Your Kid’s Sniffles are My Kid’s PICU Stay

It’s that time of year again. The leaves are trying to change (or rather fall off here in south Louisiana), pumpkin spice flavored everything is stocking the store shelves, moms everywhere are pulling out their kids’ winter clothes from last year (praying they fit for just a few more wears), and everyone around is sniffling, coughing and sneezing. Before I was inducted into the “special needs moms club” I LOVED this time of year. However, I now dread it. Okay, I don’t dread it, I HATE it.

You see, my kiddo is part of the approximate 20% of children in the USA who are considered to have complex medical needs. My Connor was born with multiple “specialties” that cause him to be extremely medically fragile. He is the reason I hate this beautiful weather and time of year. The cold and flu season is reported to be from October until the beginning of Spring each year, and you can bet that you’ll find my family at the doctor’s office at the end of September getting our vaccines to ward off any and all types of flu, viruses, colds, and epizoodies (our family word for any sickness). But we can’t live in a bubble, and we must go out into the world praying that these epizoodies stay far, far away from us, especially my medically fragile child.

What many people may not know is that these medically complex children, especially those with developmental delays, don’t get sick like our typical kids. They can’t just get a decongestant or antibiotic, get some rest, drink extra fluids, and bounce back within a few days. No, they absolutely cannot. These kids battle an illness. They go to war when an infection or virus takes over their body. They have to fight it off with every ounce of strength they can muster up. A simple cold, also commonly known as rhinovirus, can land our babies in the hospital, on oxygen, and receiving chest physical therapy (which is basically pounding their chest and back hoping the gunk doesn’t find a home in their lungs) every few hours. It’s a big deal. But wait, what happens when the gunk does make itself at home in their lungs? Well, that would lead to a nasty little condition called PNEUMONIA. It is life threatening for anyone, but when our medically complex children get the P word (by way of cold virus, flu, aspiration, etc) it could be detrimental and the “life threatening” phrase is never far from our minds as we hover over our children in the Pediatric Intensive Care Unit.

So I have a plea for all you parents out there. This is coming from my momma heart, deep down where I hold all of my hidden thoughts. The place where I keep the thoughts I have, but dare to never say because they might hurt someone’s feelings. So here goes….KEEP YOUR SICK KID AT HOME. PLEASE!!!! You may think, “Oh, he just has a cold and the sniffles. He can go to that birthday party.”  Well, sure he can go, but can you just think for one second about the other kids that might be there? You can obviously tell my child is special and complex because of his big, black 70 pound wheelchair, but what about another medically complex child that has no outward sign? Like a child with an immunodeficiency disorder or epilepsy (illnesses cause an increase in seizures)? Or you may send your child to school despite her 100 degree fever or her vomiting before breakfast. Perhaps you haven’t thought about this aspect before, but you must know that your child’s sniffles are my child’s PICU stay.

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I understand that parents out there have no intent to spread their child’s illness, and I know many parents work and have to take off when their child is sick. I totally understand. Ask me how many times I’ve taken off for my sick child since August or how many times I’ve had to take off to spend weeks in the hospital? Yep, I know; it’s hard taking off, but the fact is that our kids (typical or complex) need us there to help them recover when they are sick, and goodness knows we don’t want their illness to spread. This is also a great time to talk with our kids about tips on preventing the spread of viruses/illnesses:

  • Avoid close contact with others, such as hugging, kissing, or shaking hands.
  • Move away from people before coughing or sneezing.
  • Cough and sneeze into a tissue then throw it away, or cough and sneeze into your upper shirt sleeve, completely covering your mouth and nose.
  • Wash your hands after coughing, sneezing, or blowing your nose (and wash frequently).

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So if you are reading this, please know that I’m being sincere in my request, but also brutally honest about a very serious topic that affects my son and the other 20% of children (adults too) out there with complex medical needs during the cold/flu season.

Now while our kids are healthy and gunk free, let’s get to some pumpkin patch picking and enjoy this beautiful weather!

What do you do to protect your family during cold and flu season?

 

Katie, a self proclaimed "momma bear", enjoys living her busy, country life with her husband of 10 years and 3 sons just outside of Baton Rouge in Tangipahoa Parish. Katie attended Southeastern Louisiana University where she obtained a degree in Elementary and Special Education. Little did she know how her love of children with special needs would grow shortly after she graduated college. Her middle son, Connor, was born with a rare brain disorder called Schizencephaly-he is wheelchair bound, nonverbal, blind, battles retractable epilepsy, and is fed through a feeding tube. Katie and Connor endure the many trials they are put through with a smile and joy in their heart. Along with being an active member in her church and working for an online public school, Katie regularly advocates for those who experience developmental disabilities at the Louisiana State Capitol. She is the Region 9 leader for Louisiana Citizens for Action Now (LaCAN) and is a member at large for the Governor’s Advisory Council on Disability Affairs. When life's challenges seems too much to bear, Katie remembers this quote to keep forging ahead and being the voice for those who have none, “God often uses our deepest pain as the launching pad of our greatest calling.” -unknown

46 COMMENTS

  1. Keep your child home then. If my kid has a sniffle, they are going to school.
    I work and am allowed 6 days off per year. This means if I’m scheduled a holiday and want off, I use my days. I use them up for christmas, mothers day and easter..that gives me 3 more, for 3 kids in school. Never mind emergencies like when I had surgery and then husband did. .iI almost lost my job. I had to plead to keep it.

    So, sorry. Fever, diarrhea, or vomiting are the only things that keep my kids and self home. Otherwise, we go on as normal.

    I’m sorry your child is compromised, but it’s not my job to make adjustments. I won’t even mention peanut allergies these days…. only thing my toddler likes and it’s cheap. Can’t send it to school though . Not a battle I’m fighting, but it just sucks. Yea, call me a bitter monster, it’s ok… I’m not fragile.

    • So you think everyone in the world should be punished because you have crappy benefits? It’s not our jobs to make adjustments for you either.

  2. Sounds like its time to be a parent and keep your children at home if they are that prone to getting ill. Time to quit your jib and home school. Instead of critizing other parents look the mirror and and deal with your personal situation yourself.

  3. This article is really spot on! My son is a Type 1 Diabetic, has Lupus and also has Hypogammaglobulinemia. When he gets sick, we are almost guaranteed a few days in the ICU with Diabetic Ketoacidosis. I really hate seeing him hooked up to all that equipment, and I really hate stating at a heart monitor for 36-48 hours, praying that he decides to fight his way back, instead of giving in. Please, Please keep them home if you can,, and PLEASE teach them how very important washing their hands is, coughing into their arm and not their hand,,, all of those little things that can mean the difference between life and death for us!

  4. My kids aren’t even special needs and I couldn’t agree more! I can’t imagine what it’s like for all the poor families who have to battle extra hard bc other people are too inconsiderate to keep their germs at home. I understand not every job gives sick days. I used to work for a place where I had no insurance and you got in trouble for caking off without Dr notes, but that’s still no excuse for getting other kids and parents and elderly people sick that could die from not being able to fight it off, or even healthy adults who then also have to call off their jobs now for getting your sickness. This whole go to work or send your child to school, daycare, or events suck has to stop! Think of how many flu strands and colds that would end if people stopped spreading them, then they mutate in your bodies and become new strands, and the cycle continues. Even getting a flu shot isn’t 100% guaranteed that you won’t get the flu bc they only estimate which viruses will be popular that year. I really wish employer’s would figure out that they would have less people calling off for getting sick if they would let the people who are sick or have sick family members heal without spreading it.

  5. Our son is 3 and has never had the luxury of having “sniffles” at home. The last 2 years our closest PICU has gotten to know him very well with all of the rhinovirus infections and a couple RSVs we’ve encountered.
    Thank you for this article, just for the sake of knowing we’re not alone.

    #1 biggest battle for us is how tight to make our bubble. Just “getting on with life” would see us living at the hospital full time with a 3 and 5 year old… we’ve chosen to homeschool and we dont attend public events with the kids that are indoors. Visitors to our house must be symptom free for 24 hours and we always have to either phone everyone ahead when we go somewhere to so health-checks or be ready to turn around for home if we see coughing or sniffles. My kids deal amazingly well with interrupted plans now and they get that they’d rather be at home healthy than live hospital life.

    It is still overwhelming to think of the future. Hopes for positive changes have been dashed as of yet. BUT I’ve found much comfort and encouragement in just making home time fun and special. I play on the floor with my kids and have time to bake with them and other homey things that a busy Mama might not get to have. My kiddo’s toddler years are not zooming by; we try to appreciate this time exclusive to our family.

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