Thankful for quick recovery from SJS
by James Phillips
Jan 11, 2013 | 1672 views | 0 0 comments | 13 13 recommendations | email to a friend | print
James Phillips
James Phillips
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Have you ever heard of Stevens-Johnson syndrome?

I hadn’t until a couple of weeks ago when I found myself inside the emergency room at Children’s Hospital in Birmingham.

Earlier that day, my 5-year-old daughter, Daisy, began screaming uncontrollably, saying her nose and mouth were “on fire.”

I was at the Daily Mountain Eagle when I received a call from my wife, Andrea, and I could hear Daisy screaming in the background. Out of our four children, Daisy is the most laid back and the least likely to scream over anything, so I knew something had to be wrong. Two weeks earlier, I had received a similar call from Andrea that Daisy had cut her foot open and they were headed to the ER, and you couldn’t hear a peep from the 5-year-old, but this time, she was wailing.

Thinking we would be headed to Children’s Hospital, I rushed home while Andrea called our pediatrician. The nurse told her it probably wasn’t anything but some soreness from a cold and said we should just watch her close through the evening. I knew it had to be more than a cold, but Daisy had calmed down, so I returned to work.

About five hours later, I got another call from home. Daisy was now running a high fever and had a rash across her entire body. Andrea was on her way to the emergency room, and I left to meet her there.

When I arrived at the ER, Daisy was already in a triage room — she was fairly lifeless. Her pink rash was turning into a red rash, and her eyes were so red it has passed the point of bloodshot. A few moments after entering the room, I asked Daisy if she wanted Daddy to lay by her on the hospital bed. She said “yes,” so I laid down beside her and put my arm around her. I said a simple prayer in my head and we waited on the doctor to arrive.

Andrea and I had no idea what was going on with Daisy, but thankfully the doctor at Children’s had seen these symptoms before.

He explained to us that Daisy had Stevens-Johnson syndrome, which is a rare, serious disorder in which your skin and mucous membranes react severely to a medication or infection. The disorder begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters, eventually causing the top layer of your skin to die and shed. SJS is extremely rare, Children’s only sees two or three cases per year, and Daisy was the only child in the hospital at that time who was suffering from the illness. The doctor prepared us that Daisy could be hospitalized for anywhere from several days to several weeks.

After hearing the news, I sent out several texts to folks, and the response I got back wasn’t very uplifting. Friends and family Googled SJS and found some pretty terrible stuff online.

It was determined Daisy came down with SJS after taking Bactrim — an antibotic she was given two weeks earlier when she received stitches for the cut on her foot.

The doctor was optimistic that we had caught the disorder at an early stage, but he said the only thing they could do was give Daisy fluids to help keep her hydrated.

Daisy says she doesn’t remember anything about that night in the ER. Her first memories are being moved via wheelchair to a room in the hospital. Once in a room, I took to Facebook to let friends and family know what we were going through.

I was completely and totally overwhelmed by the response to Daisy’s situation.

People from all over were sending out their prayers, well wishes and positive vibes. Many of those folks were friends and families, but there were also many of our Daily Mountain Eagle readers who sent messages to us through Facebook.

For the few days that we were in the hospital, we received countless calls, texts and messages from people. There were also a few people kind enough to bring food and other items. We’re so thankful for everything.

Despite the fact that SJS can lead to terrible things, such as blindness or even death. Daisy was only at Children’s Hospital for three days.

Her condition never reached an extremely serious level, and doctors and nurses were shocked that it didn’t progress further than it did. Everyone agreed that getting to the hospital as quickly as we did was a key to her fast recovery.

Children’s Hospital is somewhere you never want to be, but once you are there, you are thankful it exists. The doctors and nurses at the hospital are outstanding and Daisy received the best care possible.

On the day we returned home from the hospital, Daisy asked how many people had been praying for her. I told her that I didn’t think there was any way to count. I told her that I thought the number was somewhere in the thousands. She responded with, “That’s a lot. I thought seven.”

Our family wants to thank everyone who did send a kind word or passed along a prayer for Daisy. The situation could have been so much worse, and I honestly feel the love that was shown to us was a big reason for why Daisy made it home in a few days instead of a few weeks.

James Phillips is Editor of the Daily Mountain Eagle. He can be reached at 205-221-2840 or james.phillips@mountaineagle.com.