I used to be quiet. I didn’t like to “rock the boat” or question authority. If there was something I wanted to say I kept it to myself and later regretted doing so.
My how things have changed.
Jason likes to tell people I had a reputation at Walter Reed. And maybe I did. Just a little. At the same time I do not care if I did. I believe that using my voice and speaking my mind helped him get the best care possible. Why? Because I demanded it from those taking care of him.
While in physical therapist assistant school we were taught a lot about patient care. A lot. We were taught patient rights and responsibilities, ethics, and how to see things from the patient’s point of view. The biggest lesson of all: these aren’t robots we are dealing with, they are people. Now these lessons and classes aren’t just for PTA students. Ethics and patient care classes are taught to everyone in the medical field. So imagine my surprise when sometimes Jason received less than what I learned.
It started in the ICU at Walter Reed. Jason has relatively uncommon allergy to artificial red dye. It’s not life threatening but if you’re allergic to something it’s not worth ingesting. It didn’t seem to appear in his medical records. I had to tell the doctors in Germany about it and now I was telling everyone in the ICU at Walter Reed about it. At the time Jason had a feeding tube that allowed liquids to go into his stomach, as well as take fluid out of it if needed. The liquid food they have looks like Ensure. It comes in cans with flavors like chocolate, vanilla, and various red dye containing flavors (strawberry, mixed berry, etc)
One day a nurse brought in some cans for Jason. I noticed they were strawberry and when she left the room again I checked the cans. Sure enough, red dye was an ingredient. And sure enough Jason was wearing a red allergy bracelet with his allergy listed. I politely told the nurse to get another flavor of food because he couldn’t have it and if his allergy was in the computer and in his charts. She got him a new flavor, said that his allergy wasn’t in the computer but it would be.
This went on for five days. Every day I would tell the day and night nurse about it and yet he would get red dye liquid. The straw that broke my back was on the morning of the fifth day seeing a little bit of pink liquid in his tube and a big bag of red mixed berry waiting to be hooked up. This was done by the night nurse, who I begged to not give him red dye liquids before I left to try to sleep. I had enough. I went to the nurses’ station and threw a fit. I told them I would not leave the counter until it was listed in the computer and every nurse was made aware of what happened.
We actually spoke to one of Jason’s doctors about the incident (actually, I think one of the nurses must have told him to go calm down the crazy lady yelling at the nurses station) and I told him “I shouldn’t have to tell people these things.” And he said, “You’re right, but you have to.”
You have got to speak up. If something doesn’t feel right, if you don’t like how someone is treating your loved one, if you don’t know why they are getting a procedure, if they are late giving them their medication, SAY SOMETHING. Don’t assume that they know your loved one’s chart inside and out, because they don’t. You may not be lucky to get the same nurse two times in a row or arrive when they are rotating in a new batch of scalpel wielding interns and residents (for Walter Reed it was in mid to late June)
In order to spare you from millions of paragraphs of ranting, here are some bulleted points
-When signing consents to surgeries, make sure you completely without a doubt understand what they are going to be doing and (most importantly) why they are doing it. If you can’t explain to another person the what and why of the surgery, you need to ask the surgeon.
-Read and understand the patient’s rights and responsibilities. Most likely you’ve signed paperwork saying that you’ve read them but probably haven’t. It’s a little bit different for soldiers because they are still under the command of the military, but it is still helpful to know that you can refuse treatments or medications, you can request second opinions, you can request different staff, etc. Every hospital/medical facility is a little different but they all should have copies of patient rights and responsibilities available.
-Ask questions. About everything. For me it helped to know why certain things were being done, how long he would need to be on certain medications. Being informed was also a way of coping for me.
-Don’t worry about whether or not you are “bugging” the staff or becoming a “nag”. These people are only in your life for a short while but your loved one isn’t. Who cares what they think?
-If you aren’t happy with a staff member of the hospital, say so. If I wasn’t okay with something a nurse was doing, like how they transferred Jason from the bed to chair, I would say something. Usually they never had a problem with me being nitpicky. But if you continue to have problems see if you can get another person although keep in mind they may not be able to.
-Make sure to thank the staff. I always made sure to thank every nurse, corpsman, doctor, etc who came into our room. Despite the few awful nurses and doctors we had, most were pretty awesome and we make sure to let them know. They have hard jobs and I’ll admit sometimes I didn’t make it very easy. These people deal with the aftermath of war, caring for these young men and women who have given so much. When they are doing a good job they deserve to know.
The squeaky wheel gets the grease. And I don’t think I’ll ever stop squeaking. Even today we met someone that is coming with us on our ski trip next month that had heard of me. She said, “Oh I know you! You’re the one who was pissed about them blocking all the handicap parking at the Christmas party.”
Yup that was me.