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Anger, Fear and Stress: There is Something Wrong with Healthcare!

Malaysia, 2011
Malaysia, 2011

I wanted to calm down and step back before writing this article. I wanted the experience to be over and behind us for good.

But I don’t know if it’s over and I’m still angry, so maybe writing will help, after all.

The beginning of every fairy tale is “once upon a time…”. At home, troubles start with “fuck, Mark is sick again”. It’s been a cold spring and we have been trading germs since we came back from our trip. For the past three months, at least one of us was more or less sick at any given time.

After I spent Mother’s Day cleaning various body fluids, it became clear that we weren’t sending Mark to daycare on Monday. We activated “survival mode”, i.e. trying to get Mark better at home without catching his virus and while dealing with our regular workload—ah, ah, good luck with that. We braced ourselves for a couple of tough days and hoped for the best.

But Mark was not getting better. We spent sleepless nights listening to him cough non-stop and he wasn’t keeping any food down. We gave him over-the-counter medicine and tried all the home remedies we knew.

Feng drove from one walk-in clinic to another: they were packed with a posted three- to four-hour wait-time. He turned around. The last few times we went to the doctor, the diagnosis had been “a simple virus” and the advice was invariably to “wait it out”. I can’t stress enough how exhausting it is to wait for hours to see a doctor and to be sent home after a five-minute exam. “Just come back next week if he’s still sick!” And then what? Wait for another four hours? How sick do you want him to be, exactly?

That Wednesday, we decided to take Mark to CHEO, the pediatric hospital. Nurses at triage listened to Mark’s lungs. He had a fever and he was very congested. I knew that. “Did you try Ventolin?” the nurse asked. The last time he had a similar cold, a doctor had prescribed Ventolin (i.e. asthma medication) and a cortisone-based inhaler. I shrugged. “Yes. But he doesn’t seem to work. I think there is an infection.” And I wasn’t too keen on the cortisone, considering it’s a steroid and that the box read “for kids 12 and older”.

As far as I know, Mark doesn’t have asthma. Of course, I’m not a doctor, but I know the symptoms (I had asthma when I was a kid) and I’ve known Mark since the second he came out of me. Mark never has trouble breathing… except when he is sick. Asthma-like breathing is the consequence of a virus or infection, not the cause. I’m not in denial: if Mark had asthma, we would treat it. But Ventolin here felt like putting a Band-Aid on a wound that needs stitches.

The nurse handed me some Ventolin. “Here. Give him four puffs every twenty minutes until the doctor calls you.”

I wanted to scream STOP WITH THE FUCKING VENTOLIN ALREADY!

But of course, I didn’t. Every twenty minutes, I gave Mark Ventolin.

An hour later, a doctor came and listened to his lungs. I explained that we had all been sick with the same virus for weeks, that we couldn’t get rid of it. She shrugged. “There’s nothing to do, you have to wait it out.” I wanted to bang my head against the wall. “Okay, your son has trouble breathing. We are going to give him Ventolin and Cortisone.”

Oh my fucking God.

They put a mask on Mark and pumped Ventolin and Cortisone into him. Mark wasn’t happy with it and we tried to distract him. Every half an hour, a nurse came and added another dose into the machine. Mark was growing more and more tired and agitated. “Steroids make kids hyper,” she said.

I looked at the clock. We had been there for a few hours already.

“Does he want to eat something?”

“Probably not,” I replied. “He coughs so much that he can’t keep food down.”

“Oh… maybe he will want to order something from the menu tonight.”

Tonight?

“Wait… tonight?” I asked. “How long are we going to be here? And what’s the plan, exactly?”

“Oh, more Ventolin. We can’t let you go until he breathing is better. Maybe overnight.” She shrugged.

I took a deep breath.

“I’m sorry but I don’t want him to stay overnight unless there is a plan or an option other than Ventolin. And with all due respect, I have no idea what’s going on and I’d like to know. We came to CHEO because our son has been sick for a little while. I know he is coughing a lot and he is congested. The last time it happened, antibiotics cleared it up. I don’t understand why you are pumping him full of Ventolin.”

“Well, he has asthma…”

“No he doesn’t. The three of us have the same virus. My husband is coughing. I’m coughing. We don’t all have asthma! We need to treat the virus or infection, not the symptoms.”

I sounded more confrontational than I wanted but trust me, I remained polite. I was scared mostly. They had been pumping Ventolin into Mark for hours by then, he wasn’t any better and now he was hyper. We had seen the doctor for about five minutes. We were going nowhere.

“It’s not safe for you to go until his breathing is better. But fine, I’ll get the doctor to talk to you.”

The nurse left and we waited for the doctor. And waited.

And suddenly Mark started coughing again and he threw up on the floor. Feng and I cleaned him up, cleaned us up.

No one came. And trust me, we were loud enough in the exam room. I think I even shouted “oh fuck!” when Mark threw up.

We waited again… and Feng and I looked at each other. “Let’s go.”

So we grabbed Mark and left CHEO. No one asked us anything, no one came over, no one called. I’m not proud of leaving like that… but I was terrified. I didn’t feel I could trust the hospital.

I realize I sound completely paranoid and maybe irrational. I’m not usually like that, I trust health care professionals. But not being taken seriously and not being listened to is a terrifying feeling.

We went home and monitored Marl closely. I wasn’t sure what to expect after that much Ventolin. He napped and seemed better afterwards. Luckily, we are close to the Civic Hospital, so I figured we would rush there if needed.

Mark wasn’t doing any better the rest of the week. Finally, on Friday, Feng tried another walk-in clinic again.

“He has pneumonia,” the doctor diagnosed after two minutes. “Why didn’t you come earlier?”

“We went to see doctors! We went to CHEO!” Feng protested. “They told us he had asthma and that we had to wait it out!”

The doctor prescribed a chest x-ray and… yes, a five-day course of antibiotics.

We had the x-ray done on the Monday. The results we sent back to the doctor who called to confirm it was pneumonia. “I’m worried, “I admitted. “He is still coughing…” The doctor cut me off. “I can’t give you more than five days of antibiotics. Get another x-ray done in a month to make sure it’s gone. Bye.”

And that was it. This is where we are at now. Mark finished the antibiotics. Feng and I are completely paranoid now. Is he better? He is still coughing a bit. We get up in the middle of the night to see if he has fever. We worry the virus isn’t gone. Feng is sick too and of course, he wasn’t prescribed antibiotics. He was told to “wait it out”.

All these years I have always defended our healthcare system. “Sure, it’s hard to access it, but the quality of care is good.”

I don’t think so, now.  I no longer trust the healthcare system.

Feng and I keep on wondering how we could have handled things better. There is always a lesson to learn, right? Except this time, I think we did everything we were supposed to. We kept Mark home, gave him over-the-counter medicine, sought help when it wasn’t working. Help wasn’t provided.

Two weeks of hell, stress and worries. A small financial disaster as well, since we can’t really work “normally” while having Mark and at home but of course, we still pay the regular daycare fees.

The feeling that absolutely no one is listening to us is awful. We are decent people. We aren’t confrontational, we trust professionals. we listen. But no one listens to us. When you spend hours waiting to see a doctor and that said doctor spends five minutes top with you and tells you that “it’s just a virus” and recommends aspirin or paracetamol, there is something wrong with the system. The result? We all walk around sick, spread it around and we never get better.

“Antibiotics” are becoming the new f-word here. Getting a prescription is harder than scoring illegal drugs. I never wanted Mark to take antibiotics, much like I never wanted him to ever eat fast food, cry, get bloody knees and be disappointed. But there’s theory and practice. Antibiotics work and no, you can’t treat pneumonia with aspirin… or fucking Ventolin.

I can be a mother, a writer, an entertainer, a maid, a cook… but I can’t be Mark’s doctor. This is not my job. Yet, I feel I can no longer trust doctors here.

I’m still angry and I don’t know what to do.

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