My Mom and I were talking the other day about Ronan’s latest medical appointment. It was a pre-op appointment to clear Ronan for anesthesia for an upcoming surgery. These appointments can probably be done in 30-45 minutes. But because of the many complications Ronan has, a simple pre-op appointment doesn’t exist.
Long before we drove to the hospital for the appointment, over the last few weeks, I’d sent more than a handful of emails regarding the surgery. I’d made or received at least 20 phone calls to the doctor and the patient advocate. And I’d already spoken to quite a few other medical staff on behalf of Ronan. Hours of work has already gone into an appointment that has yet to happen. Ronan's team has had to review a great amount of material – the procedure, the medications, the precautions, the recovery.
Even though Ronan’s been under before, and has had previous surgeries before, I was (and, honestly, still am) quite nervous each time an email, a phone call, or a discussion about Ronan has come up. But, during the latest appointment, the one that would clear Ronan allowing us to proceed to surgery, I found some comfort.
After telling my Mom about all of the medical stuff from the latest appointment, I shared with her that one of the nurses set my mind at ease. This nurse, who was also a mom, was pleasant, kind, and respectful. Now, I’ve met quite a few pleasant, kind, and respectful nurses elsewhere, but this nurse was exceptionally understanding. I didn't cringe when she started the intake part of the appointments like I usually do. When it was time for her to begin asking questions, I felt a sense of calm. I sat up straighter in my chair and thought I was ready to answer whatever questions she asked.
The questions were standard questions:
Birthdate? December 21st
Current medical condition(s)? Seizures, mito dysfunction, neuropathy, autism.
Reason for today's appointment? Tooth extraction
Weight? 65 lbs.
Did Ronan get a flu shot this year? <blink, blink>
By the time a nurse or doctor gets to that question, especially if this is the first time they are examining Ronan, I have a few responses about flu shots that I keep in my back pocket:
He’s all set.
We don’t do those.
We see the pediatrician about that.
Even though they are a tad vague, those statements are all true. Some people get pushy about the vagueness of some of my responses, but I gently remind them that we’re all set with the flu shot, and then ask them what the next question is. Sometimes the person continues on with the next question, but some people respond with a tsk, tsk and a disapproving comment. One E.R. doctor did that in front of a room full of medical staff because he did not like my answer. In fact, he openly and loudly tsk, tsked me. Instead of focusing on my child who was not breathing very well, that doctor chose to waste precious time. In a rant, he went so far as to blame ME for spreading disease! For neglecting MY children’s health! For putting THOUSANDS of people at risk!
When he was done attempting to belittle me, I had to remind the doctor that I did not race to the E.R. with a listless child whose throat was closing for a flu shot. I brought that child in for treatment for her current condition – which was getting more critical by the minute. It took a few minutes, but the doctor calmed himself down, but I swore I would never let another person push me around about vaccines like that ever again. Enough was enough! Thankfully, we never saw that E.R. doctor again.
Last week, when I was asked about the flu shot, I hesitated. That question brought me right back to that E.R. room situation.
Nurse: Did Ronan get a flu shot this year?
I closed my eyes for a quick second. Then I confidently answered her.
Me: “He had a reaction to one, so…we don’t get them anymore.”
The nurse offered a much kinder response than the E.R. doctor did.
Nurse: “I don’t blame you…”
Me: (barely audible): Thank you.
I can’t pinpoint anything extraordinary that the nurse did besides fully accepting that Ronan has some severe complications and understanding that I really do know my son best. She acknowledged that if this (flu shot), then that (seizures, loss of speech, health and development spiraling downward), and therefore (no more flu shots). What she did wasn't extraordinary; it was enough. To not have to explain myself. To not be judged poorly. To not be belittled. To not be tsk, tsked. My answer, my reason, my actions - they were enough, too.
After another nurse and the anesthesiologist doctor came through with more questions, more input, and more information, two hours later, Ronan was cleared for surgery. The nurse who'd set my mind at ease greeted us in the exam room and handed me the exit paperwork. She also complimented me. "You look so organized, so put together." I laughed. I jokingly said that looks can be deceiving. I am a hot mess inside on some days. But I added that it takes other people to help get me organized. It takes people like her. I told her that it may have been a regular work day for her, but it was so much more than that for me.
Tough days can add unnecessary stress and frustration. Easily, that pre-op appointment could've been filled with lots of frustration. With help from others, though, our day turned out differently.