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
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. Thank you for this! I have a 14-month-old preemie with respiratory illness. He woke up with a head cold this morning and I am am just hoping, hoping, hoping it doesn’t migrate into his chest like every other illness has. People don’t understand why he can’t go to day care or why neither one of us can be around anyone who has even the slightest cold. Thank you for helping educate!

  2. I completely agree with you! I worked in child care for several years in an infant room and I was shocked by how ill some of the children would be when they arrived in a classroom. I understand the pressure parents are under, as I am one however, the lack of care of their for their own child much less for the health of any other child, parent and staff members who comes in contact with thier child is what I found really upsetting. I recently got into a conversation with someone who did not vaccinate their children. I did vaccinate my child despite spreading them out over a longer period of time. I see it not only as protecting my own child but other children especially those who have an compromised immune systems. Specifically the comment she made that measles mumps and rubella are not serious diseases. This actually got my back straight up. I guess I am curious what parents of medically ill children opinions are on vaccinations.

  3. Thank you for this article. We have a son with a Primary Immune Deficiency so I get peeved when I hear others sending their kid to a party or an extracurricular activity while they are sick. We homeschool because of it but we can’t live in a bubble. Lets share germ-free air folks.

  4. Thank you! My youngest son has cystic fibrosis and I am constantly telling people to stay away if they are ill but it seems as though the message just doesn’t get through to some people. It’s like they don’t realise the seriousness of the situation. Thank you again for writing this.

  5. Good Lord do I know how this all feels. My son as born with a nasty little heart defect that required OHS when he was just six days old. I spent the first two years of his life in a constant state of terror after being told, while he was still in the PCICU that if he got sick, it pretty much ment another extended hospital stay because even a little cold could kill him. The first holiday we had that we visited people for, his uncle coughed a bit, then wanted to hold him-and everybody looked at me like I had lost my mind when I told him he had to put a mask on and wash his hands. Even though he is doing pretty well, everyone that boy is running more than just a little fever, we take a visit to the doctor. He is four and is pretty healthy-but it would take only one bad cd or case of the flu to change that. One.

  6. I read your article with interest. Although both my children grew up healthy and are now on their own, my husband has several complicated, serious medical issues, on top of being immune-compromised due to his blood disorder. I have been known not to walk down an aisle in the grocery store if I hear someone sneeze there. Sadly, we cut down on our visits to Church this time of year as well, to avoid the “greeting” hand shakes at the beginning of the service. It makes you paranoid in ways you could never imagine, when a simple illness could land your loved one in ICU.

    My heart goes out to each of you moms who have to watch your precious babies battle daily illness. Although I love my husband with all my heart, the love we have for our children is a different, fierce kind of love, and comes from a different place. I cannot imagine the emotions you deal with daily, as you help your little Warriors get through the day. I am very uncomfortable plugging my blog, but I have chronicled my husband’s illness there, http://www.livingamystery.com, if you would like to take a peek into a spouse/caregiver’s life. God bless you all.

  7. Thank you! My daughter has cystic fibrosis and does nebulized meds and that chest pounding (with a special vest) every morning and night when healthy. When sick with a cold she does it four times a day. And that cold can land her in the hospital….which thankfully we have avoided in her 5 years of life. We all get the flu shot and we homeschool to protect her health. She meets with other kids two days a week but I bring disinfectant and sanitizer and get all crazy with the stuff!

  8. Good article. I understand your concern but children and adults are exposed to multiple things when they walk out the door. I get that this is just an extra preventative measure to help but honestly unless you live in a bubble there is now way around it.

    • I know Debi….I sometimes wish I could put him in a bubble so he can remain happy and healthy forever. But I thought it’d be a good reminder for some parent’s during this nasty time of year! And thank you!

  9. Thank you so much for writing exactly how I feel. My daughter is a new transplant recipient and we literally kill her immune system every day with medicine. She will not be in school the rest of the year, but she will be going next year and my mommy heart will worry every single day. I wish more parents would keep their kids home when they are sick and I also wish they would vaccinate as well as my daughter cannot get many of the vaccinations that are available.

  10. i agree with Debi, i totally get both sides of the issue but can you imagine the lack of education our children would get if they had to stay home for every sniffle? I understand that compromised children have every right to be in school and it warms my heart to see them be able too but as a parent myself if i had a special needs child that has a very low immune system i wouldn’t send them school any how schools’ are germ breading places no matter how hard they try to be clean, it happens and im sorry if this sounds cold it in no way is meant too i just get mad when people say this kind of thing like it’s our fault if you child gets sick. and im just talking about the sniffles, if my child was running a fever or throwing up they wouldn’t be returning to school unless they were puke and fever free for 24 hours. but i refuse to let my child stay home for a simple cold, that is just sending them a message that when they get older it’s ok to miss work because your nose is running. instead how about we teach our children that when they are sick to cough and sneeze into their elbow and wash their hands frequently when sick and try not to be so close to classmates when they cough

    • Absolutely Bri. Teaching them proper precautions to keep the “cold” to themselves is crucial, and should be done very early! I get what you are saying, and I don’t think you sound cold. It is so hard to keep our kids home for the “sniffles”, but there is definitely a difference between being kinda sick and SICK! Know what I mean? Unfortunately, I did indeed have to make my son homebound for school a few years ago, despite him absolutely loving school. It hurt my heart because him going to school was so good for him because he loved hearing the other kids and it was great for the other kids too to be exposed to a child with different needs. I just wanted to send a reminder for parent’s this fall/winter to keep in mind this very important reason to be mindful of when their children, or heck even them, are sick. Thank you for your comment! 🙂

      • It is insane how selfish people are that they actually think spreading germs is more acceptable than missing school. Every school allows you the opportunity to make up missed work, tests, opportunities to meet with teachers to go over missed lectures, get important notes. That teaches responsibility. It teaches you that you are required to take it upon yourself to ensure that you get what you need instead of expecting someone to just hand it to you. It teaches consideration for others so you realize that you aren’t the only person who matters, and has needs that have a right to be met. Not to mention, while it is true you usually can’t catch the same virus twice, they are known to change in peoples bodies and mutate, and you can get sick again just by allowing others to catch what you have. So remind me again, why does spreading your germs sound like a better idea again?

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