A Mother’s Argument for Patient Self-Advocacy in Rett Syndrome Using an Eye-Tracking Communication Device

Kalika using her eye-tracking augmentative and alternative communication (AAC) device. Photo courtesy of the author.

I jerked awake at 1 AM to the sound of frenzied footsteps and insistent beeping in my five-year-old daughter Kalika’s hospital room. She lay in deep slumber, recovering from gastrostomy surgery. Two nurses hovered at the foot of her bed with deep frowns and voices betraying concern. Kalika’s blood pressure had plummeted alarmingly, and she appeared unresponsive.

After several minutes of prodding, she opened her eyes. The head nurse turned to me and said, “We need to see if she’s alert. Can you get her to respond on her device?”

I nodded and grabbed Kalika’s eye-tracking communication device. Holding the device over her, I asked her how much pain she felt. Kalika scanned the “Pain” page in her speech software and said: “Some pain.”

The nurse turned to me and said: “Can you ask her another question? Ask her how she feels.” I flipped to the “Feelings” page and asked, “How do you feel?” Kalika surveyed the screen and said: “Tired, tired.”

Satisfied that Kalika was in fact responding appropriately and consistently, the nurse said, “We’re good. Great job!”

Incorporating patient […]

2022-02-17T10:51:23-05:00February 17th, 2022|Nursing|0 Comments
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An Impromptu Code Team on the Rugby Pitch

Eighteen months ago, I wrote about my experiences being a COVID-19 ICU nurse during the height of the pandemic, while also training as a member of the USA Rugby Women’s National Team. I focused on the connection between nursing and rugby by discussing the importance of the backline of defense in both the hospital setting and on the pitch.

Much of what I wrote there was driven home for me in a new way one day last fall at a local rugby field in New Jersey. It was a beautiful fall day and I was spending my last weekend home watching my brother’s playoff game before I would be heading to Colorado for a set of international rugby games with Team USA.

Credit: KJ Feury.

It was a typical men’s club division 2 playoff game, where the score was back and forth, and big plays were being created by both teams. It was nearing the end of the game when the away team had a scrum in their half of the field. Their #12, a player who had been making big hits and runs all game, made the decision to kick the ball out of their half to relieve pressure and reset play.

After the rugby […]

2022-02-15T08:54:27-05:00February 15th, 2022|Nursing|0 Comments
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A Small Gesture of Kindness

Illustration by Janet Hamlin for AJN.

In our January Reflections column (free until March 1), “Just One More,” a nurse shares her memory of a family facing one of the most painful experiences imaginable—the death of a child.

In a situation like this, there is so little that can be done, and the usual gestures of expressing condolences or giving a pat on the hand feel inadequate and hollow.   

She writes:

“I knew that no words could lessen the unexpected heartbreak . . . But still, I wished there was something I could say, or do, that might make a small difference.”

Small gestures, lasting effects.

Most nurses can relate to such a situation. You may not be able to do anything to change a patient’s circumstances, and all you have left in your arsenal of care is a small gesture of kindness. […]

2022-02-11T09:39:23-05:00February 11th, 2022|Nursing, pediatrics, writing|0 Comments
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History Is What We Make It

February is Black History Month—officially observed as such by President Gerald Ford in 1976, America’s bicentennial year, to celebrate the contributions of Black Americans to our nation. It began as a week of remembrance established in 1926 by Carter G. Woodson, founder and president of the Association for the Study of African American Life and History. He chose the second week in February because it coincided with the birthdays of President Abraham Lincoln and Frederick Douglass, the former slave who became a famous orator, author, and abolitionist. Later, in 1986, Congress designated the month of February as “National Black History Month.”

I didn’t know about the origins of Black History Month until I was preparing this editorial. This made me wonder about the many other things I wasn’t aware of concerning the history of Black Americans in this country. It wasn’t until last year, on its centennial, that I learned about the massacre that destroyed the Black community in Tulsa, Oklahoma, in 1921. And it was only in the last few years that I learned about the Tuskegee syphilis study conducted by the U.S. Public Health Service from 1932 until 1972. (Yes, 1972!) In this study, originally known as the “Tuskegee Study of Untreated Syphilis in the Negro Male,” participants with syphilis were not […]

2022-02-09T14:26:55-05:00February 9th, 2022|Nursing|1 Comment
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Column Spotlight: Learning to Be Strip Savvy When Reading ECGs

“In my experience, many nurses working outside of critical care haven’t had a lot of training in reading and understanding basic ECGs.”

Have you ever learned something new and thought to yourself, how did I miss this? Why didn’t I know about this sooner?

Now more than ever people are finding information by searching for it on their own. The days of reading a print journal cover to cover are, for the most part, behind us. Many readers find articles by searching for a specific topic of interest. While this approach can be useful, you risk missing out on all that rich content in a journal issue you didn’t know that you needed to know.

One of AJN’s great features is our broad coverage of nursing topics.

We intentionally put together each issue to bring nurses the information they need to stay on the top of their professional game. For this reason, I like to highlight our columns here every now and then. (See, for example, my spotlight on our Nursing Research, Step by Step column).

Another great column nurses might be missing out on is Strip Savvy, written by Nicole Kupchik and Joel Green. This month’s installment, “A Case of an Asymptomatic Older […]

2022-02-02T10:18:08-05:00February 2nd, 2022|Nursing|0 Comments
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Views expressed on the blog are solely those of the authors or persons quoted. They do not necessarily reflect AJN’s views or those of Wolters Kluwer Health/Lippincott Williams and Wilkins.
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