When your kid needs medical care, it can feel like a daunting experience to be seen, heard, and healed, but you do have power as a parent.
Have you ever shown up for a scheduled doctor’s appointment where the medical providers had no idea why you were in front of them?
This was our experience last week for our son’s surgery appointment at the children’s hospital.
My husband and I believed we were doing a meet-and-greet of the new surgeon that would be taking over our son’s case and care.
It was made known that they had no idea why we were there, but that it was scheduled and there we sat.
When we gave the practitioner the background and most basic medical history, as well as why we believed we were sitting there that day, it was then discovered that we were scheduled with the wrong surgeon; the surgeon we were scheduled with would not be taking over Kadyn’s care and therefore didn’t need to be seen.
The assertive nurse practitioner pulled her pleated pant suit jacket down as she stood up, determined to catch the correct physician before he left the building so that our trip would not have been made for not….
….. After all, do you have any idea how long it takes to get a trach and tube-fed child ready to go somewhere?
Hours. The answer is hours.
After a few moments, the nurse practitioner popped her head back in to let us know that the proper physician was still in the building and would be back shortly so that at least we could meet each other.
As she was leaving, she jokingly, yet honestly congratulated us on knowing what was up, stating:
“I’m really glad you guys can navigate your own care, and you know what’s going on.”
My husband and I quietly rolled eyes and let out a calm chuckle after the door closed behind her.
“Yes, good thing“.
At the same time, a feeling of irritation bubbled up, and the judgmental comment blared in my brain like a foghorn, “Yeah good thing we know what’s going on because they obviously have no idea what’s going on in their own clinic.”
The communication is constantly faltering amongst specialties, amongst a particular clinic and the pharmacy, amongst a particular clinic and another clinic; it is really difficult to navigate that, even with positions in place like “care coordinators”.
“Care coordinator” is a position that is in place to help patients that have multiple specialties involved in their care through that one facility, in this case, it’s a children’s hospital that cares for our son in a multi-disciplinary fashion- special care doctors, surgeons, pulmonologist, vascular anomalies specialist, geneticist, ophthalmologist, dentists, therapies, dietitians, the list goes on and on.
At this point at the appointment, we have a couple choices on how to proceed: Do we get upset that nobody knows why we’re there and we just wasted our time, or do we make the best of the situation? And ultimately, the latter is what we did.
Not long after, the new surgeon came in to our visitation room and he was very nice. He was very upfront in saying that he hadn’t looked at our son’s chart or history and he didn’t know our child’s diagnosis’.
He asked us what our plan of care was with the previous physician before he left their practice, and the state of Colorado.
As parents, we really appreciated that candidness in that he didn’t pretend like he knew what was going on. The surgeon was kind enough to pop in and meet with us, and said he was committed to getting caught up to make sure he is on the same page with our previous surgeon.
That doctor got an A+ for transparency.
The Choices we have
We had more choices.
We could choose fear- “Oh my goodness, if our son needed an emergency surgery today, we do not have a surgeon in the state that knows our child or his complexities or what he would need!”
And shame on the facility for leaving my child in a position where that’s the case.
At the same time, again, we have choices how we look at and approach all of this. I can choose anger that we have to navigate our own care, or I can allow the narrative: “This is my job to navigate care. I have a child with medical complexities.”
…And I can look at that and say, “Woah is me, I was dealt a bad hand”, OR say, “Wow, I was blessed like Mary in the Bible with a child that is very incredibly special and has extra needs and this could become a really beautiful and expansive experience.”
In this story, we had a choice to be angry at the medical institution, or to say, ”We can take ultimate responsibility; we are the caretakers, and we are responsible for navigating his care and we are responsible for making sure that everyone knows what’s going on….
And shame on us for letting a surgeon leave the state without knowing for sure that he updated the new surgeon. I had every Power to do that.
I could have made sure that we had a face-to-face with the surgeon that had been overseeing his care for the last five years, and met with and updated the new surgeon. That can be done and IS my responsibility.
When I shift my focus to “how dare they & I’m a victim” mindset, I’m afraid of what will happen, because this facility doesn’t seem to know up from down at the moment, or they seem to be in some growing pains, or whatever is going on with this institution; being their victim willingly feels dangerous.
My best option is to take whatever power I can…. And responsibility & intention is what leads power.
Think from the end, & skill up to level up
If I want my child to have a good quality of life, I need to learn how to work collaboratively with those on the other side, which means that taking radical and extreme responsibility is my best option at any given time.
My best option is to fully and completely, in a very authentic way, embody the mindset, without anger and with love, that this is part of the job. Coordinating his care is part of the job, and it’s a skill I can learn, as if I was taking on a new job position and I needed to uplevel my skills.
If you’re a waitress, you have to learn the menu. If you’re a banker, you have to learn the procedures and the laws. If you are in any given position, you have to skill up in order to be able to perform and do that position with excellence.
When you have a child that has a medical complexity and that is your position, you want to make sure you are doing that with excellence, and all that requires is learning some new skills in order to perform. Often that just requires a level of understanding of what is required.
Ask yourself, ”What is required of me at this level?“
Closing the story to reclaim power
Back to our story, I dropped the ball.
I knew it was required of me, if I wanted a fluid transition from one provider to another, I knew that I needed to be involved in that process because this is not the first time I’ve done this. I understand what it’s like working with a giant institution with so many moving pieces.
And yes, we can say that it is their job to make sure that care is coordinated fluidly; they even have a position called “care coordinator”.
And it’s also my job. My job is mom. My job is care coordinator. And my job is caretaker. And I can do all of those if I have the skills necessary to do all of those. But if I don’t, then it becomes really easy to blame them for their lack. “This is their job, they’re lacking!” And they very well may be…..
But what I can do is accept the things I cannot change, (how their systems run), and I can take control of my ability to pick up the phone and or log into the system and coordinate with them, and make that my priority….until it gets done. I can do that. That is within my power.
And that is what I’m talking about here today: Understanding what you do have control over, what you don’t have control over, and then taking action in the areas that really matter so that the end outcome of a better quality of life for your child is accomplished- regardless of how it had to happen.
The beauty of it is in recognizing: “Oh I do have power here. I do have power in my voice. I have power in my speech. I have power in my ability to stay calm.”
Sometimes, all those things involve adopting a new skill. We don’t naturally stay calm when we feel like our needs are not being met or our child needs are not being met, yet that is a skill that we can adopt.
And so is becoming a better planner, and a better coordinator, and a better scheduler, and a better communicator- all of these are skills that we can adopt. If the outcome is important enough to us, (in this case the outcome is a good quality of life for a child), if the end goal is important enough, then it validates the means to get there, which in this case is daily action and uplevel in the skills and taking the next steps to get our child the care they need.
This is how we as parents can step into the very first step of collaborative medicine- by understanding that if we have a medically complex kid, all of it is our responsibility, and taking extreme ownership is the best way to help our child to thrive in a world where the system may be broken.
Take power in that. Take strength from that. Take hope in that. You got this.