Seems like I am on a roll; shedding every piece of protective gear I might have.
Shortly after I wrote my last post, which explains the origin of my drive to overcome challenges, I realized (and it seems to be for the first time, as hard as that will be for you to believe) where my passion for enhancing family-centered care for hospitalized children came from.
It's another personal vignette; so feel free to disengage now if you aren't interested.
About 8-10 months after my dad passed away, I became acutely ill with a perplexing problem. I had never been particularly graceful or athletic, but suddenly I was slurring my speech, wobbling when I walked, and having trouble swallowing my food. The day I fell down the stairs on the way to gym, I ended up in the nurse's office. My mom was called who promptly carted me off to the pediatrician--and he promptly admitted me to the local hospital. It was a Catholic hospital in Brooklyn. There were no beds available in the children's ward, so at first I was admitted to the men's floor, but the nuns who ran the place were not happy about that and shortly transferred me to the women's floor, where I shared my room with an elderly woman who was apparently dying of cancer. I didn't know that at the time, but I knew something was very wrong with her; she moaned almost constantly; and even I could tell she seemed to be in horrible pain.
My doctor thought I might have a degenerative neurological problem (you can relax, that was obviously not the case or I wouldn't be writing this today), and I knew my mom was really scared that she would lose me. She stayed by my bedside all day, but come 8 pm when visiting hours were over, SHE HAD TO LEAVE ME ALONE WITH THE DYING WOMAN IN THE NEXT BED. The nuns promised my mother they would look out for me, but mostly they just came by to tell me to go to sleep and stop watching scary movies on TV.
I couldn't sleep, I couldn't walk, I had trouble speaking, so mostly I would lay in bed watching TV or reading books. I couldn't even write legibly enough to respond to the letters my classmates wrote me (no laptops in those days, kids). I wasn't in pain, but I was quite anxious, and ALL ALONE. A series of tests (including something known as a pneumoencephalogram--the precursor to the modern-day CT scan--was done to try to find the cause of my illness).
One night I needed a tissue.
At this time I can't for the life of me remember why, but I know I felt a desperate need for a tissue. It was just out of reach on my bedside table. I moved myself every way possible, but couldn't reach it. I called for the nurse, but she never came. By that time I was distrought, crying uncontrollably, and really needed my tissue. So I did what any self-respecting ten-year-old would do. I wriggled myself down to the bottom of the bed, since the bedrails were preventing me from getting out of the bed on the side, and climbed down to the floor. I probably would have been okay, even though I was quite wobbly, but when I reached for the overbed tray to steady myself, it rolled just out of reach, and down I went. Wouldn't you know, THAT was the moment the nun nurse came in, and yelled at me for getting out of bed. She threatened to tie me in the bed if I didn't start to behave.
The next day I told my mom about the incident, and she insisted I be released. She took me home without a diagnosis, other than--"Its probably a virus" and over time I recovered.
I know I have said those very same words to many parents whose children have a diagnosis that I am unable to make, and I always say it sincerely. Doesn't seem right. Doctors should be able to tell you what's wrong. But sometimes we can't. What we CAN do, however, is make sure that we share ALL the information we have, all our thoughts, and the REASONS for all of our behaviors, tests, and medications. Also, we can work our darndest to ensure that families ARE NOT TREATED as visitors.
It's pretty well acknowledged now that kids need their families with them in the hospital.
I personally think that hospitalized adults also do better with loved ones at their bedside when they are sick and afraid to be alone. Not all hospitals nor all units permit this. But I don't work for all units, I work for the benefit of children and their families. And I will passionately and fervently support the right for families to be with their children at all times.
My problem comes when the child is left all alone during a time of high stress-because a parent can't or won't stay at their side. It brings out some old pain from my own experience, and I want desperately to hold and comfort that child. What you would see if you visited our floor and any of our young children are alone, is that they are not alone. Our staff engages with them; whether child life, nursing, a volunteer, a medical student or the unit secretary, to see to it that they are not afraid, and they have the love and support they need. We help them call home if they want to; we let them sit out at the nursing station if possible; we supply them with video games, and let them watch movies if that is what keeps them from being anxious.