Ah, the life of a chronically ill person. We spend our days dealing with doctors and insurance companies and therapists and special teachers, and even if these people are not pleasant or do not do what we need them to do, we are basically stuck because of the way the system works. It’s not like you can shop around for a better TVI in the public school system, and there may not be any other options for specialist doctors—like in pediatric infectious disease—because some specialties are extremely niche and you pretty much have to keep all the main specialties at the same hospital so they’ll all work together (theoretically).

A few days after our horrible ER experience, Grace’s pediatrician reached out to me to ask if I was satisfied with the care Grace was receiving from infectious disease. I relayed that no, I was extremely frustrated, but did not know what other options we had since we had such bad experiences at Children’s Hospital. I had started to think that perhaps we could get the adult infectious disease doctors to see Grace. After all, she’s almost 12 now—not the 5-year-old they saw in the interim when our best doctor ever left the hospital. But I knew it was unlikely they’d see a pediatric patient when there was a pediatric infectious disease specialist in the same hospital. Grace’s pediatrician encouraged us to try Children’s again, but I hesitated, remembering all the times that hospital and its doctors had failed Grace.

Grace had wanted to punch a doctor in the face after our experience, as she so bluntly relayed to the ortho PA. I’m not much of a puncher, myself—I’m a writer. The pen is mightier than the sword, and all that. So, after gathering my thoughts for several days, I wrote this email to the infectious disease doctor, to be conveyed by her medical assistant:

We are not satisfied with the lack of care Grace is receiving from Dr. —. Dr. — has never even met Grace in person or seen her wounds with her own eyes. She has repeatedly been unavailable when we have needed her, including during regular business hours Monday through Friday. She is currently refusing to direct antibiotic management for an infection that does not require inpatient IV therapy, leaving Grace with no one to help her. She expects another practice to do what she will not do—see Grace in person and culture a wound—putting an 11 year old patient in the middle of a doctor war. She is unreasonably denying care to a patient who needs her.  

We are at the point where the ER at Dr. —’s own hospital suggested we transfer Grace’s care to another hospital entirely because of Dr. —’s lack of treatment. Grace’s various therapists and other physicians are also advocating that we transfer her care—when there is only one person causing problems for us. We do not want to leave the hospital that has helped us for many years, but will have no choice unless Dr. — can start treating her patient, an 11 year old child with a chronic medical condition who requires regular care and attention from infectious disease.  

Dr. — needs to step up and provide adequate—or exceptional—care to her patients. She needs to be available during business hours without fail, or have a backup arranged if she is on vacation or out of the office. She should have an adequate plan for after-hours care for all of her patients as well. Leaving  patients in the lurch because the doctor does not want to work is unacceptable. Telling patients to find a new hospital because of one rogue doctor is unacceptable. Requiring ER and orthopedic doctors to spend literal hours on the phone because ID will not do the job herself is unacceptable.  

Grace is running out of antibiotics and needs care immediately. If Dr. — will not provide that care, we will have no choice but to go to an entirely different hospital—which is NOT in Grace’s best interest. Dr. — needs to do the right thing and care for her patient.  

Thank you. 

It’s harsh, I know. I felt bad for the medical assistant who received the email and had to pass it along to the doctor. As Chad quipped, her jaw hit the floor when she read that.

Days passed and I heard nothing from the doctor. I had resolved myself to contacting Children’s Hospital after all, and actually even made a phone call to make an appointment there. Then, as so typically happens in medicine, where nothing happens for a long time and then suddenly there is a flurry of activity all at once, the Children’s Hospital infectious disease department called me back and said they wouldn’t see Grace without a formal referral from her doctor. Before I could get that referral, though, I received a call from Dr. — herself.

At first, Dr. — simply presented her viewpoint in a clearly well-rehearsed speech. After some time, though, she and I had a lively discussion about the efficacy of certain antibiotics for Grace, and when or whether inpatient IV therapy was needed. We spent almost an hour on the phone that day, going over everything in the nastygram I sent and with Dr. — explaining her perspective. In the end, Dr. — agreed to see Grace in person the next business day (which was the Tuesday after the Fourth of July).

When we got to the appointment, the MA who had received the email was syrupy sweet. She must hate me, honestly, after all that. Despite a comment or two about how they don’t see patients in the office usually, nothing really happened. Then, a hospital social worker came in the room.

Of course, I was immediately suspicious. Why would a social worker be there? Quickly, though, she explained her purpose. Apparently Dr. — had asked her to come feel out how Grace was feeling after the disastrous ER visit. We spent some time chatting with the social worker, then the doctor came in the room. The social worker stayed. Perhaps Dr. — had wanted a witness, but it was unnecessary. As I said, I’m not the punching type.

Dr. — made a plan to switch Grace to a different antibiotic so she would only be on one drug and not three. She said the name of the antibiotic but I didn’t understand her at first because she has a thick accent. When she said it again, I said, “Oh, Linezolid. Grace has had that one many times. It’s a good drug and it works really well for her. The only problem is her white count drops very quickly.” Dr. —‘s brow furrowed as I said this, and she asked, “Yes, in a couple weeks, correct?” to which I replied, “No, last time she had it it was 2 days before her white count started dropping.” Her face fell. But, she continued with her plan, adding on the requirement that Grace get weekly blood work to keep an eye on her counts.

To be honest, I was skeptical that switching to another med would do anything other than cause worsening, as had happened with the other three times Dr. — had switched the meds. But it seems to be helping, astonishingly. Grace’s finger showed improvement the very next day after switching, and the other areas of infection on her body also seem to be improving. Thank goodness.

When you live this life, you cannot become complacent. There will not be a point where I stop assessing the wounds or stop evaluating Grace’s energy level. But maybe, just maybe, we can take a deep breath now and move forward with the hope that Grace is FINALLY on the path to healing.

And maybe, just maybe, this will get through to Dr. — and she will finally start to treat Grace as an individual who does not react to infections or respond to treatment like the textbooks say she should. We go through this with every single infectious disease doctor, this training period, and hopefully this will be the last major hiccup with this doctor before she truly learns that she can’t treat Grace the same way she treats everyone else.

Grace is one in a million after all—she’s amazing.