Yesterday I received my medical records from my postpartum hospital stay in January this year.
I make a point of requesting copies of my records. Too often have they been misplaced or lost by medical providers over the past. The first time this happened, I was a tender 18 years of age and in hospital, totally paralyzed, with Guillain-Barré Syndrome. I had a tracheotomy performed, as I needed to be put on artificial respiration. The first tube they used was a size too small for my throat size, so a couple of weeks later they had to change the tube for a larger size. Since this did not require an operation, it was done in my room in the ICU by the nurses. My parents waited outside for what should be a very quick procedure - they had been told their wait would be 15 minutes, maximum. They ended up waiting for hours, not knowing what was happening. Their anxiety was not relieved when finally, a nurse burst through the doors and said, "That was close!"
(That scene wouldn't be out of place in an episode of House.)
After they had changed the tube, the ventilator was not inflating my lungs; the air was going into my stomach instead. The nurses tried inserting the tube five times, but each attempt was unsuccessful. They called over the ICU doctor who manually inspected my throat, finding a hole where none should be. There was a tracheoesophageal fistula (a hole between my trachea and esophagus that made it impossible for the machine to properly work. On one side it was 1 centimeter long, on the other side a whopping 3 centimeters. They inserted a larger tube through my mouth and manually pumped air into my lungs as they rushed me to emergency surgery.
(That scene would be *perfect* for an episode of House!)
Finding out what happened was difficult. The hospital staff led us to believe that the initial damage was done by the surgeon who originally performed the tracheotomy, and had been masked by the placement of the first tube.
Our requests for apologies and further information were met with evasiveness. I could tell something was not on the up-and-up. I was paralyzed, not stupid! My trust in my carers was shot and the relationship between my family and the staff was strained. The doctors and nurses were often hostile. (My mother saved me a number of times from being given incorrect medication or dosage by nurses who hadn't read my chart that day; a behavior that did not endear her to the nursing staff.) We wanted another hospital, and the hospital wanted to be rid of us, but because of the complication of the fistula, no other hospital would agree to my transfer. The ICU staff were more accustomed to dealing with patients in a coma, not a fully aware young girl with a lively intellect who would make demands on their time with requests for physical needs that could only be communicated laboriously through an alphabet system. It was a happy day when, after 4 months in hospital, I was finally wheeled to the ambulance to rehab.
(Saying "rehab" makes me feel like a celebrity/socialite [or Gregory House!] My rehab was more about physiotherapy than addiction counseling, however.)
I contacted a lawyer and obtained my medical records through the Freedom of Information Act.
It transpired that the fistula was created by the nurse doing the tube-change, who was not using the guidewire and sheath that, for safety, is included in every packet of tracheotomy tubes. The manufacturer strongly recommends using the guidewire and sheath, but it wasn't legally required and I guess the nurse, having done many tube changes, felt complacent. Oops.
It also turns out that the hospital had "lost" the page of my medical record that noted which nurse performed the procedure, and crucially, how many minutes I was without oxygen.
In addition to this outstanding episode, my pre-natal records have been lost by two different medical practices, one in Australia and one in the USA. One American obstetrical clinic also managed to input someone else's details over my own. From one appointment to the next a week later, I had apparently gained 40 pounds, was on Zoloft, and goodness knows what else. Before leaving Australia after my first child's birth, I asked my OB for a copy of my records. He refused, pooh-poohing me and declared that the discharge report I had been given by the hospital would be sufficient for my needs. Foolishly, being a tired new mother, I just let it go. After getting to the USA, I found the hospital discharge summary was not at all sufficient. I then had to jump through a number of hoops to get all the information my American OB required.
Now I keep my complete records at home, and can give copies to the providers when necessary. I recommend everyone else do the same. That way you always have your records, and you'll be sure to care for them with more diligence than many professional practices, simply because you have only one set of records to keep track of, and they're more precious to you personally. There is an added bonus that by insisting on copies yourself, you can review them for errors.
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