A Rough Flu Season

Note: I had written this in February of 2020 but was not ready to publish at the time. That is why this story make a no mention of COVID-19. I chose to publish as written for educational purposes. I will address COVID-19 in future posts.

We lined up for our flu shots again this year, just like we do every year. That’s really all we can do to protect our son. He gets his shot, but it just doesn’t work as well. He requires immune suppression to stay healthy and that weakens his ability to fight infections, period. It helps that his body recognizes the pathogen sooner, but it doesn’t protect him like it does the rest of us.

On an otherwise normal Friday he spiked a fever in the late afternoon, not long after he had settled in from school. With flu going around we had him swabbed that evening, he came back positive for flu B. We started the anti-virals right away. We kept him resting as much as possible over the weekend but he mostly played like normal. Sunday he took a short nap, no big deal. Monday he was still sleeping when I left for work. I wasn’t concerned. He had three days of anti-virals under his belt at that point and his nurse would arrive before my husband would leave. Everything felt very much under control.

At around 2p I received a call from his nurse that our son really hadn’t woken up for the day. Apparently he had slept in, normal for a sick kid, but she was becoming worried now that it had passed into the afternoon. She could rouse him, but he would fall right back asleep. He wasn’t showing any interest in his favorite toy, his tablet. My husband and I both headed home to assess the situation.

Now, nothing at this point was screaming emergency, but the nurse was worried. You don’t ignore that a woman with decades of nursing experience is worried. We had spoken with the on-call over the weekend about when to bring our son in. She told us that if, at any point, we felt uncomfortable caring for him at home to call and they would call us ahead into the Emergency Room. Arriving at home, the nurse was more than a little worried. She wasn’t panicking, but you could read the urgency on her face. I packed my bag, my husband packed our son’s. My son and I left within 30 minutes.

The ride downtown was uneventful and I called ahead on the way. Almost as soon as we arrived we were taken back to triage. This was well before the Emergency Room “evening rush,” and it was a quiet place. Triage held us until a room was located. They were also concerned, but not as much as his nurse at home. The one nice thing about Emergency Rooms, there is only so much panic a health professional will show when they’re surrounded by walls full of life-saving equipment. As soon as they took us back to a room I was able to relax a little. From here on out, we were in the right place.

The discussion soon flowed into the normal, “where is he going?” type of questions. At first that question seemed to have an obvious answer, but it was complicated by the lack of alertness our son displayed. At first glance it looked like a simple monitor and release. I was on board with that, we just needed to do the monitor part well enough that we were certain he’d be OK once he was sent home. His medical team agreed. The paperwork began, but then he oxygen started to dip down below 90%. Another holding pattern while we watched, within an hour the oxygen had to be turned on. Now the general floor wants him to go to the Intensive Care Unit.

More waiting followed, not abnormal for hospitals, and I sat with him. He was still mostly asleep but he was rousing briefly for the really uncomfortable things like IVs. I watched the fluid drip and waited. His fever had dropped to only slightly above normal but he still wasn’t alert. Oddly though, his face was turning red and his head was starting to sweat. He started to shake a little in his hands and feet so I paged the nurse. Never having seen him do that before, watching it was both concerning and stressful. Within 30 seconds the minor shaking turned into a full blown seizure and I ran over to the door, pulled it open as quickly as I could, and yelled for a nurse (any nurse, we were right in front of the desk).

You can miss a minor seizure if you don’t know what you’re looking for. It’s pretty difficult to mistake a full blown seizure for anything other than what it is. Thankfully, we were located directly in front of the nurse’s station and the nurse able to see into our room from her seat immediately called for help. This was the call for real help, not call button that gets pressed 50 million times a night for fluffier pillows, ice water, and “can I go home yet?” help. As soon as I heard them scramble I hurried back to my son’s side to prevent him from ripping out his IV line until they could get in. In reality, they were right behind me. Before I could get in position I only needed to grab one side, the nurse who saw him first had the other. Someone called for the attending.

It hit me for the first time as they started a second IV and took additional blood work, he could die. I searched the Attending’s face for some reassurance but there was none, he was clearly re-analyzing the situation as well. No one expected a seizure. His fever had spiked to 42 degrees C. The attending asked if he had ever had a seizure before from a fever and I explained to him that no, this had never happened before. He began a routine explanation he clearly had memorized about how fevers can cause seizures and, if they do, they normally stop on their own within a few minutes. More importantly, he didn’t leave. Attending physicians don’t hang around to watch routine medical situations play out. My heart sank.

After three different doses of anti-seizure medication they finally settled him enough he stopped thrashing. His eyes continued to dart back and forth. We were moved to an Emergency Room Intensive Care Unit bed. The Pediatric Intensive Care Unit decided to take us. All that was left to do was to monitor and wait for the labs to come back. The rest of the night was a massive blur.

Around 5a they woke me up to tell me he had come back septic with a bacteria that’s normally resident in our bodies, but usually harmless. They were confirming the result but would put him on IV antibiotics just in case. The resident made a convincing attempt to explain that the result was likely a contaminant and this was simply being done as a precaution. She seemed to believe it herself, but I guess I was too tired to control my facial expressions and she could tell I wasn’t convinced. She gave up after the third attempt to explain to me how my son was actually fine and he’d wake up soon after he rested from the seizure.

I wanted her to be right, but the Emergency Room’s attending physician watched us leave from the last hallway he was responsible for managing. That doesn’t happen because your child is napping and will wake up in a few hours as good as new. Everyone on day shift in the Intensive Care Unit was kind and supportive, reassuring, and confident that our son would wake up soon. By early afternoon the second culture came back positive, confirming the original result. At evening shift change they were sincerely relieved the antibiotics had already been started. At this point, it was likely bacterial meningitis.

Why do I share this? I share it because this is the reality that immune suppressed people go through. This happened. In fact, it happened just a few weeks ago. I will forever have it etched into my brain. Our son nearly died.

Get your flu shot, please. I know this year was a bad match. It still helps. You’re saving the lives of elderly, young, and both visibly and invisibly disabled people all around you. We expect our son to make a full recovery, he’s walking again under his own power as of the past few days, but he could’ve easily not made it through. It’s a small needle and it’s quick. You can even get vaccinated at the pharmacy now if your physician is too expensive and your workplace doesn’t offer the shot.

Please.

4 Spring-Inspired Stress Relievers for Caregivers

This is a sponsored post for Vive Health. I have been compensated for sharing it with you. All opinions remain my own and I was in no way influenced by the company.

Don’t worry, this post isn’t an ambiguous guide to caregiver stress relief with vague tips like “Try not to stress so much.” Caregivers know that fighting stress and anxiety is key to maintaining mental and physical health – so you can stay in tip-top shape to take care of your loved one. It’s easier said than done, however. Get inspired with these 4 real-world, practical ideas that can truly get your spring off to a bright and stress-free start:

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Before I Had My Son, I Wish I Had Known…

The biggest surprise for me after having my son was how much control other people wanted over decisions involving him. This came up quickly as he struggled with gaining enough weight from the day he came home from the hospital. Family members wanted to attend doctor’s appointments. Everyone seemed to have an opinion on how we could fix the problem. Some of them were insistent we created the problem ourselves by not following their “expert” advice. None of this was true of course. He was eventually diagnosed with Noonan’s Syndrome which is known to cause all sorts of growth difficulties and not just poor weight gain.

Looking back, if I had known going into it others would be so pushy and insistent to the point of blaming I would have more resistant about having outside involvement in our son’s health concerns. Though, I’m not sure that would have even helped long-term. After all, they probably would’ve tried to exert their influence in other ways if they hadn’t been using all of their energy they way they did. I recommend first-time parents set boundaries early and often. It’s your child. Don’t let anyone else tell you how to raise them.

What do you wish someone had told you before you began having children?

PTSD Symptoms and Support Organizations

After airing my podcast reading of a previous post about PTSD I was asked to gather and provide more information about PTSD symptoms and support organizations. I’ve thought long and hard about how best to cover this information. After all, people who are suffering from PTSD need professional help. Self-diagnosis isn’t reliable and it’s difficult to comprehensively describe any medical issue, much less a mental health issue, on a website with such a broad international audience. The approach I’ve decided upon is to aggregate the information as concisely as possible. I strongly advise anyone who believes they might have PTSD to seek the assistance of a therapist who has experience treating someone with PTSD.

If you are in need of immediate assistance call 911 or go to an emergency room. This post is for informational purposes only and is not a substitute for medical care.

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Munchausen Syndrome by Proxy

Munchausen Syndrome by Proxy

There is a lot of misunderstanding out there about Munchausen Syndrome by Proxy (MSbP) including what it is and what it’s not. It’s a tough topic and an important one to understand with the government being more involved in our lives and parenting decisions than ever before. Accusations – true or false – have the capacity to break up families and destroy relationships.

MSbP is a condition where a caregiver makes their charge sick to gain some reward. The reward may be attention, sympathy, validation, or anything else the caregiver receives in return for their patient being ill. Typically, the relationship involved is that between a parent and child. MSbP is considered to be abuse. Harm undeniably comes to the recipient of the abuse and cases of death have been reported.

This syndrome is not poor parenting. Disagreeing with medical professionals or getting a second opinion does not indicate MSbP. Those things can undeniably place a child at risk when taken to the extreme, but a label of Munchausen Syndrome by Proxy is inappropriate. The words we use matter.

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