So, last week was one that brought me to my knees. My daughter needed open-heart surgery and I was the powerless mommy with no choice but to throw it up to my faith in God and my daughter’s surgeons and medical staff.
So what’s a social media mommy to do? I tweeted about it all, of course. Starting with checking into the hospital on foursquare. Then posting daily updates and photos on Twitter, Facebook, Instagram and Google +. It was one small way for me to inform friends and family of my daughter’s progress, while giving myself a brief escape from reality. I was sure to include the hospital’s Twitter handle on each tweet. And they obviously paid attention.
When we were moved from the Pediatric Intensive Care Unit, we were moved to a corner room. Not just a corner room, but the corner room with the best view. View to the helipad and city view kinda view. I of course tweeted, Facebooked and Google+’d my joy. This was originally dismissed as coincidence, but appreciated nonetheless.
But as night fell on the floor, I found out that there was a downfall to having the corner unit. It happens to be across the hall from a staff bathroom. The staff bathroom next to the window with the best view. The coveted staff bathroom that everyone evidently wanted to use. and use it they did. Several times an hour. It was around midnight when I realized that it must be the loudest flush in the history of toilets that flush. Of course, this was tweeted, RT’d and…. all around 4am.
Another thing happened around 4am that night. I realized that I had slept through my daughter’s medication dosing. And, while I was fairly certain that her pain medication had been given, I couldn’t be sure. In the old days, I needed only to look outside her room at her chart to see when and what her last dose was. But, in this new digital world, all medical files are kept securely online, and even I don’t have access to my daughter’s medical records. I didn’t even have a record of who her night nurse was, because she hadn’t written it on the white board after the “Your Nurse is…” This is still troubling to me. there should be a phone app or a place online I can sign into to find out when my daughter’s medications were given and by whom. Why is it I can find out the exact status of my Domino’s Pizza online, but I cannot find out who my daughter’s nurse is or when her last pain medication was administered?
The next morning I was visited by the charge nurse who asked me if everything was okay. I initially said, “yes” and then she said “I heard you didn’t sleep well last night….” from there I realized that they were reading every tweet, whether they were tagged in it or not. It lead to a very healthy dialog about a parent’s role in their child’s stay in a hospital, HIPPA rules, and how this very new wing of a children’s hospital might better communicate with families. She offered to move me to a new room away from the staff bathroom, and I said that really wasn’t necessary, as we appreciated the extra room and moving us to another room would only put me in between two patient rooms. It should be noted that not a single staff member used that particular restroom for the remainder of my stay. Don’t tell me there is no real power behind Klout….
I’d love to team up with an app builder and make an application that would act as a medical advocate for a patient, or the patient’s caregiver…. anyone wanna join me?