The Big, Bad Wolf - RSV

Finally falling asleep after a long day of coughing.

I had never heard of RSV before Joey.  At our one month appointment with his Cardiologist back in September we had the usual echocardiogram and on our way out, his Cardiologist (an incredible doctor, by the way, incredible—he accurately diagnosed Joey’s heart problems at 24 weeks in utero) said that Joey should get the RSV shots.  He also said Joey would need to get them next year as well.  RSV is respiratory syncytial virus.  For most of us it just causes symptoms similar to the common cold.  For kids who have Down syndrome or are infants it can sometimes be a much more serious infection that is associate with inflammation in the lungs, wheezing and difficulty breathing.  It can also cause Croup, ear infections and pneumonia.  Here’s what I read about the symptoms:

RSV Characteristics and Symptoms

• Chest congestion and wheezing
• Dropping O2 saturation levels
• Difficulty breathing or rapid breathing. Apparent labor in breathing
• Coughing
• Temperature
• Look for signs that the patient is having an O2 problem. This can be seen in a number of ways. These include paling of skin or blue color around the lips

Most kids with RSV can be treated at home, but a small part of the population—somewhere between .5 and 2%-- need to be hospitalized and closely monitored.  Infants, like Joey, who have congenital heart disease, are at a much higher risk for developing a severe case of RSV (same with preemies and babies who have chronic lung disease).

That is where the RSV shots came into play.  To qualify, kids have to be premature, have chronic lung disease or have congenital heart disease.  We started the approval process back in September so that Joey could get his first shot in October.  The treatment goes for six months and every month from October through March he has gone into the pediatrician’s office to get his monthly dosage.  The medicine is called Synagis and it is a “monoclonal antibody against RSV”. 

Ironically, Joey just got his sixth and last set of shots for RSV one week ago.  Here we are, two days before April 1^st and he has RSV.  Lord, help us.  We’ve kept him home from church, home from family events and home from any type of fun outings. Basically the only places Joey gets to go are to doctors’ appointments.  We knew the Synagis shot wasn’t a silver bullet, but we were told that it was at least 80% if not more effective against getting the virus.

Joey's amazing Synagis nurse giving him last shot before the next RSV season.

Then there is the bitter pill of the Synagis itself.  It took 8 weeks to get approval from insurance for him to even get the first month’s shot.  But before we could get the shot I received a phone call from our insurance saying I needed to pay them $1,100 before they would ship the medication.  Huh? According to them, the medicine costs $5,000 and up per treatment.  As Joey gets bigger, he needs more medicine each month.  It was insane.  I spent hours on the phone trying to figure out how to get the cost down.  We finally got a “savings” card that is worth $225 each month toward our costs of the shot.  Since his first shot, every month we’ve received a different price for the medication.  It always averages somewhere between $500 and $1000 per month.  That being said, we told ourselves that it was worth it and we needed to try and protect Joey as best we could.  Lesson learned here is be diligent, keep calling and ask all kinds of questions before you ever agree to the first quoted price.

Since September Joey has had three major scares.  All three involved chest x-rays and the worst was when he was hospitalized over New Year’s with Croup and received breathing treatments and oxygen in the hospital.

This time, I truly thought we were out of the woods.  At least where the RSV stuff was concerned.  He got his last shot last week.  Throughout RSV season we’ve been crazy about keeping him away from other kids who are sick (although big brother Tommy had Croup last week and there was no separating them for an entire week).  Then, the big, bad wolf showed up at our door.  The dreaded RSV.

I’m hopeful that the months and months of those painful shots (it’s super thick medication) will pay off and that his case will not take a turn for the worse.  I hope and pray that his breathing improves and that the horrible cough starts to go away.  The RSV comes right as he has to start wearing his rocking blue helmet 23 hours a day.  This little man needs a break.  Our pediatrician told me today to be prepared if it takes a sudden turn and to keep a steady eye on Joey’s breathing rate.  He also said he would probably see us again this week.  I hope he’s wrong.

Unfortunately, along with having Down syndrome is a tendency for our little ones to have much smaller ear canals and smaller breathing passages, which makes handling the super sticky RSV mucus more difficult.  His ear canals are so, so tiny the doctor couldn’t even see his eardrum today.

 

Right now, Joey has a wicked, wicked cough that I can tell hurts his little chest and throat.  He’s working pretty hard to breath, but we haven’t crossed that line of truly labored breathing.  He sits in my arms and cries a small, raspy, wheezy cough.  I just worry about his little heart and the holes in it and how that already makes his breathing a little bit tougher than normal.  So, we cuddle and give him lots of love.  We count his breaths per minute.  Sixty is okay.  Sixty-five and up are not. 

If you think about it today, please send Joey a little prayer that he heals quickly and does not have to visit the hospital.  

Taking a break from Mr. Helmet.