Dear Intermountain Healthcare,
Over the last two years we’ve become frequent fliers at your hospitals. Our daughter has an undiagnosed Leukodystrophy and, as such, reacts abnormally to or has a difficult time fighting off the variety of ailments that beset her. She is tube fed, immobile, and unable to speak. A week ago we were on a family vacation in Idaho and she became very sick. She began vomiting frequently and couldn’t retain the smallest amounts of liquid. Her skin felt hot and she appeared extremely lethargic. We took her to the IHC emergency room in Burley, ID to get her the help she needed.
Three times while in the emergency room we recounted the events that had occurred leading up to our arrival and the history of our daughter’s Leukodystrophy. Eventually tests were ran which showed low glucose levels and an extraordinarily high heart rate — both symptoms of dehydration. She was given fluids and glucose to a point where she seemed to be responding well enough for us to cut our vacation short and make our way back home. They directed that if there were any problems in the meantime to be sure to take her to the nearest emergency room.
The trip back home is approximately four hours. During the trip home she moaned in a way that seemed to express pain but we figured it may be a result of the trauma she had endured over the past day. When we got home, she was acting very similar to how she was before we took her to the hospital earlier. She was very unresponsive and resisted opening her eyes or making any movement. When we tried giving her a few drops of water in her mouth using a wet sponge she immediately vomited. Again her heart rate was elevated and her skin felt hot. It was obvious something was wrong and she needed liquids fast. We rushed to the IHC emergency room in American Fork, UT about five minutes away.
The lobby was empty and it did not appear as though many, if any, patients were being attended to within the ER. I showed the secretary our unresponsive daughter and requested that fluids be provided quickly and that we already knew she was dealing with dehydration. Again we were asked to explain the events that had occurred — not only since our trip to the IHC hospital earlier in the day but also the events previous and the circumstances surrounding her Leukodystrophy. We were asked to explain the same to the nurse who took her vitals, weight, etc. Ten minutes had passed and no liquids had been requested.
We were brought back to the emergency room where a different nurse cheerfully chatted with our newborn son who we had brought in the car seat, asked what his name was, and when he was born. By all means, she had a heart of gold and I would love to bring in my photo albums so she could get acquainted with my family tree, but my daughter continued declining and, as though I should have to point out, we’re in the emergency room! Again, we were asked to recount the history of events and details of her Leukostrophy. We made sure this nurse, too, was aware our daughter needed liquids ASAP.
Twenty minutes into our hospital visit the doctor came in. Again we were asked to recount the history of events and details of our daughter’s Leukostrophy. A half hour had passed since we entered the emergency room and no fluids were to be seen. On the flip side, I was able to partake in the reminiscing of recent class reunion hilarity that ensued at the nurse’s station while my daughter continued on the decline. Nay, not only that, but I was able to graciously provide my credit card to pay for care we had not yet received, look for insurance cards that turned out to already be in the system, and for the fourth time answer such urgent and diagnostic questions as “And who’s your employer?”
I pitched a fit. I made a scene. I’m sincerely not one to get upset easily or desire to make any sort of disturbance especially in a place of healing. But that day I did everything in my power to ensure your employees knew we were in an emergency room and there was an emergency to be treated. The doctor’s response: “Your child isn’t going to die if we don’t give her fluids right away.” Is that so? Were those your findings the last time you treated an undiagnosed Leukodystrophy patient suffering from severe dehydration the previous doctors thought they had under control? Why are we in the emergency room at all then? Who cares if her energy is sapped to render her unable to avoid aspirating her own vomit? Who cares if her system continues shutting down or her body starts eating away the little muscle she has. Send us home with a bottle of water or maybe I can call in my extended family and we can all kick back and talk about who our employers are! Hell’s bells — I’d venture at least 95% of the people going into the emergency room wouldn’t die if we sat on our hands for a while. Let’s all go have a coffee break, shall we?
After finally getting her hooked up to fluids and reviewing some of her tests she took an ambulance ride to the IHC Primary Chidren’s Hospital in Salt Lake City, UT. We repeated the routine. Two more times we described the events. Two more times we gave the history of her Leukodystrophy. Two more times I answered who my employer was and a handful-dozen other questions I had answered several times previously that same day. Our daughter was hospitalized for three days following to be treated and recover from what appeared to be an intestinal virus.
I realize this may be entirely ignored or we may be discredited as over-dramatic parents. Or, on the other hand, you might consider the improvements that could be made, a higher standard that could be achieved, or that patients might be able to arrive at your hospitals with the expectation of timely treatment and professional service.