My name is Erin, and it's been 4 and a half months since our last clinic appointment. Why haven't we been to clinic? It depends who you ask. When patients aren't doing what the doctor tells them to do, it's usually identified as a lack of understanding, or a time or money issue. For us, it's not any of those reasons. I think it's fear, mostly. Fear of what else we could catch in the hospital.
I meant to make an appointment for August, but it wasn't on the top of my "To-Do List" because Drew had been well. Then he got sick, but we handled it remotely - I emailed the doctor, we went back and forth a few times, sent a video, decided on a treatment plan, Drew got better, no need to go into the office. Then I actually scheduled an appointment for October. Next week in fact. But I don't know yet if we will make it or not. I have a babysitter lined up for the other kids. I think about going frequently. I guess I'm just afraid. I'm afraid to go and I'm afraid not to go, paralyzed in between putting his health at risk either way.
I've spoken with his doctor about this many times, with her explaining that she needs to know him when he is well so that she can better assess and treat him when he is sick. She tells me about the value of good infection control practices and how the risks have been lowered even further by moving patients at our clinic under age 5 to a separate floor where they are taken directly back to a room to avoid other CFers. She tells me about the CFF guidelines, and how being seen quarterly is known to be associated with better health outcomes. I know all of this. No one has really validated my concerns and offered to work with me on a solution that meets my needs.
I don't think that I'm better than anyone else, and that by working at the hospital I should have special privileges, not at all. In fact, I very much try step out of my role on the team when I am talking with my sons healthcare providers about an issue pertaining to his well being. That's tricky though, because the very expertise that I have as a mom is what helped to develop the role of Family Partner, and the entire premise of the position is one of patient & family real-life experiences and interactions with the healthcare system. I think that we're just in a different place than we were 10 or even 5 years ago, when a face-to-face clinical encounter or a brief phone call was the only way to communicate with your care team.
What I'm struggling with is the idea of non-compliance. I'm labeled by the CF clinic as non-compliant because they cannot check the box that confirms that I have been in to see them in the last 3 months. The box was created by the CFF, and is associated with better health outcomes. That's the part I'm pushing back on. There is no doubt that staying connected with your care team will help you manage your disease and achieve more of what you want to in your life. I just don't think that it always has to happen in real life in the clinic, especially given the new infection control guidelines.
I would bet that my sons doctors know more about him than many of the other patients in that clinic, regardless of whether they are seen quarterly. I have put a lot of time and effort into making sure of this. I track everything about him. I weigh him weekly. I contact them regularly with updates and questions and concerns. I use the tools that they have empowered patients to use to identify things like an exacerbation, and I work with them very closely, as his primary caregiver, to do what we need to do to keep him well.
They tell me that the risk of him catching something in clinic is low, but no one appreciates the impact that taking that risk, and failing, has on my life. He has complicated airways that may or may not make him more susceptible to pathogen acquisition. I believe that those complicated airways are directly associated with the complexity of treatment and eradication. It's flu season now, and we just got him over the 40lb mark. Excuse my language, but that was fucking hard work. Constantly thinking about, worrying about how to get more calories in, invisibly, and sticker and star charts and frustration and praise. If he gets the flu, we're taking two steps backward. I'm already operating at capacity, and my reserves are bone dry. And this new enterovirus 68 that's floating around everywhere, making some kids really, really sick. Not only do I fear for his life, quite literally, if he were to acquire that, but the quality of life for the rest of the people in this house that need me when I have to spend more time than I already do caring for my son if he should get sick.
I think that there is merit to my fear, data that shows how these harmful bacteria have been known to travel indirectly from patient to patient. Unlikely to happen with good infection control precautions, but this whole risk assessment thing is where I'm stuck. If your kids life were on the line, what kind of risks would you, should you take? Is the first step here admitting that I have a problem? Or is it identifying that there is a problem with the way that we think about compliance. I need to find a way to break the stigma associated with non-compliance, and I don't know that being compliant, taking part in something that I don't necessarily agree to be the best option for us, is the right way to go about that. I just don't know what is. Thanks for listening.
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