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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Learning from the UK Referrendum

Learning from the UK Referrendum

It sounds so far away and irrelevant when you’re battling day-to-day with medical providers, medication schedules, feeding schedules, and more. What could we possibly learn from the UK referendum? Well, now that millions of people have signed a petition for a chance to vote again – this time for serious, a lot.

The two biggest complaints seem to be first, they voted in protest and not because they actually wanted to leave. Second, they would have voted differently if they understood the immediate repercussions resulting from their choice. Re-worded differently, they voted that way because of emotional reasons or because they didn’t fully understand the consequences of their actions.

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You’re Not Alone

It’s been a rough week. There was so much violence and death reported on the news it’s difficult to even register the full gravity of it all. On top of that, loving parents on vacation with their son learned the hard way that, in Florida, deadly efficient predators lurk in water so shallow even adult fish would prefer not to swim there. Did I know that before this week? Yes, I did. Would I expect anyone else to know who doesn’t live in the areas these predators thrive? Absolutely not.

Next week we meet with therapists and a teacher from our state’s early intervention program to discuss our son’s progress and our goals for the next year. He was tested last week by neurology and the teacher. It was devastatingly obvious he’s behind. How far behind is difficult to discern. Neurology told us he’s performing between 18 and 24 months in general. The teacher gave no hints about what she thinks. We’ll find that out next week.

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What Can I Do to Help?

What Can I Do to Help?

This is the number one question we hear from family members and friends. It doesn’t always come out explicitly and sometimes it’s not even clear. I can see it in their eyes. They want to help and they have no idea how. They feel powerless and it doesn’t feel good. It’s uncomfortable, confusing, and frustrating.

It makes it even more difficult that we don’t always have an answer. Feeding our son isn’t as straightforward as it is for most kids. If someone does watch our son for us we need to be back before it’s time for him to eat. Some aren’t comfortable watching him at all because they don’t understand what it means to have a feeding tube or how to handle an emergency.

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Feeding Tubes and Swimming

Feeding Tubes and Swimming

It’s a common question. “My child has a surgically placed feeding tube. Can they go in the water?” To answer there’s some context required so it’s best to consult with your physician. This is especially true if the tube site is less than 6 months old. Assuming the tube site has completely healed from the surgery and the stoma is well established, the rest of the post applies to you.

If your child gets in the water and the water goes through his stoma it lands in his stomach which is the exact same place it would end up with any other child. There are plenty of places where swimming is simply a bad idea. Lakes can grow many different types of bacteria which can make you sick. If you’ve been swimming in a lake your whole life you’ve probably already been exposed to whatever is in it and it’s unlikely you’ll get sick. A child who has never swum there before might get very sick from that same bacteria.

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Eligible for Government Assistance? Please Take it.

If you’re eligible for government assistance of any kind, you need to use it. I understand that some are embarrassed about needing the help. In reality, not taking the help you need puts you in a position where you’ll need even more help in the future. Allow me to explain.

Say you’re eligible for Medicaid but you would prefer not to sign up. You feel fine and have no obvious medical problems so you’d prefer not to fill out all of the paperwork and wait in the lines required to prove you’re eligible for medical assistance. Sounds logical, but the longer this goes on the more likely you are to have a health problem which goes undetected because you haven’t gone to the doctor. By the time you find out you need to watch your sugar you’ve gone past being pre-diabetic and you now need insulin to control your blood sugars. If you had known you were pre-diabetic years before you could have put off having full-blown diabetes for years.

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No More Judgement

No matter what you do, people are going to judge you. It’s the culture we live in right now. There’s this overwhelming expectation that everyone needs to be perfect at everything they do.

  • Kids play sports? They have to win, and nothing less will do. If they don’t, something must be wrong with the coach.
  • Your kid watches TV? Well mine doesn’t, and I don’t think yours should either. You must be a bad parent.
  • Your kid doesn’t do well in school? Well it must be the teacher’s fault, because there certainly can’t be anything wrong with the child.
  • What do you mean your kid is struggling with health problems? Since I can’t tell they have health problems in the two minutes I’ve known them, they must be fine!

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Ableism and its Impact on Our Children

As parents, we’re keenly aware of the difficulties our children struggle with and do our best to help them blend in with the rest of society. We know what happens when you don’t blend in. You get stares. Children ask questions, and instead of answering them the parents shush them, as if the act of noticing someone else is different is inherently naughty. The child’s question goes unanswered, and so the child stares. The parent looks everywhere but in your direction and ignores you and your child’s existence.

“…the “ableist” societal world-view is that the able-bodied are the norm in society, and that people who have disabilities must either strive to become that norm or should keep their distance from able-bodied people.” (1)

Is this the intent of the parent shushing their child? It’s doubtful. In the process of learning, children have a tendency to ask a lot of questions in public that aren’t appropriate public topics. The intent of the parent is likely good. Unfortunately, those good intentions send a specific message to the child. Disability is to be ignored. Do not try to understand why someone looks different. Leave the person that looks different alone (avoid them).

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The Difficulties of Breastfeeding, a Special Needs Perspective

In honor of breastfeeding support week, I would like to share this with all of you. I wrote it a good while ago and decided to shelf it indefinitely. I think I’ve come to a place where I’m finally comfortable sharing. Enjoy!

Let me start by saying, a lot of people in the previous two generations do not understand breastfeeding. They bought in to the sales pitch that formula is better for your child. They believe bottles are better than the breast. The first time your child seems to struggle (even if only a little) being breastfed, the overwhelming response is that shoving a bottle of formula in their mouth will make everything better.

In order to balance this out, others have gone to the extreme to claim breastfeeding is best in all cases. There is never a situation where formula needs to be given, and if you give your child formula you’re denying them the chance to bond with you fully. The truth is in between, as is usually the case. There are situations where children need to be fed formulas. I didn’t know this when we started on our journey with our son, but there are formulas designed to help children with medical needs such as difficulty digesting and unknown allergies.

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