A letter to Linda L. Morris, a Clinical Nurse Specialist in Respiratory Care at the Northwestern Memorial Hospital:
Hi Linda,
This is a photo of my Mom with her four grandkids. The picture was taken soon after she left the hospital in December 2012. Mom was diagnosed with Stage III cancer of the larynx in early November 2012. She elected to have a laryngectomy, which she had November 27, 2012. She spent 3 weeks in the hospital as she developed pneumonia within 5 days of being in the hospital. It was a harrowing three weeks; most of the nurses had never dealt with a trach before. However, my step-father stepped right up to the plate and learned as much as he could about trach care while she was in the hospital. Mom had a WONDERFUL ENT doc but we had to deal with the hospital doc who also had never dealt with a trach patient.
Mom lives in Thomson, IL - a very small town on the Mississippi River. She was fortunate to find an extremely competent ENT doctor in Clinton, IA. He performed trachs/laryngectomies about once every 6 weeks. But he relied heavily on a local patient to work with laryngectomy patients before and after their surgeries. Tony was a huge factor in Mom's emotional & physical well-being.
When Mom came home, the Clinton, IA hospital arranged for home care for a few weeks. Once again, the nurses had never dealt with a trach but my step-father taught them about caring for Mom. She was discharged from home care in mid-January. She underwent radiation therapy for 6 weeks (over now) and is now comfortable at home. Speech with an electrolarynx is an issue - my step-father is hard-of-hearing so only hears the hum of the electrolarynx. My sister & I try to videochat with Mom and get her to practice with the electrolarynx, but sometimes the Internet delay makes that hard, too.
We also had the foresight to add my step-father, my sister and me to all of Mom's health HIPPA forms. This way, we can speak on behalf of Mom, which has been extremely helpful with billing, care & medication issues.
Anyway, I find Mom's story inspirational. I learned that you can never ask too many questions of the hospital personnel. It may seem nosy and rude to me, but knowing what's going on and the reasons behind it are invaluable. We also found that speaking up for ourselves and the care of Mom was essential. Refusing treatments that didn't make sense to us was also necessary. Hospital personnel mean well, but each patient is different. It's the people closest to the patient who need to keep an eagle eye on the everyday dealings.
Thanks for letting me share the story of my Mom!
Amy Kreiling