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.


Summer is Coming!

We’re in the middle of a rainy Spring here and it’s such a relief Winter is behind us. Our son missed a lot of school due to snow and ice in addition to the days he missed for doctors’ appointments. I’m so over the cold. With the weather improving, it’s time to bring up some of the topics that see frequent discussion every year once the weather warms!

Do you have any special plans coming up? I would love to hear about them! We have a difficult time traveling with our son and he doesn’t tolerate the heat well. I would enjoy some sources of inspiration on how we might be able to take a tubie-friendly adventure this Summer.

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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Rough Patch, Part Four

Rough Patch, Part Four

Start here to read from the beginning.

We settled in to KKI but the vomiting didn’t stop. Our son stopped being able to keep anything down at all, even water. The nurses were insistent that he was keeping some down, but they weren’t with him all day. I was adamant they needed to do something but wasn’t sure what exactly that something would be. After the weekend the senior doctor returned and checked on us early in her rounds. She told us he looked OK but she was going to draw labs just in case. Once she received the results that would inform whatever our next steps would be. I settled down with my son for a nap and did my best to keep him comfortable while they worked out a plan.

Within an hour a skittish looking nurse came and woke me up. When I say skittish, her face was completely calm. Her eyes looked terrified. She told me we were being transported. “OK… can I take care of this when my son wakes up?”
“No,” she said. “They’ll be here any minute.”
“Oh… OK,” and I started packing things as quickly as I could. The nurse reassured me that they’d figure something out as far as the items we had to leave behind. I barely got everything shoved into a bag before our son was being woken and loaded up onto the stretcher for transport. Apparently his labs had shown a significant amount of dehydration, even though he didn’t appear dehydrated when examined.

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Rough Patch, Part Three

Rough Patch, Part Three

If you haven’t read the rest of the story yet, start here.

We loaded our son into the car and left for the hospital. It was dark and rain was pouring down throughout the drive to the emergency department. Check-in went quickly. Our son was exhausted and still showing signs of difficulty breathing so it didn’t take very long to be seen. A chest x-ray was ordered immediately and we were settled in to wait for the results. No one seemed particularly concerned so we did our best to relax and wait. We expected to be given antibiotics and sent home.

The nurse came into our room and asked in an unusually timid manner if our son had been seen at one of the other hospitals downtown. We explained a consult we had at one point with an interventional cardiologist, but that we only went once and that doctor recommended against running any tests. I mentioned to her off-hand that we had also done several second opinions at Hopkins. “Why do you ask?” was the next obvious question. Micro expressions danced across her face, all showing signs of discomfort, and she pointedly avoided eye contact. We were to be transferred and they were deciding where. The doctor would be in shortly to answer any other questions. With that she ducked out, having not made any additional eye contact.

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Rough Patch, Part Two

Rough Patch, Part Two

If you didn’t catch the first part, read it first.

We were waiting for many months for a call from Kennedy Krieger’s Outpatient Feeding Program. It’s not something I had mentioned previously; I wasn’t sure how helpful it would be. When the call finally came we were so excited. There was, however, a massive “but.” Our son had begun struggling with a new medical issue, ITP (Idiopathic Thrombocytic Purpora), and we weren’t sure how well he would do in the outpatient program given the need for weekly blood draws and hematologist visits. After speaking with the program’s nurse we concluded that, while difficult, managing his care on an outpatient basis was possible. If we were already actively in the outpatient program and he needed to be transitioned to inpatient they would do their best to have us transitioned to inpatient as quickly as possible.

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Hitting a Rough Patch

Hitting a Rough Patch

I was keeping up with everything. The laundry was washed, blog posts were getting written, and the house was clean. Looking at my blog, you might think I vanished into thin air. Those who followed me regularly were left scratching their heads, “what happened in June 2017?” I never forgot about the blog, or all of my readers. In fact, I missed you dearly. It’s time to share what brought me to a place I couldn’t post for a year.

Our son was doing well. All of his medical appointments were three to six month follow ups and keeping up with the house just wasn’t a challenge any longer. We found a daycare about ten minutes away willing to take a child with a feeding tube for four hours three times a week. They reassured us they were comfortable running his tube feeds, they had done it before for other children, and that they were able to give him the attention he needed. We had a plan and it was as solid as such a plan could be. With that, I took a part time job close to home. The arrangement was I would be in the office while my son was in daycare and work from home for the rest. I couldn’t have asked for a more flexible work arrangement.

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Deadline Changes for the Affordable Care Act

Deadline Changes for the Affordable Care Act

If you’re considering signing up for the Affordable Care Act (ACA) this year there are some important policy changes that have not been widely announced. The changes with the highest impact on the average family are unexpected deadline changes. Open enrollment for 2018 begins on Nov 1, 2017, and ends Dec 15, 2017. This only leaves a window of a month and a half to sign up for ACA coverage.

Tips to get started with obtaining coverage are available through Healthcare.gov. In previous years a public campaign has been launched through many avenues providing information to people who need it most. Do not expect the same outreach this year. The responsibility of knowing the deadlines and getting your application done in the brief window of time provided will be entirely your responsibility. More policy changes which make it difficult to sign up for the ACA may surface as the sign-up period comes closer thanks to the current administration’s dislike for the law.

Please, if you know someone who needs to sign up this year make sure they know about the deadline change. Outreach this year will be minimal compared to the information that’s been provided in previous years. The shorter deadline and lack of information provided will have a very real negative impact on the ability of people who desperately need coverage to sign up.

Happy Mother’s Day

It’s Mother’s Day! Happy Mother’s Day to all the mother’s out there. I hope you’re having an awesome day celebrating how important you are! Without women willing to take the risks and put in the time and energy to raise children, we wouldn’t have the friends and family with us we enjoy each and every day.

There are two categories of Mom that deserve a special mention. To Moms who aren’t off today because they have to work, their child has medical needs that never take a day off, or they’re just plain overwhelmed, I see you. I’m thankful for the work you put in each and every day. Your kids may not be old enough to thank you yet. They’ll get there. I hope your spouse, significant other, or another family member has a chance to give you the love and attention you deserve today. Even if they don’t, you’re still amazing and wonderful.

To the Moms with a child that’s earned their wings, they’re looking down on you today wishing you a Happy Mother’s Day from above. Grief is a perplexing thing. You may feel a hundred different ways today, more if the loss is recent. I’m wishing you a special Happy Mother’s Day. You’ve been through something no one can possibly understand without experiencing it themselves.

Enjoy yourselves! Eat all the food, get lots of presents, and don’t do an ounce of work more than absolutely necessary. HAPPY MOTHER’S DAY!

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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