Children’s hospitals can do better

November 6, 2011

an old neon sign pointing the way to a Children's Hospital

image courtest of roens, via flickr

It seems like every time a children’s hospital gets mentioned in conversation, someone has to talk about how wonderful they are, how they save kids’ lives. Well, of course they do, it’s their job. But like healthcare in general in this country, children’s hospitals need to do better.

I have several horror stories from our local children’s hospital. There was the time our doctor’s face turned white when he realized a nurse had put the wrong medication in Chloe’s IV. The time we spend 8 hours in the waiting room with a six-month-old whose head was covered in EEG wires, only to find out the wait and the wires were a mistake. And the time a neurologist assured us that one of the benefits of Chloe’s seizure medication was that she would swell up so much that our underweight daughter “would look fat.”

But one instance made me really understand the pitfalls of American healthcare, even when it’s in a hospital covered with bright colors and cartoons.

A couple of years ago, Chloe had a huge seizure that took a long time and a lot of drugs to get under control. In the emergency room of our suburban hospital, the atmosphere was of controlled chaos and supressed panic, especially when the doctor couldn’t find the right size tube to intubate her. Her oxygen level was dangerously low, and he finally decided to put in a tube that was slightly too small rather than deprive her of oxygen any longer. Then it was off to the Children’s Hospital.

There, the doctors explained that, while she no longer needed to be intubated, they wanted to leave the tube in for a few more hours, because they wanted to give her an MRI (because of past breathing issues, Chloe has to have a breathing tube when she is sedated for procedures like MRIs).

So the tube stayed in. And it became a concern to every nurse and respiratory therapist we saw, because it was too small. Air was leaking our from around it, making some machine beep all the time. Everyone told me it was no big deal, but they couldn’t stop looking at the numbers on the machine and discussing it among themselves. In addition, nurses were having trouble suctioning the tube–getting the mucus out of her lungs.

After several hours of this, we got the MRI. I had been tempted to refuse it, simply because it seemed like one of those expensive, unncessary procedures that hospitals are notorious for insisting on. The doctors explained that they wanted to check and make sure there wasn’t a new problem in Chloe’s brain that had caused the seizure. But there were already plenty of reasonable explanations:  Chloe has a brain injury and a history of seizures, and at the time of this seizure she had a very high fever.

I wanted to say no, but in that atmosphere, it was hard. How would I explain to the doctors and our family that I didn’t want to do everything they thought was necessary for my daughter? That I wanted to save taxpayer’s money (Chloe has Medicaid) rather than get a test they said she needed? So I kept my mouth shut, not realizing at the time that there were better reasons than money to refuse the test.

Hours later, after the MRI, the tube came out. Chloe wheezed and gasped, and it took several doses of steroids to calm her breathing. The respiratory therapist theorized that the smaller tube may have caused inflammation by moving around too much, and I realized we should have gotten that tube out hours before.

After a couple more days in the hospital, they sent us home. Chloe still had a high fever, but now we had seizure medication and an emergency dose of Valium to stop a big seizure–which I had to know to ask  for, since it wasn’t offered to us.

Hours after we returned home, Chloe had another seizure. We gave her the Valium and called an ambulance. At the hospital, she was diagnosed with pneumonia, and the doctor explained that it had several possible causes, one of them being the intubation.

The combination of seizures and pneumonia started a muscle spasm that racked her body for days, and when that finally ended, she had a sinus infection so bad she could hardly breathe. In all, she was very sick for an entire month.

Did that tube cause the pneumonia, and subsequently the second seizure, muscle spasms and sinus infection? I have no idea. But I do know that the MRI didn’t give us any new information, cost taxpayers thousands of dollars, and came with risks, like pneumonia from leaving the tube in longer, that were not discussed with us beforehand.

Yes, our children’s hospital save lives, but every time we’ve stayed there, we’ve been subjected to questionable procedures, thoughtless remarks, and just plain stupid mistakes. Children’s hospitals can do better.

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One Response to “Children’s hospitals can do better”

  1. yannashumaker Says:

    Wow. That episode sounds like a real nightmare– well done to you all for surviving it, and even more for being able to share it so clearly. I am sitting here so full of admiration for you and Chloe.


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