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.


Vaccination and Institutional Trust

Vaccination and Institutional Trust

I remember when vaccination wasn’t controversial. It feels like a long time ago. It’s unlikely things will change any time soon because people are no longer placing high levels of trust in institutions. There is a substantial amount of evidence people serving in the highest levels of government, both at the White House and Congress, aren’t being truthful. Even when they are, it’s difficult to take what they say at face value. It used to be that when someone took political office they set up a blind trust or sold anything that might be perceived as influencing their decision making. That’s no longer the case in every situation.

I say that to say this, I understand why it’s difficult to trust hospitals. Physicians of all kinds, especially Pediatricians, seem to follow the recommendations of large organizations. It’s difficult to trust these large health care organizations when we see scandals like the Epipen pricing scandal where the Mylan CEO who is accused of gouging is U.S. Senator Joe Manchin’s (D-W.V.) daughter. Fortunately, the scientific evidence to support vaccinations has been around a lot longer than recent history. When vaccinations were developed and these programs were first implemented, the institutions doing the research were worthy of our faith and trust.

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H.R. 1270 – Restoring Access to Medication and Improving Health Savings Act of 2016

H.R. 1270 – Restoring Access to Medication and Improving Health Savings Act of 2016

This law is a new one working through Congress, and a lot of people haven’t heard about it yet. I want to bring it to your attention because it could save our family – and possibly yours too – a lot of money. The law proposes to modify the existing healthcare law, the Affordable Care Act, to allow the use of Health Savings Account (HSA) and Flexible Spending Account (FSA) funds for over the counter medications without a prescription.

How the Process Works Now

You can pay for over the counter medications with HSA and FSA funds now – but only if you have your doctor write you a prescription. To pay for your allergy medicine or headache medicine you need to go to the doctor every time you need more and have them write down on a prescription pad the medication is necessary. Then, you go to the pharmacy and have them “fill” the over the counter medication just like they would fill prescription medications.

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Emergency Preparedness – Hurricanes

Emergency Preparedness – Hurricanes

Hurricane season is officially here with the arrival of Hurricane Hermine last night in Florida. I realized as I lay in bed trying to go to sleep that I had yet to do a post about the challenges unique to Hurricanes. I published a similar post about snow last winter if you’d like to check it out. Hurricanes, however, are a different beast. The challenges commonly presented include:

  1. Power outages
  2. High winds and structural damage
  3. Flooding

The number one thing to remember with a medically complex child or even an adult that needs assistance is to evacuate the moment you’re asked to do so. If you’re new to living in an area visited by Hurricanes, these are not just rough storms. They destroy large swaths of property. There will not be power, and you’re unlikely to have fresh water. If you insist on staying after the evacuation order you are taking your life and the life of your charge into your own hands.

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Emergency Preparedness – Snow

Depending where you live, you’re going to see a lot of snow this weekend. It’s coming down heavy. There will be high winds and low enough temperatures to ensure the roads will be impassable for some time. There are standard rules of thumb to follow. Have batteries, a radio which takes them, enough food, and a gallon of water per person per day. Typical preparation is for three days. We have our kids to think about, though, and they can require a little extra preparation.

Check your supplies. Make sure you have enough formula to last you through the weekend. Verify you have a spare of whatever might need replacing in the case of an emergency. Expect the power to go out. It’s probably too late to get a generator now, but if you need uninterrupted power for medical equipment, make plans with your admitting physician ahead of time to have a direct admission in the event of an outage. Don’t forget the gas for the generator.

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It’s that time of the year. Many people miss the loved ones they’ve not seen in months or more. The holidays have a way of reminding us parts of our family are missing. It’s especially difficult when you don’t know why the other person stopped talking to you. It can also be tough if you feel you didn’t have a choice but to stop talking to the other person for the sake of you and your family’s wellbeing.

If the issue is resolvable this is a good time to consider reaching out to mend fences. It doesn’t have to be some kind of extravagant gesture. A Christmas card, an e-mail, or even just a signed postcard will let the person know you’re thinking of them. Will it work? Who knows. The important thing is to try. You’ll never know unless you try.

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Divorce Information

This is more than slightly off topic, but recently a lot of women in my support groups have talked about either divorcing their spouse or their spouse asking for a divorce. The ones whose spouse request a divorce are taken completely off guard and are especially distressed. I’m going to create a page about this when I have a moment, but in the meantime I found a great resource that includes information about divorce in all 50 states. It has lawyers you could potentially contact, but does not push you into doing so. If you would prefer to do the research on your own they provide all the information you need.

I hope it helps. When I finish with the page it’ll be more comprehensive. It makes me more than a little sad to think about everyone going through this major life event having no idea where to begin.


Update: The page is up! It didn’t take as long as I thought.

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