Picture Evidence

When you think about things you take pictures or videos of I bet rashes, swollen knees, and seizures are the top of your list. Why would you have your kid grab a video camera while you keep her kid brother safe so she can film the meltdown? Why take pictures of gross, scary moments?

Because you may not be able to explain the issue to the doctor with the same impact as a photo or a video. Sometimes parents or caregivers are dismissed because the real problem doesn't show in the words. The swelling can go up and down and just not be there when you get to see a professional. The rash clears up before the office opens on Monday but take the picture with your story and you may get a bit further.

You don't need pictures of every dribble of snot. But a sample of moments that need to be looked at will help. Remember that list of stuff that you should take to the doctors? This is on there. Include any information that may help them figure out what is going on. For a rash, include the foods that the patient ate, any new things introduced into their environment, anything that might be a clue.

It you can print them for their records great, if not that's ok. But at least show them to the doctor, and any specialists that may be able to help. It is amazing the little detail that you think is nothing will strike something in on of the doctors.

If they don't see it as important the first time, keep updating the records with more until someone can put you at ease that it is dealt with. Don't give up. Stay on top of things because you are the one who has to deal with it.

Don't feel bad for taking a minute out of the crisis to take a picture or to have someone take a video. It is an important addition to treatment.

Know Your Medical Orders

I have a story to tell and it proves to be a good lesson. My son's doctor wanted some diagnostic testing done on my son. When I was in her office she made sure I knew one (of two) important fact. The blood had to be drawn at a hospital that will process the blood without waiting.

So, I do the leg work and find the proper place to go. I give the script to the woman in reception but not until I have read it over. I made note of the large number of draws and the instructions written across the top:

 "Free Flow, No Tourniquet for ...."

We wait our turn. They place us in this little room with the script placed on the table, along with a whole long list of labels that will at some point wrap my son's vials of blood. I sit with my son on my lap and they bring in one lady to hold him, which is in no way necessary. There is the vampire herself, and a third lady who joins us after a few vials have been drawn.

I went out of my way to explain what the doctor had said and asked if I had come to the right place. I was told that I was.

I watch and listen as they do what they. The main lady is drawing vials while the third is splitting it into the different tubes and applying labels. At one point my son's blood slows to a crawl so she decides to cap that spot off and re-poke him. While they are reading to switch arms, they are talking about the other blood and how this one is going on ice and that one needs more and what label goes on what color tube.

Then the main lady gets ready to take more blood but I stop her. I HAD to point out that they needed to get a tourniquet free flow tube. I had to move a wrapper from the script to point it out when the label woman said that it didn't show it on the labels that she had. 

Three pokes and no apple juice later, we had it done. But you know I told everyone involved what happened including the doctor who did the ordering. I told her that if some of the blood work came out a little funny, it was their fault.

My point of the story? It is up to the patient and or the caregiver to know when to speak up and in order to do that, you must know all that you can of the orders, the medications, and the procedures. 

You can't come across as a know it all, but concerned and informed is a great way to be. You don't have to be pushy (to start with,) but stand your ground if you aren't sure they are handling things correctly. They may know a lot and have been trained but they are also busy humans. If nothing else they should be able to tell you in a reassuring way, why or how they are doing things.

Ask questions. Be informed. Double check and ask again if you need to. You are the advocate to the patient. When they can't or shouldn't have to, sty on top of it, you are there to do it. A hard but important job.