The Lowdown on RSV

Friday, December 28, 2012

If you are in the micro-preemie community, especially those with chronic lung diseases or congenital heart defects, you likely know what RSV means.  What it is. What it can do.  You know how mean and ruthless this "common cold" can be.  You've likely heard every horror story in the book and have been inundated with fear mongering from every.single.medical.professional your child sees.  It's with good reason these doctors stress the severity of this evil virus.  The facts are there.  For these  babies, who despite their outward appearance of perfect health, are still extremely fragile on the inside.  RSV is serious business.  And scary business at that.   

If you are like me, you've probably lost sleep over RSV.  You've lost sleep by praying it away, coming up with the best game plan so that your two older children (who will no doubt be exposed to something) can lead a normal childhood while you still have your medically fragile child's health at the forefront. 

In previous weeks I've lost sleep or have been awakened in the middle of the night to these thoughts......true story: 

"How high will her concentrator go?"

"Will her O2 tank go to 4 or 5 liters if need be?  (make a mental note to call home health and get a gauge that will).

"What's the quickest route to Children's"

"Do we ever test this hospital here or do we directly make the 1 hour drive to Children's"

"Locate the Ambu-Bag" 

"Find all emergency gear and assess any new needs."

"Brush up on CPR." 

The lowdown on RSV

Alli had been feeling pretty rough for close to 24 hours; but, after her 4 hour Christmas nap, I knew something wasn't right.  She went downhill fast, waking up coughing and quickly going from needing no oxygen to requiring 2 liters (and then some) to keep her oxygen saturations up.  We jumped in gear and took a family Christmas evening trip to Children's ER.  Luckily, we were triaged, quickly seen, and home within 3 hours.  

I'll follow up with a full post on our experience with RSV after she gets better, but I do want to leave you with my RSV lowdown (i.e. symptoms and when to call the doctor, or 911, or head to the ER.)  

Info taken from WebMd (you know the end all be all in medicine).

What is RSV??

Respiratory syncytial virus infection, usually called RSV, is a lot like a bad cold. It causes the same symptoms. And like a cold, it is very common and very contagious. Most children have had it at least once by age 2.

What are the symptoms??

RSV usually causes the same symptoms as a bad cold, such as:
  • A cough.
  • A stuffy or runny nose.
  • A mild sore throat.
  • An earache.
  • A fever.
For healthy children and adults, RSV is generally nothing to be concerned about.  But it can lead to serious complications and breathing problems in certain populations; infants, preemies, children or adults with chronic lung disease and/or heart problems, and immune suppressed children or adults.  

Alli's symptoms:
  • Runny nose. 
  • Terrible deep wet cough 
  • Fever
  • Wheezing
  • Sheer exhaustion (still asleep at noon).
  • G-tube feeds are not being tolerated.
  • Grunting and heavy breathing (65+ breaths).
  • Belly breathing and retractions. 

Alli's breathing symptoms merit an ER trip or 911 call, as directed by WebMD.  However, her doctors trust us to keep her at home and manage symptoms from here with oxygen, breathing treatments every 3-6 hours, deep suctioning, and steroids.  When and if her sats can not be maintained consistently at 90 with what O2 we have here at home, she will need to be admitted.  We're more than thankful to be at home, even if she's sick.  Beats the hospital  

While she has come down on her oxygen needs some today, she is now back to being maxed out on her home oxygen, 2.5 liters.  Her tank goes to 3 liters so that buys us some time and air to get to Children's if need be.  Her pulmonologist said, the worst is yet to 6-9.   We claim the worst part is over.  Two things I know for sure.....RSV comes on fast, packing a mean punch hitting hard and heavy.  The other is, that this is very similar to the NICU Roller coaster....she gets worse, she gets better, she gets worse, she gets better, she gets worse......

PLEASE NOTE:  Just because we're able to stay at home for now, doesn't mean that's the best treatment plan for YOUR child.  At the moment, her lung doctor wants to limit her exposure to other illnesses that are lurking in the hospital, potentially worsening an already sick baby girl.  When in doubt, see your doctor, call your doctor, or make an ER trip.  

When to call the doctor??

Call 911 or other emergency services immediately if your child is having difficulty breathing, indicated by:
  • Breathing very fast (more than 60 times a minute).
  • Making a grunting noise.
  • Being unable to speak, cry, or make sounds, sometimes with drooling.
  • Flaring nostrils or lifting the shoulders when inhaling.
  • Having a gray, mottled, or blue color to the skin (look for skin color changes in the fingernail beds, lips, or earlobes).
  • Wheezing that lasts over 1 hour in a baby younger than 3 months old who also appears sick.
  • Breathing that stops for longer than 15 to 20 seconds.
Note: If breathing has stopped, call 911 or other emergency services.
See your doctor right away if your baby or child has moderate difficulty breathing, indicated by:
  • Breathing 40 to 60 times a minute.
  • Tiring quickly during feeding. The child either stops eating or sucks in air to catch a breath. The child loses interest in eating because of the effort involved.
  • Using the stomach muscles when breathing.
  • Having unusual color. The child's face, hands, and feet are pale to slightly gray or lace like purple and pale (mottled), but the tongue, gums, and lips remain pink.

I'm extremely thankful for 16 months of good health.  I believe wholeheartedly that 16 months has made her so strong today, even while still being so sick.  My mind wanders back to this time last year.  Thankful to God last RSV season was so mild and we escaped with only an ear infection or two.  We are also extremely thankful for Alli's monthly Synagis injections that arm her body with the antibodies to fight RSV. 

Please continue to pray with us for complete healing....that we've seen the worst of this....and no more damage to her lungs.  

"Again I say to you that if two of you agree on Earth concerning anything that they ask, it will be done for them by My Father in heaven." ~ Matthew 18: 19




  1. Wow. Im hopeful that Alli is on the mend soon and that you are able to stay out of the hospital. Many prayers being sent your way.

    Thank you for laying out these signs and symptoms. I generally feel like a well informed/prepared micropreemie parent but this post opened my eyes to just what to look out for and think about. I hope to not need any of this during this RSV season but Im glad I read your post as it can be so hard to think straight at the stressful moments of doing your own parent "triage"

    1. Thank you for the prayers! I too feel well informed/educated/prepared for things, but when it happens, it's tough to remember everything. Prayers for health in 2013 for your family!

  2. I can so relate to the dark thoughts that come with RSV. Owen had it last year and we spent 28 days in the hospital, half of that being the PICU, because of it and another 2 months at 2-4 liters at home. They weren't super thrilled with sending us home on 2-4 liters, but we had an older child that needed his family together under one roof. This week my nose started running with the same nasal drip that I had last year when Owen (and presumably I) had RSV and I have to admit I'm freaking out a little. Owen hasn't even shown any symptoms and I'm already freaking out. He's 20 months and understands that he hates the hospital now, so the stays are much harder on him and all of us. I'm already working out my strategy of not letting them admit him this year, unless necessary. The anxiety of a preemie parent is intense. I hope Alli is feeling better soon and your anxiety can lesson and I hope this is the last you hear on the topic from me.

    1. The anxiety is so intense. Prayers surround the preemie crowd for a healthy 2013!!!


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