anonymous / November 11, 2014
A year ago, our 17 year old Team USA competitive swimmer daughter Kate, was hospitalized at Lucile Packard Children’s Hospital in the CardioVascular Intensive Care Unit (CVICU). During the past year we have been fundraising for LPCH in appreciation for what they did for us. Click here to learn more about our fundraising.
Kate is now applying to college/nursing schools and every day is a blessing. Her room is still a mess but so be it. As a result of our experience I am fluent in speaking “ICUese” and want to share with my fellow parents what I learned about interacting with the medical world.
You must be a totally focused advocate for your kid with all medical staff! Get used to always asking “how did you reach that conclusion” and “what are the alternatives”. We quickly discovered that many diagnosis are really sort of a statistical model. For example there needs to be 5 symptoms present in order for a certain diagnosis and if there are only 3 symptoms, then the diagnosis would be different. I assumed, prior to our hospital experience, that a diagnosis was pretty clear cut and often it is but you need to ask for clarification.
My sense is that the interaction between medical staff and patients/family is changing and as consumers of a service, we are now asking more questions of our doctors and participating in the decision making process.
I think this is good and as patients we benefit from participating in managing our health care.
There will be times that as a parent you will find yourself in uncomfortable situations and interactions but you must deal with it and accept that in addition to being a parent, you must act as a patient advocate. During our daughter’s hospitalization, she was having an MRI after a very long day of other tests. I was with Kate while she was having her MRI and she simply reached a point that she was done for the day. I asked the technicians to stop and they didn’t want to. My daughter was very upset, the technicians were upset, I was upset. I told the MRI folks we’d be happy to come back tomorrow but we’re done for the day. It was a hugely uncomfortable encounter but there was no question in my mind that we were done for the day.
We are on a first name basis with Kate’s doctors and when we have an appointment, I know there will be a good deal of laughter and the entire process will be comfortable. We email each other as well when questions come up. Our doctors take the time to ease into an exam. I have had meetings with doctors on their day off. These are wonderful people.
You don’t want medical staff that are treating your kid as a collection of symptoms but rather interacting with your kid as a whole person. It makes a huge difference.
Here is a tip that I learned when my wife and I were living in Europe and once settled in we had our dogs flown over to us. We gave the pilots photos of our dogs who were in the cargo hold, as we wanted them to know our dog’s well being was in their hands. I periodically email our doctors photos of us as a family, be at Kate getting her driver’s license or going to her prom.
And finally never give up hope, be strong, accept there will times you will feel overwhelmed and always relentlessly move forward.
Please feel free to email me directly if you’d like to know more about our ongoing medical experience and our fundraising projects.