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 LA), 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.

photo 1

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 parent’s 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).

photo (1)

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?

 

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41 Responses to Your Kid’s Sniffles are My Kid’s PICU Stay

  1. Kymberly Morgan November 3, 2014 at 10:14 am #

    I appreciate this article so much, and have shared it on my networking pages/blog as well! My daughter, Breanna Ray, was born with a rare form of Cerebral Palsy called Lissencephaly. She suffered yearly with a compromised immune system. Being hospitalized with pneumonia that started from what would be a “normal” cold to us was a common occurrence for Breanna. She ultimately lost her life on March 20th, 2002, from pneumonia/seizure disorder/complications from CP. I strongly advocate parents keeping their sick children indoors. Thank you for your article! And special prayers for your beautiful son xoxoxo
    Respectfully, Kymberly

  2. Marie November 3, 2014 at 11:01 am #

    Thank You! Thank You! Thank You!
    You stated so well what needs to be said!
    Thank You!

  3. Genevieve November 3, 2014 at 12:01 pm #

    Yes! Yes! Yes!

    This also applies to adults coming to work sick. Stay home. That is why we are given sick days. A cold is nothing to sneeze at. Pun intended.

    • Beth November 6, 2014 at 3:56 pm #

      Yeah, that’s why we’re given sick days. But some employers give you 3 a year. Sometimes I cannot stay home because I’m sick and while I hate it, that’s just how it is.

  4. Saretta November 3, 2014 at 6:46 pm #

    Thank you!! I have my own special needs child and this time of year is always scary. I don’t even let visitors into my home unless they ‘scrub up’ before they walk in. (I keep sanitizer and direct them immediately to the kitchen to wash)Too often a little germ is a big problem!

  5. Julie Dinkins-Borkowski November 3, 2014 at 7:26 pm #

    The only thing I would change is to say, WE go to war when they get sick. I do not mean to sound selfish because it is not about me, but not just the child fights this battle. The mom does as well, and it takes a lot out of you to do everything in your power to help them get well again. And when they are well, you do not get a break. You drag yourself up again to do all the regular stuff that needs to be done on a dally basis.

    • Jessica November 4, 2014 at 2:04 am #

      Completely agree. When my medical baby gets sick, I join the fight. Extra breathing treatments, up and down all night to adjust his oxygen level because I don’t want to give him too much but I also need to keep his sats at a good level. Then we battle with the side effects of antibiotics. Increased fluids because of diarrhea but can’t run it too fast in the g-button or else he’ll reflux worse and he could aspirate it. Aspiration=pneumonia and starting the battle all over again. And then there are steroids… they work fantastic with respiratory infections but now his low immune system is virtually non-existent and we have to keep him under house arrest.

  6. AmyJ November 3, 2014 at 10:28 pm #

    Thank you so much for this! My son was born 17 weeks early and I was a basket case his first winter at home. This is his second winter at home. I very much appreciate when our friends, family, and therapists notify us when they or their families are sick. He needs socialization and to be around other kids. So many places don’t get why I ask about cleaning procedures and well child policies. I often wonder when I will stop feeling panic when someone coughs. Maybe never.

  7. Jenny November 3, 2014 at 11:51 pm #

    Thanks for the great article. I would also like to add that the best way I protect my medically fragile child is by a whole food organic diet via his gtube. I use a high powered blender to give him real foods. Each year when school starts, I start giving him elderberry juice about a tsp a day to boost his immune system. I also give him garlic cloves mixed in his blend if he starts to get sick. I give him lots of fruits and veggies, grass fed meats, fish oil etc. There are many real foods to boost the immune system. Just wanted to say that hand washing and staying away from sick people help but boosting the immune system is the best line of defense. Another avenue is essential oils, and I am recently learning about homeopathy. Good to have many tools in the toolbox

  8. nina November 4, 2014 at 2:56 am #

    Thankyou. We are also in your shoes. Low immune system. We hate this time ov year. Even with her constant antibiotics they still come

  9. Jasmine November 4, 2014 at 8:03 am #

    Thank you, from the bottom of my heart, for posting this. My child is an organ transplant patient and is immune-suppressed. In addition to the hospital time and life-threatening aspect of the “sniffles”, she has PTSD, anxiety, panic disorder and Dissociative disorder from waking up during various surgeries because she and anesthesia don’t get along so well. A common head cold (CMV) put her in and out of the hospital for 4 months, required 2 PICC lines, chemotherapy and a subsequent rejection and leukemia scare. Yet, I was once asked by a mother who brought her kid to the library sick with a fever, why – if my kid has a problem like that – I would ever bring her to the library when people could be sick? Helloooooo!?!? Why would you bring your sick kid with a fever to the library?!?!

  10. Katie
    Katie November 4, 2014 at 11:02 am #

    I’m in awe of all of your comments ladies!!! Thank you so much for letting me know how much this blog meant to you. It has been weighing on my heart for some time now and I just decided it needed to be said. It is so hard to explain to others on a day to day basis. Taking care of our kiddos when they are sick is absolutely exhausting on everyone involved, so yes I agree, WE do battle the illness! My Connor has a respiratory infections right now and I must get up every 10 minutes to suction him, breathing treatments, checking O2, CPT…the list goes on and on. Love to you all!!! And praying your kiddos have a healthy (or as healthy as they can get) cough/cold/flu season! 🙂

  11. Sarah November 4, 2014 at 1:20 pm #

    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!

  12. Gina November 4, 2014 at 6:23 pm #

    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.

  13. Marcy November 4, 2014 at 6:43 pm #

    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.

  14. Lauren November 4, 2014 at 8:45 pm #

    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.

  15. Donna November 4, 2014 at 11:28 pm #

    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.

  16. Marie November 4, 2014 at 11:45 pm #

    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.

  17. nancy November 5, 2014 at 6:14 am #

    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!

  18. Debi November 5, 2014 at 12:17 pm #

    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.

    • Katie
      Katie November 7, 2014 at 10:47 am #

      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!

  19. Paula November 6, 2014 at 5:04 pm #

    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.

  20. bri November 6, 2014 at 11:20 pm #

    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

    • Katie
      Katie November 7, 2014 at 10:51 am #

      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! 🙂

  21. Emma Fahy Davis November 7, 2014 at 2:35 am #

    This brought me to tears, thank you so much for putting into words what we all carry inside us bubbling underneath the surface. Our 8-year old daughter has a primary immune deficiency and there have been many times we’ve electively kept her out of school because other children in her class are still attending despite being ill. This on top of the weeks and months she misses due to being chronically ill herself. I think it’s truly impossible for anyone else to ‘get it’ unless they’ve walked a day in the life of a medically fragile child.

    • Irma November 22, 2014 at 11:22 am #

      Same here, any simply cold can trigger a flare and that scares me to death… 🙁

  22. Sarah November 7, 2014 at 12:42 pm #

    Thank you so much for writing this. I’ve shared it on my Adventure’s of Henry Facebook page and my personal page. Henry is my oldest son, and he died five years ago this week of a common bacterial infection. He was three. See, Henry and his younger brother Jack both had an undiagnosed immune deficiency disorder. Sadly, no one discovered it until after it was already too late for Henry. Jack, now 6, continues to receive treatment every four weeks and will need them for the rest of his life. Like you, the smallest thing can land us in the ER. Jack shows no outward signs of his disease (x-linked agammaglobulenemia) though. We are at the mercy of the world around us and do our best to educate our community on the benefits of herd immunizations and proper procedures for illness. Thank you for helping. <3

  23. tommy November 11, 2014 at 7:47 am #

    I understand ur frustration but most people have a cold. And it isnt a illness for people who r normally healthy so y wud we keep children off school for a cold the children get into trouble for being off. A xold doesnt mean there sick im afraid. I have a disabled child but I wouldnt expect other people to change there life to suit mine.its just one of them hings. Sickness yesni totally agree but a cold thats normal at his time of yr x

  24. alicia November 22, 2014 at 10:20 am #

    I lost my baby boy not quite 4 weeks ago to rhinovirus. He was 6 months old and medically complicated. He didn’t even have a symptom. He went into respiratory arrest and cardiac arrest simultaneously 3x in 24 hours. Then they put him on ecmo so he could rest and get better. Each day he got worse. Pneumonia is scary, but rhinovirus is very dangerous as well.

    • Katie
      Katie December 5, 2014 at 6:49 pm #

      OH my heart. I’m so sorry to hear of the loss of your baby boy Alicia. Yes, any “simple” sickness can turn very ugly so fast with our complicated ones. Most people just don’t get it. Sending warm thoughts and prayers your way.

  25. Irma November 22, 2014 at 11:20 am #

    Omg! you did it! you described so well my anxiety and my fear of my girl getting sick, I hope more people read and be aware, medically fragile people does not simply get “flu” their life is in danger… Thank you for posting this 🙂

    • Katie
      Katie December 5, 2014 at 6:49 pm #

      Thank you Irma, and you are so very welcome!!!! It is a very real concern for us all of the time. Had to get this thought out for the world to see!

  26. Julie December 30, 2014 at 10:56 am #

    Love this article. My 9 year old son has leukemia, and we have spent around 80 days inpatient, mostly due to fevers from rhinovirus etc… He is in treatment and will have chemo for 3.5 years. We are cautious but we can’t stay inside all winter! I shared this article and hope many will read!!!

  27. Heidi December 31, 2014 at 9:39 am #

    “Medically challenged” Is what we call it in my house. I have a 10 year old asthmatic and a 3 year who is unable to digest most foods. We call it challenged because it’s a challenge to make she neither of my girls are lost to us. It’s been a battle since my first was born, but it’s not just winter, it’s spring, summer and fall it’s years of breathing treatments iv’s oxygen. A simple cold it deadly, a stomache flu can kill and there is nothing we can do. In 10 years I can’t remember a time I slept thru the night without a monitor going off. It’s hell!!! Thank you for posting this! It brings tears to my eyes to know i’m not alone.

  28. Miranda Morrison January 2, 2015 at 6:14 pm #

    I want to hug you!!! This made me tear up. Praying for your son.

    • Miranda Morrison January 2, 2015 at 6:15 pm #

      And just so I don’t seem as crazy- my daughter has autoimmune neutropenia. So we spend the majority of our time in isolation.

  29. Jennifer January 30, 2015 at 5:12 am #

    hi there I found this article on facebook. A friend had posted it. My family does not get a flu shot at all!! They say the flu shot doesn’t even work with the strand of flu anyways! Instead I use doterra essential oils with my kids and very seldom do they even get sick. Just a thought. If you would like more info or samples of oils please let me know I would love to send you a package!!

  30. Gill November 5, 2015 at 8:59 am #

    I absolutely LOVE this article & can totally understand & appreciate with everything this amazing mumma has said! My lg Sophie has DS which leaves her with a lower immune system than ur average kids BUT she also has arthritis & recieves a Methotrexate injection every week which lowers her immune system even further than it already was. I also used to love this time of year & I not only now hate it but loathe it! Sophie has ended up in hospital 3 times over the last 3yrs over these ‘bad months’ as we call Sept-April she has had croup, bronchiolitis, infection of the trachy, parafluvirus & the dreaded 1 for us DS mums RSV virus! Luckily last year we managed to avoid hospital due to having inhalers which have really helped even tho she has been poorly since end of sept last year until now! Constant cold & snotty nose, UTI’s, chest infections, ear infections, throat infections etc etc BUT as I said we have managed to escape a hospital visit! The main reason I’ve commented though is not only should parents take note of how the ‘bad months’ affect our little ones but also teachers etc! I had to move my lg to a different nursery due to peer pressure from nursery staff etc that I MUST have Sophie at nursery! Her last keyworker words to me were ‘we have a lot of kids come to nursery with snotty noses & colds!’ My reply was ‘yes but those kids aren’t going to end up in hospital on oxygen!’ This is when I found out this keyworker DIDNT KNOW that kids with DS had a lower immune system than typical kids! That was enough for me n refused to take her back to that nursery! Even if my lg didn’t have DS or health issues I STILL wouldn’t take her to nursery if she was choked with cold, even if she felt ok n well enough to go, for the simple fact I wouldn’t want other kids to catch her virus germs! I was told she needs to build her immune system up n be at nursery around other kids to do this! Eh how can she do that if she’s on medication that lowers her already low immune system? Thankfully the new nursery she is at are very understanding & we have already had meetings with staff & nurse etc explaining Sophie MUST be kept at home if she is chesty or badly choked with cold etc & they are amazing. So please this article should reach not only parents but education members also ? xxxxx

  31. Punky brewster November 29, 2015 at 7:40 pm #

    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.

  32. Veronica December 13, 2016 at 7:09 am #

    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.

  33. Maggie December 20, 2016 at 6:15 am #

    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!

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