If you have ever been in the hospital for a long stay with your child, you will realize the headache and frustration of "hospital clockwork". Just when you discuss one thing with one nurse, there is a shift change and you have to re-explain your situation all over again, and again, and again, and again. You have to try to interpret the medical lingo from the doctor and then make sure that the nurses are following suite. There are countless communication errors as the shifts rotate and everyone hears and tells you something different. It is maddening, it is emotionally draining, most of all, it is dangerous. So many parents just don't know what to do, or get tired of playing the game, and so they sit back and cross their fingers and hope that the doctors and nurses really do know what they are doing. But as more people sit back and trust the professionals, more errors get made and when it comes to our children, something must be done!
The most important thing you can do is ask questions. Annoy the doctors, be that "person in the room down the hall" that nurses want to avoid because you are so well informed. It is not fun to be that person, but when it comes to advocating for our children, many times you have to be. Ask questions, and then ask them again. Make sure that you fully understand the situation, the medications, the side effects, your options, etc. And while they are explaining all of this, take meticulous notes. This does two things, first of all it gets it on record and establishes it in your mind. But secondly it allows for a detailed reminder for you. When bad or hard news comes from a doctor we are often in a state of shock, we forget the details and just remember the worst case scenarios. We don't think to ask questions, because we are blown away. So take notes, and once the doctor leaves the room, write down all the questions you should have asked and ask them next time. You will feel better prepared, more organized, and more informed.
The next most important thing to do is to keep records. Much as a doctor has a chart, make your own chart for your child. Ask for copies of all the lab work that is done. Google the results. Make notes of when the nurses came in and out, the date and time, what was done for your child, if something was missed, etc. This way, if you know the exact medications your child is taking and make it your job to stay informed, you will be able to stand in the way of hospital error and make sure that your child does not get pushed to the sidelines. Don't let the nurses just come in and hang a bag on the IV drip, ask what it is before they do it, it is your right to know and it is their responsibility to tell you.
All in all, make sure that either you or someone close to you is informed of the situation. Keep on asking questions, and just those simple steps may make you the most annoying parent on the floor, but they may also potentially save your child's life. And in the long run, once your child is released, you will have the knowledge to care for them more confidently.