

Three hours later, she finally came back into the room. She said she spoke to ortho, who did not think Grace needed to be admitted and said they could do the biopsy outpatient in clinic. She then spoke to ID, who again insisted Grace be admitted. The ER doc said she agreed with ID and was going to admit Grace. She left the room again, and Grace had X-rays and had an IV started, but no meds were hooked up.

Another three hours passed, and we started to wonder if they’d forgotten about us. Grace begged me to go find the nurse and ask what was happening. Instead, I found the doctor and told her that Grace was starving because she hadn’t had any dinner (it was after 9 by this time). The doctor said she’d find something, and pretty soon the nurse came in with a boxed lunch from Einstein’s with a bagel sandwich, chips, and a cookie, plus a giant Gatorade. Even more amazing, she came back a minute later with another boxed lunch for me—she said, “I realized it was incredibly rude of me not to offer you food too.” Actually, in hospitals usually they do nothing for me—it’s only Grace who gets anything, food included—so I was especially grateful. I took the meat off the sandwich and scarfed it down. They were the best sandwiches either of us has ever had.

Grace and I giggled and had fun eating our bagel sandwiches, but before we could finish, the doctor came back into the room. She pulled up a chair and sat down with a sigh. She explained how after making several phone calls, the floor doc would not agree to admit Grace because the infectious disease doc wouldn’t tell her which med to give. The infectious disease doc insisted that ortho do a biopsy first, but ortho didn’t think Grace needed to be admitted for a biopsy; they could do it outpatient in clinic. Without a med to give Grace, and without ortho to do a biopsy, she could not be admitted. The ER doc suggested we go to Children’s Hospital to see if they would take care of Grace. We can’t go there—we haven’t been there since Grace was 3 and there is a whole lot of important history that they don’t know about and won’t take my word for, like the fact that Grace can have normal blood work and have streaking infections, or the fact that she has failed antibiotics multiple times including this one, or many other instances for which Children’s Hospital has been absent. Also there’s the fact that the main doctor who would have to agree to see Grace committed malpractice on her and refuses to care for her again, so we really, really can’t go there.

Grace was extremely upset. She felt like the hospital was just going to let her die—like they didn’t care anymore what happened to her. She was horrified that they would do this to her. Unfortunately, this was her first taste of how the medical field fails people with disabilities, but surely it won’t be her last.

Because no one could prescribe an antibiotic without infectious disease’s approval, and because Grace can’t stop taking antibiotics entirely with an infection that bad (that WOULD be a death sentence!), I asked the ER doc if I could give her the three meds that had been working before ID screwed with them, and we could follow up with ortho in the morning to see if they would do the procedure outpatient. The ER doc said that sounded like a good plan and assured us that ortho would do it within the next couple of days. (I knew better—no one at that practice will touch Grace except her regular doc who is out—but the ER doc was convinced.)

Around 11:15 that night, we left the ER and came home to sleep in our own beds. There are many parts of that sentence that make me feel grateful. I did not want to be away from my children and animals and home and food for several days, but of course I’ll do anything for Grace if it’s necessary. Grace was not as happy; hospital stays are mommy-daughter time and she cherishes that.

The next morning, I debated whether to call ortho, knowing in my heart that they weren’t going to do anything. At about 9:30, ortho called me and told me that J was going to see Grace at 3:15. I asked, “Will she do the biopsy?” and the person on the phone assured me she would do whatever it takes. We decided to visit the splash pad that morning. At this point, without being under a doctor’s care for this infection, we might as well just live our lives and enjoy the time away from the hospital. We splashed and frolicked in the sun, then came home at lunch time and got ready for the appointment. Grace was worn out from an hour and a half at the splash pad. She is clearly not 100 percent—her stamina just is not there. But we hustled out the door anyway and arrived at our appointment a few minutes early.

Not too long after our scheduled appointment time, we were taken into a room. J came in. She is a PA that we saw first during our 2019 disaster, and she instantly recognized Grace. She explained that she had been the person who had talked to the ER doc the previous day—six times. She also explained that Grace’s regular ortho and another ortho in the practice had discussed Grace extensively and decided that no one should cut on the bad finger in fear of making it worse. She was explicitly told not to do anything, and as a PA she could not disobey those orders.

I don’t even have words to express how frustrating this was.

I tried to reason with her, that all we wanted was medical care for the child in the room and no one was giving it to us because the doctors were all too busy fighting amongst themselves. She said, “I’m frustrated too. I spent hours on the phone yesterday and yet my hands are tied.” I tried to be polite to her, to be nice, while feeling extremely let down and frustrated, but Grace did not try. She said, “I want to punch a doctor in the face,” prompting me to have to scold her and say “We can’t say that here!” God forbid they refuse to see us in the future because Grace became violent. I told J, “It feels like you’re saying your practice doesn’t want to care for Grace anymore.” She said no, that’s not true, but they can’t do this thing this time. She eventually left to get the other doctor who was supervising her. (Grace later said she couldn’t decide which doctor to punch. I can’t say I blame her. They are all failing her at this point.)

The other ortho doctor was very nice, very charming, and he did nothing. He did ask what antibiotics Grace was taking and I told him that since no one would direct it I was giving her all three meds that had been working. He said, “That’s good, that casts a very wide net. Keep doing that.” So, although no one can officially prescribe anything, now two doctors have told me that what I’m doing is a good idea. I guess that’s better than nothing? Sure would be nice if the doctor in charge of medication management would fricking intervene. He also said that he would have to leave this up to Grace’s regular ortho and was not comfortable doing any debridement or anything else for Grace due to her complexity. He mentioned that he thought Grace’s regular doc was in the office the next Tuesday and they’d be in touch, then left the room.

Leaving the ortho appointment, both Grace and I were extremely upset and frustrated. Grace again felt like the doctors were abandoning her, like they didn’t care whether she lived or died. At that point, we both needed something to make us feel better in that very moment, so I decided to take Grace clothes shopping. She’s my not-so-little-anymore fashionista and she loves clothes. We hit up Forever 21 and bought her several new outfits, and she was giggling and having a great time. I still felt like I could cry at any second, but seeing that Grace felt better was a huge relief.

At this point, although I know the ID doc is a good doctor and is smart, she’s my choice for who needs to be punched in the face first. She is causing a ton of problems for us and is alienating us from other doctors and practices. Even though what she’s doing is a best practice for ID, it is a worst practice for the actual patient in front of her, and maybe if she were willing to see Grace in person she would be reminded of the face behind the chart.

Since we are now going rogue with no official medical treatment, I decided that we should just continue with our original plans for my week off work, and we went swimming Friday. Normally pools are extremely scary, because other people’s bacteria are in there (including poop bacteria!) and chlorine doesn’t kill everything. At this point, though, if Grace got worse she would be admitted and the hospitalist would have to intervene, and with the three antibiotics she’s unofficially taking, she is likely covered for most infections anyway. And, as long as the pool doesn’t have very many other people in it, the chlorine is a good cleanser for the rest of her wounds. Sometimes you have to weigh your choices and choose the one that is going to give you the most life. On Friday, that was a visit to the local swimming pool.

It’s now Sunday and Grace’s fingers are doing much better. She is still low energy, but all in all she seems to be recovering. We have not heard from ortho again and I don’t know if they will call us. I am so frustrated with all of the doctors and don’t want anything to do with any of them—we’ll keep going until one of the prescriptions runs out, and then we’ll evaluate whether Grace needs continuing treatment at that time. We are on our own for now.