Voice for the Voiceless

We left the house exactly as scheduled, which in itself was a miracle, arriving as requested 30 minutes prior for check-in at the hospital. Everything was going smoothly thanks to pre-check-in via the phone, and we were sitting in the radiology waiting room a full 10 minutes early. Our appointment was for 8:00 am, and I thought, man, we might be out of here by 9 o’clock.

Before I get too deep into this story, let me tell you a bit about my son and his temperament. He is patient, sweet, smiles all the time. He rarely, if ever, cries – if he does, we usually end up at the hospital because it probably means he is in intense pain. Those with his rare disease tend not to process pain the same as what is typical. So far as we understand, he only processes it if intense or prolonged. He has never thrown a temper tantrum. He is relaxed yet never stops moving. Even as an infant, he rarely cried, a gift our pediatrician had said since our daughter non-stopped cried for the first two months of life. While I can count on one hand how many times my son had his entire first year.

It became clear that we were not going to leaving by 9:00 am. Finally, 30 minutes after our scheduled time – with a child who had been up now for over 2 hours without being able to eat, we were taken back. He was still pleasant. As the radiology technician started to go over the order with us, I realize an issue. “You didn’t mention the tube?” I asked, and she replied, “we try to get them to drink it first.” I quickly asked with a bit of panic in my voice, “but there is an order for the tube?” She excused herself to consult the doctor.

She returned and told us there wasn’t a nurse available to place the tube, but the doctor would. I clarified that this would not be an extra charge, something that all parents of children in and out of the hospital for tests tend to ask. After all, special needs families are far from novices of the insanity that is medical billing. She replied, “it’s a package, no extra charge.” We all had a chuckle.

When the doctor finally arrived, quickly, it became apparent that he was not interested in placing the tube down our sons’ nose into his stomach. Knowing this child – all of our struggles the entirety of his life to that day – I told this trained professional doctor that his way was not going to work. This is where the battle begins.  Between you, the caregiver – who repeatedly has been told, you are the expert in your person – but here you are, standing toe to toe with a medical professional who thinks they are the expert. After all, they went to medical school. Yes, they have seen many things you never will, but they have never met your person until that moment. You are their voice, regardless if they speak.

My husband, an engineer by trade, tends to be more scientific and direct, asked the crucial question, “how much does he need to drink?” The doctor replied, “not much, maybe 2 or 3 ounces,” and he agreed that maybe we could get that into our son.

The next hour was trying to force this drink down my son’s throat, stopping to try to see via the x-ray if he had ingested enough and the doctor saying, “just a little more,” then starting the entire process over again, and again, and again. The 2 ounces became 4, later became just a little more, and before we knew it, an hour had passed, and there was not a picture that showed anything. What now? The doctor thought the only answer was drinking the entire bottle. We would NEVER have agreed to this impossible task. After tears from my son and myself, screaming from a boy who never has a care in the world, and every member of our family having a temper tantrum that previous hour, the doctor asked us to do it alone. He wanted us to get the same amount it had taken an hour with a doctor, a radiology technician, and two parents into our son who was gagging, screaming, crying, and fighting the entire time, now ourselves.

Remember I mentioned earlier, my son never cries? When he does, I am a wreck. I cried with him. I tried to soothe a child who there is no soothing. Due to his cognitive impairment, something this doctor is probably not used to witnessing – a child who doesn’t react to his parents. With our daughter, I can hug, tell her that if she takes this medicine, it will be yucky for a bit, but it’s for the greater good, and she can understand and comply. I can tell her I love her, and I am here for her. My son doesn’t understand any of that. He barely knows his name, and he doesn’t need your hugs to fall asleep or hold your hand to feel your love and doesn’t do distraction tactics. There is no television show, iPad, toy, song. There is nothing.

We moved into the room next door, and after the second failed attempt resulting in actually being unable to keep any of it down at this point, I declared in anger, “I’m done.” I was defeated. We both looked at the container, still half full, tears in my eyes, and our sons, we knew what had to be done. I was sick to my stomach, infuriated. ANOTHER failed test because we couldn’t get a good read. I gathered my exhausted boy and stepped into the hall, asking my husband to tell them we were leaving. That’s when the doctor came to speak with us, now in the hallway, finally agreeing to do the tube. I looked at my husband for help, unable to speak at this point, and I was so happy he had also had enough of the torture, telling the doctor we were through.

The doctor, trying to defend the last hour and a half, went on to explain how we didn’t understand about the tube. He was trying to spare us all the pain, gagging, and the discomfort it can cause, but mostly the “bad” memory our son would have. It was at that moment that I realized this poor man had no idea. I said, “he won’t remember any of this tomorrow, but we will,” motioning to myself and husband. So, he had done that, giving myself and husband the traumatic memory we will have to live with for the rest of our lives. The doctor apologized, and my husband looked him dead in the eyes, asking, “what do we do as parents? How do we work with doctors and explain we know what is best, so this doesn’t happen again?” The doctor didn’t have an answer.

The rest of the day, I was beaten down, exhausted, and fell into most of my bad habits, eating poorly, not wanting to exercise even though it was on my schedule, wanting to be alone. Then something clicked, and I realized I did everything correctly until I let the doctor choose something that wasn’t his choice to make. I went to see a specialist. I suffered through that appointment, and so did my son. I got the order, and it specifically said what they were to do. I reminded them as we got there about the order, and I even gave an explanation with examples of why we need that order, and they still didn’t follow it.

My husband, son, and I were forced to suffer, and we left with no result—just more reasons not to do any more tests.

The Radiologist thought he would save us from suffering, but the truth is, we suffer in one way or another almost daily. I’m so tired of fighting that sometimes I go with what the doctors want because I assume they know best, especially in a situation I have never been in. After all, they are Doctors. Then I remember it’s “Practicing Medicine, not doing medicine,” as a professor once said. It’s about ruling things out, treating them with medication to feed the economy more than it is about finding a cure unless the cure is worthwhile, he would say.

It is so hard to be a caregiver, especially for someone who depends on you to make all their choices for them. At times you will make the wrong choice, we do it for ourselves even, but when you do it for someone else, it can be challenging not to feel an extra level of defeat, especially when we are told repeatedly how we are their voice. How can that not feel like a failure on my part?

I often wonder, would my son rather the banana muffin but here he is stuck with the blueberry? These silly little things he gets past because they aren’t important to him. Every single test he has is because of me. I could say it’s because of his diagnosis, but really, it’s because I took him to a specialist who wants to learn more about this child, and at times I don’t know if it’s for him or their curiosity.

What did I learn from another failed test? I learned to ask more questions:

• What do the results of this test explain?
• Is there a course of action if the valve is loose?
• Is this to rule things out?
• Can we see results if he isn’t having symptoms?

Also, stick with my gut. If you have an order and the professional who is supposed to administer the test does not see this fit, yet you and the prescribing doctor did, sure you can weigh what the new doctor is telling you. But you make the ultimate choice. I regret not asking, “Are you refusing to perform this service as advised by his prescribing doctor?”

Doctors are not the end all know all. Yes, there are amazing ones, but there are also terrible ones and mediocre ones. I don’t know if that Radiologist was terrible, but he was not prepared for our unique situation. He was not a good listener, and he didn’t take the time to ask us more questions because he had already decided he was correct. I gave him the benefit of the doubt – It turned out he wasn’t correct – and that is something I have to live and learn from. He did reach out and ask us to come back, but we still haven’t. If we do go back, I would ask for him. Because it’s not every day that you meet a doctor who will admit they were wrong and they learned something from it.