When People Like Michael Get Sick

Thankfully, it doesn't happen a lot but when it does it feels like a lot. It's not the frequency of infections but rather the impact on us all. Mikey can't easily verbalize what he is feeling inside, which makes it frustrating, probably mostly for him. I think the worst part is watching my parents take ownership of something that shouldn't be theirs to hold alone. Too often the weight of the world is felt on both their shoulders as they navigate a broken system with a child who has special needs.

Michael tested positive for both Covid-19 and Influenza A, so naturally, the doctor Michael saw that was not his primary doctor (because no one gets into their primary the same day) prescribed him Tamiflu. An anti-viral drug that sometimes shortens the severity of your symptoms but is also know to induce rough GI symptoms including; vomiting, nausea and diarrhea. Not taking into consideration Michaels past medical history which includes a surgical procedure called a partial nissen; this essentially makes it very difficult for anything to come up and is used primarily to correct gastroesophageal reflux disease.

So, Michael spent four hours that night after taking the Tamiflu curled in front of the toilet attempting to throw up and unable to get relief because nothing can come up. Which meant my dad spent four hours sitting with Michael on the bathroom floor as he struggled to catch his breath after each attempt. My mom in and out of the bathroom in tears, saying things like "how did we forget to tell her?" "I should've remembered." My dad also shaking his head in agreement and equally upset. I know this because I spent two hours with Michael and my dad on the bathroom floor as we organized a medication list, put cold towels on Michaels neck and tried to change the narrative my parents were establishing; that this was somehow their fault.

My parents of course held his antibiotic that night. **She gave an antibiotic for a possible ear infection. When I called my mom the next morning to check in, they were getting ready to give Michael his antibiotic and my mom said "Sammy they are horse pills" I could hear her fear, "I told your father he can't go to work until Michael takes it." This is from her medical trauma around Michael choking. After years of G-tube feedings, transitioning to solid food was really difficult for Michaels body. It consisted of working with multiple feeding specialists over many years, the days filled with two hours feeding sessions and the mantra we developed for Michael repeated over and over, "chew, chew, swallow." I can remember being a proud older sister when I would feed Michael and he would finish a jar of blueberry buckle in record time, getting to gloat that he eats the best for me. Note: another Michael feeding mantra "blueberry buckle babyyy!" He would belly laugh. Michael swallowed the pill, but when I spoke to my father on the phone while he was at work and I was on my way to check on Michael he said, "that was a big pill and he had a hard time getting it down. It was scary." I always know that when my dad is uneasy, that it must be bad.

During that phone call with my dad I decided to rant about how much I hate our healthcare systems (reflecting now I probably shouldn't have been the one doing the majority of the ranting) but I did, and to my surprise my dad joined in. He said, "why is it on us to remember every detail so the doctor can make an informed decision, they have his charts. It's too much when he is sick, we are tired and overwhelmed." He was as frustrated as I was. We went on to question why they wouldn't ask if he is able to swallow GIANT pills or walk them through warning signs that indicate he needs emergent care (we went over them together before I left that night, have I mentioned I am a nurse)?

I guess what we are trying to do here, is call out our fucked up (excuse my language or don't) healthcare system that makes everything so hard for everyone. But especially people like Michael, families like mine. Do better, please. Because we are tired, overwhelmed and we can't bear the weight of anything else being our fault. I also hope that this gives the first of many peeks into my family, families like mine, Mikey's life and hopefully many more along the way to help create a more inclusive and understanding community.

*Michael is now fully recovered, back to daily bike rides and we are renewed to remember how strong he is.