Our Experiences with RSV

In the preemie world, it seems that to many, RSV is a black box of wonder…you always hear about it, but really only know that you don’t ever want your kid to get it.  Unfortunately, I’ve, somehow, drawn the short straw and have not only experienced RSV with one preemie, but with both of my boys so I thought I’d share my experiences and mom-to-mom give you a few things to remember about RSV.

Kellen’s RSV Story:  The guidelines have, not-without-argument, since changed but when Kellen was born at 34 weeks in January 2009, he did qualify for Synagis.  Being that he had no older siblings and I was home on maternity leave for 16 weeks he was very healthy his first winter.  However, his second winter he did get RSV right around his first birthday.  He hadn’t been feeling well that day so I checked on him before going to bed and discovered he had vomited, presumably from coughing.  When I touched him he was burning up and he was wheezing.  It was late, so we called the nurse line and she asked to listen to his breathing through the phone.  The wheezing was mild but audible so she told us to take him to the ER where he was given a neb and, only doctor administered levels of, Tylenol and ibuprofen to bring the fever down.  They swabbed his nose to test for RSV and did chest x-rays to make sure he didn’t have pneumonia – they were especially concerned because of Kellen’s prematurity.  Once his fever came down and he responded positively to a couple of nebs, we were sent home with a nebulizer and albuterol.  It took a few days to recover, but with the help of a weekend, Kellen only missed 2-3 days of school.  It was our first ER visit, so a scary night, but in the end, much to everyone’s relief, he tolerated the illness about as well as could be hoped for any (preemie or not) one-year-old.

Owen’s RSV Story:  As a 24 weeker who was still on oxygen, Owen also received Synagis his first winter.  In January, he had a non-RSV bronchiolitis that resulted in an 8 day hospital stay and horrible, high-pitched cough that lasted 4-5 weeks.  Finally recovered, we had about one good week and then I woke in the morning to the sound of wheezing coming through the monitor and then I heard a very familiar cough.  His breathing was a little labored so I decided to take him in to the clinic.  They did a rapid RSV test and it came back negative.  The doctor didn’t like the fact that Owen went from great to not great while showing cough symptoms for less than 12 hours and sent us to the ER with a recommendation for admission because he thought, whatever it was, was going to get worse.  After two nights, Owen hadn’t gotten much worse so we were sent home late in the evening.  The next afternoon was one of the scariest of my life.  Out of nowhere, Owen started wheezing terribly and had a respiratory rate in the 80’s.  I gave serious thought to calling 911, but got him a little more stable and rushed to the ER,  We were in the ER for over 8 hours with nearly continuous nebs trying to stabilize him and finally at 7 liters 70% oxygen (8 liters is typically as high as they will go before intubation) Owen was sent to the PICU.  The PICU retested him for RSV and it came up positive.  He was in the PICU for 14 days and then moved to the general peds floor where he struggled to come off high flow so on the 28th day we said, he’s otherwise stable, he’s going to have to come home on high flow.  Owen never came off high flow in the three weeks we were home before he ended up back in the PICU, this time coming even closer to intubation by needing Bi-Pap with a rate on his first birthday.  The general consensus was the cause was a mild virus that Owen could not tolerate due to the recent RSV course.  Just before getting that first non-RSV illness in January, we were told Owen had about 1-2 months left on Oxygen.  10 months later, he is still on oxygen 22-24 hours a day.

Things to Remember About RSV:

  • For preemies and newborns, RSV is as scary as they say – While not to the same extent, for both boys we had scary hospital visits.  Watching your child fight to breathe is terrifying.  Insurance companies would not fork out thousands of dollars a month for medicine costs if they did not think it was cheaper than the alternative.
  • A baby can still get RSV even when receiving Synagis – What doctors told us is that Synagis will greatly reduce the risk of RSV, but does not guarantee not getting it.  However, Synagis will reduce the impact of the RSV if it’s acquired.  All of Owen’s doctors agreed that Synagis was the only reason Owen was not intubated and that he would have fared much worse if he had not been getting his shots (I shudder to think).
  • In people over the age of 3, RSV will show up as a runny nose that may or may not be accompanied by a cough – How many times have you heard people say, “I’m not sick, I only have the sniffles”?  Please do NOT let these people around your baby.  The whole time Owen was in the PICU my nose ran like a faucet.  I had no other symptoms – I was not tested, but consensus was, I likely had RSV.
  • Talk to your child’s doctor – I’m just a mom who can only give you her two stories with RSV.  According to the CDC, almost all kids are infected with the virus by their second birthday.  Ask the doctor his/her concern level if your child acquires it.  If there is high concern, but your child no longer qualifies for Synagis, you may want to ask if he/she thinks it’s worth petitioning for it.

I’ll leave you with a favorite resource of mine that helps differentiate Cold, Flu & RSV.

Healthy wishes to all!  Owen and I have officially started our RSV & Flu season lock down and are already checking things off the bucket list.  Feel free to say hi, if you’re feeling lonely while in your own lock down.

Sometimes, there is no nice way to say it:

Sometimes there is no nice way to say it.

© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

2 thoughts on “Our Experiences with RSV

  1. We wont have to get a vaccination this year for our baby boy. But we had our six month corrected follow up last week and the paediatrician said they already had their first few cases of RSV. So its already here early!!

  2. Pingback: (R)eally (S)hitty (V)irus | Handpicked Miracle

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