Being an Advocate in the Medical World: When Things Get Sensitive and Intense

Before becoming Paige’s mom, I never thought I’d have a discussion on whether or not to give a bolus of ketamine or morphine when Paige’s head turned ever so slightly. I never thought I’d be begging a doctor to let me breastfeed, or crying in the bathroom when a new order was made that prevented me from doing something I love for my child. Advocacy becomes intense. My mama bear comes out. I feel as though my motherhood is threatened, simply because your name-tag says MD and I’m just a mom.

There are no black and white solutions to what I’m about to talk about. There is no silver bullet for situations in which your child is on death’s door and there is a medical team taking care of him/her. I react differently than you will, and your medical team is different from mine. But, I hope that these tips will help even if they’re general.

The Importance of Mama and Papa Bear

Protective

Without this protective instinct your cub can now be in danger. Others can attack your cub from any angle, and if you don’t have the mama bear response, you may never see danger coming. God created this instinct – in and of itself, it is not a bad thing. It is very, very good.

Powerful

Being a mama bear is a powerful, beautiful thing. It gives you energy to do CPR on your child in the middle of the night. It makes you run faster than you ever have before. It gives you the strength to be awake 72 hours. It gives you words you never thought possible in intense moments. It is a strong, beautiful thing, and you should never wish you were without it.

The Danger of Mama and Papa Bear

In my case, I am like the bear that freaks out even if her cubs aren’t in danger. My stress alert goes off when having a phone call with the DME receptionist who doesn’t know anything about Paige. It goes off when someone says something slightly rude to Paige. It goes off when Paige is not in danger, when she is safe. This can be very dangerous for you and for everyone around you. 

Hospital Setting

In the hospital setting, the bear alert, shall we call it, can go off at inappropriate times too. Perhaps a fellow has said something that doesn’t go along with the research paper you’ve read. It can cause the bear to go off in the ICU room with your intubated child next to you, and before you know it you’ve lost it and this fellow is concerned about your mental health. This fellow who actually has to have someone else sign off on any important decisions they make (see my last post!). They may have mentioned it off hand in a conversational way – and now, they’ve seen the bear. 

What if it goes off during rounds? That’s NEVER happened to me… (Sarcasm insert). I’m the mom that was part of every single round. That’s where I got my name “Dr. Mom”. I listened to every word and made sure every med was correct, every fact was reviewed, and they understood exactly why my child was here. Well, that obsessive nature can be good – but also, in a setting where they are reviewing life or death, when to discharge, what meetings to commence, that’s not the setting for me to have my bear alert go off. I simply should say to the attending “Can I speak to you afterwards?” and using my advocacy notes, I listen, ask follow up questions, make sure my bear alert is warranted, and then think before I speak. This is how you save your child. Using your mama bear energy in the right moments.

How do I use my “bear alert” in the right moments?

As mentioned in my last blog, doctors are humans – they are not God. They are very wise and knowledgeable and worthy of our respect. If I were to make a mistake as a mother, I would want to receive grace and respect anyway, realizing that my primary purpose is to love and protect my child. Doctors need the same respect. 

Processing the bear instinct

If you come to a situation where a doctor may be presenting as not having the correct information, doing something contrary to what research suggests, or not communicating very well – this is when you may need to have the bear alert. However, before you go on the hunt, think of these things:

• Where is the doctor coming from? Is this something I haven’t thought of?
• Am I the only one seeing an error or misjudgement? Who else have I asked on the team to see if I’m missing something?
• Have I done my research, or is this just a feeling?

If you’ve done your due diligence, that means you’ve given your bear alert time to sit still, process, and think. You’re forcing yourself to think before you act. Even if a child is intubated on life support, you should be able to do these things in a matter of an hour or two. Have someone be your accountability – my husband is mine. 

Find the higher up

Once you’ve done your due diligence, you then find the higher up doctor if there is one (there is always one, typically!) and present your thought out concern. If there is actually danger to your child’s care, they will make note of it and proceed. If your bear alert is not curtailed and you’re screaming, crying, and everything in between, realize it may be easy for them to not listen to the facts and only see your emotion. You can show emotion, but make sure it’s backed up with fact and not just he said she said, or how I feel.

Using the energy for a good purpose

I know this is hard, it’s something I am still working on. However, your bear alert gives you a lot of energy, so before your head comes off, use that energy to work and present a case and even if your heart is racing so hard while you speak quietly, you will be more respected. 

Example of an Unnecessary Bear Alert:

We were at a doctor’s appointment recently. Paige was just coming out of a quadriplegic episode. When her ATP pump isn’t working, a bunch of things happen, one of which is her temperature. Her temperature reduces drastically, sometimes to 93 or 94, because of autonomic dysfunction. However, this is normal and it subsides very quickly – she’s used to it, we’re used to it. 

A nurse took her vitals. Her temperature was low! It seemed almost hypothermic! She rushed in and said we may need to take her to the ER and put her in a warmer. 

My mama bear alert goes off. Images flash in my head of when Paige wasn’t breathing, on a warming bed, almost dying. My heart begins to race. This woman is now threatening my child and me in my mind. I calmly say “No no, she’s fine” and my husband notices right off the bat, “She’s in bear mode” so he puts his hand on my knee and says “let me take care of this”. Which of course, makes me upset, but he is my accountability. 3 different people come in, putting blanket after blanket on my daughter who, btw, can also be triggered by stress, anxiety, and heat. She’s happy, eating her toy and moving all around her stroller. But the nurse doesn’t see it!!

“We want to get a rectal temp. We may need to take her down and warm her up” and my husband simply says that’s not needed, can we speak to our doctor. Now is when the tone of “you’re neglecting your child” comes out, so of course my whole body starts warming up. “Do they not realize she has a neuro disorder?? She’s not septic, her O2 is fine – all of her other vitals are fine! Just look at her!” my mind starts swirling with everything. But, my husband simply asks to speak to our doctor. We hear them talking outside the door. I’m worried they’re going to force us to take Paige somewhere that could send her into a bad episode. I’ve probably burned 1000 calories at this point, let’s be honest. 

I have to leave the room before I scream at everybody involved. My bear alert is on and blaring. When I come back, the doctor is in the room, and everything is calm. The doctor, who knows her, understands the bigger picture. She sees Paige is fine, and explains to us the way the nurses are trained. But, speaking to her was the best thing. She understood, and she was the one who made the decisions. 

It’s taken me a long time to be able to leave the room. I’ve had to leave my daughter on multiple occasions because of my own mama bear instinct. Sometimes, my reaction will make her worse, not better. Sometimes, I need to let someone else handle it. I was right, yes, but my mama bear energy was not in the right place. 

Conclusion 

Work to Refine your Instinct

Mama bear is good – but it can also be bad. We can be brutal with our thoughts, words, and actions. Doctors and nurses have been mistreated because of mama bear. If you think the doctors may be missing something, it is your duty to do the research and present it to those who are listening, but in a humble and respectful way. Actions speak louder than words. Respect and grace go a long way. 

Your Child is Watching

Your child – your fragile child – turns you into something else. I understand it, I live it. Yet one of the hardest things to learn is maintaining your emotions still. If you want to learn how to have self control of your words, practice this – it makes everything easier if you beat this challenge. 

Refraining from yelling, punching (yes, it happens) insulting, etc does not make you a bad parent. It makes you a better one. When your child sees and hears you fighting for them respectfully, you are setting the stage for them to know how to handle the hardest parts of their lives as a disabled or fragile individual, because you went before them. I know it’s not easy, I’m a work in progress too.

The Reward of Respect

One of my best friends at the hospital started off as being a mama bear enemy. I remember gripping the sides of Paige’s crib, sobbing to this doctor trying to make her understand. She later became a mama bear for me. Don’t rob yourself of great advocates simply because you let mama bear take over. 

You’re Not Alone

You’re not alone. Ever. Give yourself grace, give others grace, and continue fighting to be an advocate – just remember to save that energy for where your cub needs it the most.