Burned

We parents of special needs kids are frequently plagued by burnout. I just read a post on “Love That Max” today about a special needs mom’s head exploding. It was tongue-in-cheek, but quite appropriate. My head feels explosive today—or maybe it feels like it’s already exploded, like there’s nothing left.

Gracie and I came home yesterday afternoon. I am glad to be home, but so apprehensive about how the hospital stay ended.

Yesterday morning, the pediatric infectious disease doctor visited us, informing us that Gracie’s CRP and sed rate were normal so she could not have had an infection. I told him that she has had terrible infections before with normal blood work, but he said, and I quote, “inflammation is different from infection.” This ID doc is relatively new to the hospital, so he was not there in August 2014 when Gracie had a bad infection that streaked halfway up her arm—her blood work was normal then, too. It perplexed her then-ID doc, but the doc didn’t stop treating her. (THANKS for that, Dr. D. Miss you so much.)

Meanwhile, the nurse and the floor’s charge nurse were trying unsuccessfully to start a new IV. They tried three times before the ID doc came in; he told them to stop because Grace could just have oral meds. Oral meds = no need for us to stay at the hospital.

Right after the ID specialist left, the floor doc came in. Again, the floor doc is someone who has never worked with us before—he has seen us there, but never been the doctor assigned to our case. He was very careful not to use the word “infection” in his short conversation with me. He talked about switching Grace to oral antibiotics and getting her discharged “because he could not justify the hospital stay.” I tried to reason with him and watched him bristle at being questioned. Yet another doctor let ego get in the way of patient care yesterday.

Chad happened to be at the hospital through all this, although I don’t think he was aware of the significance. I cried on his shoulder, and decided that I wanted to try to talk to the doctor one more time. We need this hospital. And it makes sense that a doctor who has seen lots of kids with infections in his career would not automatically believe me that Grace is different—Grace doesn’t follow the rules. But I don’t know what I can show them to prove that I’m telling the truth, I’m not just a hysterical overprotective drama mama, if they won’t even believe their own records from a previous hospitalization.

I did speak to the nurse later. The floor doc was literally in the office right next to where we spoke; I know he heard every word. I tried to make the point that Grace is different, that she’s had terrible infections with normal blood work, and she looked in her computer and verified what I was saying. Even so, after that conversation she treated me differently. She was cold, not as nice, obviously careful and guarded. Guess it makes sense… she has to do what her boss, the doctor, wants her to do, regardless of what I say.

I am so tired of this. I am so tired of having these conversations. I’m so tired of worrying about whether Gracie’s care will be affected—if the doctors will not take her infections seriously now unless she is extremely sick, if the doctors will automatically disregard what I say because I’m “that” mom.

Gracie could have probably benefited from one more day of IV antibiotics, but I didn’t fight for it. Luckily, her hand looks a little better today—the swelling is down, the redness is down, the wounds are healing. It worked out okay this time, even though I didn’t fight.

I don’t want to fight. I don’t want to be labeled as confrontational. I don’t want any of this—I just want my kid to get better. I don’t want to have to choose words that will soothe a doctor’s giant ego just so he will listen to me. I don’t want to have my child suffer because a doctor is going by what he’s seen his entire career—even though he’s never seen Gracie before and has never seen anyone with her disease, either.

I am so tired of all of this.

This is basically the same reason we stopped seeking treatment at Children’s Hospital. I lost the fight that time—the infectious disease specialist didn’t like it when I questioned her treatment plan, and she wrote nasty things about me in Gracie’s chart. Nasty untrue things. Nasty untrue things that will be in Gracie’s chart forever, that will affect Gracie’s treatment at that hospital for the rest of her life. I can’t let that happen again. That’s why I tried to talk to the nurse yesterday, tried to explain my viewpoint. It didn’t work, though—she was decidedly cold to me for the rest of the day.

I am tired. I don’t want to fight. All I want is for my child to get the best possible care. Is that too much to ask?

Apparently it is.

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