Our New Normal – Part 2

I write letters to Ellen DeGeneres. No particular reason. Just because I can.

“With a curve this large, we need to make sure everything else inside is developing normal.”

Dear Ellen,

Imagine sitting in a specialist’s office and being told there’s a possibility a curve in your infant’s spine could be affecting how her major organs are developing. It sucks. But how I felt about it didn’t matter. The results of the upcoming tests did. The pediatric orthopedic doctor told me she was going to need an ultrasound, an MRI, and cardio consult.

He was quick to tell me that the cardio consult was just a routine procedure and that if she had any problems with her heart, we would’ve known by now.

The ultrasound and MRI both required her to fast. Technically she wasn’t allowed to eat or drink anything after midnight but because she was on formula, they said she could have a bottle as long as it was before 7 a.m. Her first appointment wasn’t for several hours after 7 a.m.

The person doing the scheduling was both smart and very thoughtful. He made sure her ultrasound and MRI were scheduled for the same day so we wouldn’t have to go through the fasting twice. The appointment was made for a few weeks later. In the meantime, we went about our normal, non-chaotic lives with three kids.

 

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The day before her scheduled MRI and ultrasound, I noticed a rash on her butt and legs. The last time she had a rash like this one, I thought it was just a rash. It turned out it was hand-foot-mouth disease. Can a child with HFM (a highly contagious, very annoying virus) get an ultrasound and MRI? It was a very good question. I made an appointment to get her seen at the pediatrician. Her pediatrician couldn’t see her so I made the appointment with someone else in the practice – who, as it turns out, was a very new doctor.

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That meant I had to explain the rules.

“She has an MRI tomorrow. So I need to know what I’m dealing with. Is it HFM disease? Or is it contact dermatitis?”

The doctor took a look at the rash. “Well I think it’s contact dermatitis but it could also be [scary medical terminology I don’t understand a word of] ….that could indicate something much more serious.”

“No, no. no. You misunderstood,” I began. “There are only two choices. Option A: Contact Dermatitis. Or option B: HFM. There is no third option for something I can’t pronounce that could indicate something even scarier because tomorrow they’re going to sedate my child to find out if her scoliosis is screwing with her major organs. So as far as fear and anxiety go, I’m maxed out.”

“I think it’s just contact dermatitis but let me pull another doctor in here for a second opinion.”

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“Sounds like a plan.”

Both doctor’s agreed it was contact dermatitis. That meant she could have her ultrasound and MRI. In case you might inquire, had she had HFM, she would not have been able to have either of these two exams until the virus cleared up. I had mixed feelings about this. On the one hand I was very stressed about making her fast. On the other, she can’t be treated for her scoliosis until they know what exactly they’re dealing with. And, they don’t know what they’re dealing with until she has the MRI and ultrasound. A delay in either means a delay in treatment. Even though I don’t want to put her through the next 24 hours, it was really important she made those appointments.

The next day was a really long day but we both survived it. And then we waited to hear from the pediatric orthopedic doctor who was supposed to call within 48 hours to schedule an appointment so we could discuss the results of the MRI and the kind of treatment she required. That meant I should’ve heard something by Friday. Friday came and went, I heard nothing.

I called Monday morning. The nurse I spoke to said she’d have to call me back. Okay. It happens.

Tuesday – nothing

Wednesday – nothing.

Thursday & Friday – nothing.

During this time, life happened and I lost track of how much time lapsed between Monday morning and the rest of the week.

I called back the following Monday. The nurse I spoke with told me the doctor was on leave for six weeks and unavailable to see my daughter. On leave? For six weeks? Seriously? They wanted me to wait six weeks to find out what the results of the MRI were? And where the hell does that doctor get off taking leave when my kid needs medical treatment? What? Did he just wake up one day and decide he was going to be a human in need of a personal life? Can’t that shit wait until my daughter doesn’t need medical treatment?

“Let me ask you something. Are there any other licensed pediatric orthorpedists at that office?”

“Yes. Of course.”

“Do they accept my insurance?”

“Yes.”

“Do they know how to read an MRI?”

“Yes. Of course.”

“Great. Get me into see one of them.”

Honestly, Ellen, I shouldn’t have to work this hard. But I did. We got an appointment within a week to see a different doctor. The doctor who was supposed to see my daughter after the MRI was the surgeon. The doctor I got into see was the first pediatric ortho doctor who ordered all of the tests. He was not a surgeon. But he was skilled at reading MRI’s. So there’s that.

“The good news is, with the exception of her scoliosis, everything is developing normal.”

 

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 “Great. Where do we go from here?”

“Unfortunately, she will need a cast. The problem is that there was only one surgeon at this hospital able to put a cast on a child this small and his employment at this hospital ended recently.”

“Was that the doctor who I was told went on leave?”

“Yes. He went on leave and then his employment ended.”

I didn’t ask why. Even if I had, for legal reasons, I’m sure he couldn’t tell me. Needless to say, the surgeon’s employment ended under very abrupt circumstances. I sincerely hope if he was fired – and for the record I don’t know that he was – that he was fired for doing something white-collar stupid, involving paperwork, and that it was not surgery-room stupid.

“So where does she go to get her cast?”

“We’re referring all of our patients to the Children’s Hospital of Atlanta.”

 

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This is the second in a four part series on our new adventures with my baby’s scoliosis treatments. The entire series can be read by following this link.