So what is RSV?

I’ve been writing about it for a while now, but what exactly is RSV?  Have you heard of it? No? Not surprised, neither had I.  

Respiratory Syncytial Virus, or RSV, is as common as the common cold — in fact, it’s so common that most of us get it each year and merely acknowledge it as a prolonged, miserable cold rather than by name.  But while RSV can be dismissed with a few tissue boxes and a degree of annoyance by us adults, little guys with little airways are at a greater risk of complication and may require hospitalization due to the severity of its symptoms.  What makes it all the more terrifying, in my opinion, is that most of us aren’t even aware of RSV as an illness until we’re standing in the ER confronted with it in it’s full severity despite the fact that the CDC reports that all children - and therefore all parents - will have had at least one RSV infection by their second birthday. 

When a child is exposed to the virus, it takes 3 to 6 days of incubation before symptoms really begin to appear.  Initial symptoms of RSV are consistent with a minor cold:  runny nose, decreased appetite, cough, sleepiness and irritability.  Although this is sometimes all that occurs, in premature babies and infants under the age of six months the virus’ mucus begins to build up in their tiny airways and inhibits their ability to breath. So as the virus keeps escalating in severity until day 5 to 7 after symptoms first appear, it isn't surprising that the CDC reports as many as 25 to 40 of every 100 cases progress into full on respiratory infections such bronchiolitis or pneumonia with additional symptoms of fever, wheezing, rapid or difficult breathing and a blue-gray “dusky” tinge to their skin due to a lack of oxygen.  And seeing as infants are unable to adequately move mucus from their lungs on their own and home suctioning techniques have a limited scope of efficacy after a certain point in the virus’ intensification, it is estimated that there are over 125,000 infant hospitalizations for RSV in the United States on an annual basis.  And out of these acute cases, as many as 25 out of every 10,000 cases result in the death of babies under the age of 12 months. 

For those children who survive the average 1 to 3 week hospital stay for RSV(+), the long term consequences for such early exposure to it leaves them vulnerable to repeat infection and additional medical complications later in life, particularly asthma.   Unfortunately because RSV is a persistent virus that is contractable at any time of year there is no slack time for these little ones to develop their lungs and airways without risk of exposure — HOWEVER, there is a much lesser likelihood for those babies born between the months of May and September to become infected as newborns (defined as birth to 3 months of age) whereas those babies born in “peak season” are not only more likely to become infected but to suffer from repeat infections within the October to April timeframe.  For late RSV season babies like FG, the risk of infection does diminish for the summer months, but as they’re still infants for the majority of the subsequent RSV season and their respiratory systems are left vulnerable from the first infection, their risk for another severe infection is again heightened and worthy of professional concern.  

So, what can we do about RSV? 

Treatment wise, you’ve seen pretty much what there is to offer with the support FG is currently receiving:  external oxygen, breathing treatments and suction.  Premature babies under the gestational age of 32 weeks may be able to receive a drug by the name of palivizumab that can help prevent the development of serious RSV, but it does not outright prevent infection with RSV and it cannot cure or treat children already suffering from RSV.  It is also good to know that for the majority of older babies insurances do not cover the palivizumab and it is, unfortunately, largely cost prohibitive without their financial aid.  Prevention is then the only thing we as caregivers and responsible communities can address.  

So how do we prevent RSV?

* Avoid exposure. Limit your contact with people with fevers or colds, this is especially important for premature babies and all infants in the first two months of life.  Indirect or direct contact with infected nasal or oral secretions (i.e. through kisses, shared drinking glasses or “high touch” objects) causes avoidable transmission. 

* Avoid transmission.  People infected with RSV are contagious for 3 to 8 days, however, some babies with weakened immune systems can be contagious for as long as 4 weeks.  If possible, children and adults demonstrating infectious behavior should refrain from participation in group environments and contact with high risk populations: infants, children with compromised immune systems and the elderly. Techniques to avoid transmission include: 

* Wash your hands frequently.  Do so particularly before coming into contact with babies, before and after exposure to large groups of children in a school or day care environment, and teach your children the importance of hand hygiene.  It is also a good idea to avoid touching your face between opportunities to wash your hands. 

* Cover with your elbow when coughing and sneezing. RSV can be spread when an infected person coughs or sneezes into the air, spreading virus-containing droplets that linger in the air and contaminate surrounding surfaces.  Other people become infected when the droplet particles contact their nose, mouth or eyes.  

* Keep things clean.  Make sure that all “high touch” surfaces in your home are regularly disinfected; such surfaces include kitchen and bathroom countertops, sink faucets, doorknobs, stair railings, toys and phones.  Also ensure that all used tissues are properly discarded right away. 

* Further proactive prevention techniques include avoidance of crowds, consistent disinfection of children’s toys, regular washing of bedding and clothing, distinction between “outside” clothes and “home” clothes for older siblings.  Also enforce zero tolerance for smoking in your home and around your baby as infants who are exposed to tobacco smoke are at a higher risk of contracting RSV and more severe respiratory infections. 

So what?

At this point in our crash course education on RSV, HB and I are feeling thoroughly flummoxed that something so common and universally applicable could be so utterly foreign to us as parents and as self-identifiying educated, health conscientious Americans.  I mean we pay close attention to what preservatives and chemicals go into the food we purchase, we know the difference between a carbohydrate and sugar, we use sunscreen, we model healthy exercise behavior for our children, and they regularly wash behind their ears... and yet, the sniffles have completely taken us out at the knees.  The post-traumatic correlation between ignorance and guilt that is besieging my conscience as I stand here watching FG breath in his sleep is enough to bring out the white flag of surrender and promise this little guy a lifetimes supply of cartoons and chocolate to make up for what, I feel, is an unacceptable oversight on my part.  Instead of feeling retrospectively slothful, I could have done more of the preventative steps to ensure his safety... and instead of being blind sided, I could - should - have known what we were up against and recognized the signs of danger sooner than the eleventh hour.

But, all self deprecation and guilt-assuaging aside, I know the enemy now and I sincerely want to take this opportunity to get the word out to you brave souls resiliently reading my rambling because, Lord help me, RSV is the worst thing I've endured -- and I'm not even the one who is sick!  RSV is no joke and, even if you aren't around a little guy on a daily basis, I guarantee someone you come into contact with is and they - we - cannot afford to see something as seemingly harmless as a "cold" rip our world asunder with the loss of that which is most important: our children.  Please educate yourselves and those around you about the Respiratory Syncytial Virus and, as a village, help keep these little innocents safe from this all too real, all too prevalent boogieman.

To learn more about RSV please check out these additional resources: 

        * The CDC website for RSV prevention and treatment as well as their Podcast by Dr. Eileen Schneider

        * The comprehensive RSV Protection website for premature babies and infants

        * The Mayo Clinic definition and explanation of RSV symptoms, risk factors, complications and treatments

PICU Update

Last Thursday evening, FG was admitted to the hospital with RSV, bronchiolitis, a partially collapsed lung and a whole list of "could be, so we'll treat for it to be on the safe side" illnesses.  Initially put in an isolation room on the regular Pediatrics floor, the first several hours of treatment and attempted stabilization demonstrated that FG had a greater need for external support than the wing could provide and necessitated that he be transferred to the Pediatric Intensive Care Unit.  Moving over here first thing Friday morning, we've been camped out here ever since watching his little chest rise and fall.  I have yet to leave his side for more than the occasional trip to the bathroom (which is soberingly located over on the Pediatric Oncology Unit) while HB has made the long trek home a few times to check on Grandmama, GW and GV.  They, thank God, are hanging in tough with support from some wonderful local families (SP, you are an angel), but it's tough explaining to them what's happening here as things with FG are still quite tenuous. 

Beginning his treatment with 8 Liters of heated, humidified High Flow Therapy at 40% FiO2, the PICU Intensivists have explained that it's still too early to know where FG is in the 10 to 14 day life span of the Respiratory Syncytial Virus.   Knowing the worst symptoms typically come between days 5 and 7, the doctors are unsure if he's past the peak and will remain as he is for a few more days before progressively getting better or if the worst is yet to come...  as he is currently maxing the High Flow treatment option, we're playing the high stakes game of wait-and-see if escalation to the CPAP (Continuous Positive Airway Pressure) mask or intubation becomes necessary over the coming days. In the mean time, the doctors have started an EZPap therapy that uses positive airway pressure to force lung expansion and reinflate his collapsed lung as well as an almost constant routine of nasal and deep suction to remove excess mucus. You can imagine how miserable both of these treatments make FG... poor little guy.

We're also struggling to keep his feeding tube accurately placed in his stomach.  His many leads prevent him from wearing the hospital's mitten-onsies and, with his fingers exposed, his comfort position of his fists near his cheeks enables his ninja-like paddy paws to pull both the cannula from his nose and the feeding tube from his stomach.  And while I'm concerned about the bright red, raw color of his cheeks from the abrasion of his cannula's adhesive, the constant delivery of oxygen and his ability to stay hydrated and nourished trump the superficial irritation and have required some ingenuity with socks and careful use of A & D Ointment to address all of these concerns.  I'm sincerely hoping that the socks will at the very least save him from the unnecessary discomfort and additional radiation needed to insert the feeding tube for the fourth time.

One bit of good news at this point is that the final results of the spinal tap culture came in earlier today and the doctors now know that he is not sick with bacterial meningitis as they initially feared.  As illnesses of this kind of severity move incredibly quickly in babies this young, the ER doctors didn't want to loose critical days waiting for the results if the tests had been positive so they'd placed him on a multi-day course of a broad spectrum antibiotic that would kill any and everything that could possibly be making him sick.  As we're now certain the cause of all of this is viral, I'm thrilled he'll be skipping the next couple doses of medication as only time will tell how his body and the good bacterial will respond to such strong antibiotics.   

More to follow.  

Emergency Hospitalization

As the mother of three, I came out of the delivery room onto the maternity wing of the hospital as a well seasoned, veteran parent.  Treated far more deferentially than a first time mom by the nursing staff, I was given space to do my thing with our newborn and, right from the get go, I felt confident and comfortable with my knowledge, skills and the idea of introducing our latest addition to the wide world.  And given all of the experience his active, outgoing and curious older siblings have provided us over the past five years, I doubted there was anything that would surprise me as we brought home our perfectly healthy, full term baby boy.  

Unfortunately, I was wrong. Horribly, horribly wrong. 

GV circa 02/2013

While we were at the hospital for the induction and post-delivery day, our oldest boy came home from his Valentine’s Day party with a bit of extra pre-school love in the form of a cold. Congested and occasionally coughing, it didn’t raise any significant red flags when he shared his germs with our daughter (sure, they fight over the train, but this they share) and she too came down with a case of the sniffles.  Knowing it’d be unpleasant for the baby to need aspiration, we asked the big kids to wear masks and wash their hands, but despite our best efforts to contain their symptoms, their excitement about the baby resulted in not only the introduction of them, but of their congestion to FG as well. Starting the sick-little-guy routine, we turned on our humidifiers, administered saline and sucked the increasingly green mucus from his tiny nose with the notorious, yet incredibly handy NoseFrita (and, for the record, the poor kid does not like aspiration the way GV did).  So already sick for the first time going into his two week well-baby appointment, the pediatrician discovered that FG had a nasty ear infection to which she prescribed an antibiotic and instructed us that “if he’s not better after 24 hours or if he develops new symptoms, call back.”

Later that afternoon, HB and I found ourselves independently looking at FG thinking that his color wasn't quite right - he seemed almost grey.  Finding a change in position to resolve the issue or that the artificial lighting from one room to the next was largely to blame, we administered his first dose of antibiotics in hopes that the medicine would diminish his symptoms by the morning thus calming our overtired nerves and trigger-happy fears.  Sharing our concerns briefly before bed, we agreed that FG wasn't demonstrating other red flag behaviors - poor nursing, infrequent diapers, difficulty waking up and ferver - and that we'd keep a close eye on him if and when things changed.

The following day, I attempted to nurse FG every so often but found his latch to be weak (he'd had a frenulectomy at his well baby appointment the day before, so I wasn't terribly concerned) and his general demeanor to be sleepy.  Given that he's still quite new and supposed to be sleeping a lot, I didn't begin to aggressively attempt to rouse him until early afternoon.  Using our typical wake-'em-up tickle up the spine or diaper change tricks to no avail, I told myself not to panic and I began to escalate my pestering techniques - ultimately putting his head directly under running ice cold water - only to have eye lids flutter in minimal response before returning to a deep sleep.  When HB walked through the door shortly there after, I presented FG to him and, while difficult to be sure given the overcast, grey light of the day, we agreed that his color was off again and that the confluence of symptoms he was presenting warranted a follow up call to our doctor. 

With a "come directly here or get to an ER if things get worse" response from the triage nurse, HB hastily buckled our baby into his car seat as I scrambled to get our oldest to tell Grandmama we were leaving - immediately.  Sitting in the back seat of our car watching for any change to his breathing patterns, HB ignored the speed limit on I-95 and got us to the doctors office in about two thirds of the time it usually takes to get to NOVA.  Dropping me at the front door with the car seat, I bit back tears of fear as I impatiently rode the elevator to the right floor.  Walking in, the receptionists didn't ask who I was but quickly glanced at FG and said to "let the doctor know he's here." 

Escorting me back to an exam room, the nurse began to run through the typical baby appointment routine: "Okay, let's have you take off his outfit and get down to a dry dia..."  But she cut herself off mid-sentence and dashed from the room.  Seconds later three other nurses and the pediatrician were entering the tiny room with muddled looks of it's-okay-mommy/holy-shit on their faces.  Ordering for oxygen, a nebulizer and a pulse oximeter, Dr Fox held a stethoscope to FG's chest as HB joined me in the exam room.  

Directing his comment to a nurse "His pulse-ox is 61.  Call 911."

The next several minutes were a blur as firefighters and paramedics streamed into the room with what seemed to be an endless repetition of questions as they loaded FG back into his carseat and prepared to take him by ambulance to Fairfax INOVA.

The last time I rode in an ambulance was when I had the placental abruption during my second pregnancy and, while that was scary, this trip was far worse.  As the patient, all you can do is lie there, watch the lights and attempt to remain stable with whatever willpower you can muster; but as the caregiver who is, literally, along for the ride it is the most helpless, terrifying experience ever.  Just listening to the sirens blare and watching the other vehicles through the back window as they jockeyed to regain their spots on the road made me realize the preciousness of time and unleashed a torrent of regret and what if's... regret about not bringing him back to the doctor the previous day and not going directly to the Emergency Room... and what if... if... if...    

Upon getting to the Pediatric ER at Fairfax INOVA, a team of nurses and physicians swarmed our son.  Informing us that they were completing a full respiratory work-up and beginning worst-case scenario treatments to stem any serious illnesses before they have a chance to gain a leg up on treatment options, we could only stand by and attempt to comfort our baby as the doctors took x-rays, ran an EKG, took blood samples and drew a spinal tap.  

With cables and cannulas, needles and vials, cuffs and Lord knows what else coming and going from the room with various scrub-clad personnel, HB and I were in an overwhelmed trance when a sort of celebratory "whoop!" went up as a nurse reported some results to the team attending FG:  "RSV POSITIVE!" 

Taking us aside, one of the two pediatric trauma physicians in the room explained:  "So what we're looking at here with Baby F is a case of RSV - Respiratory Syncytial Virus - which is pretty serious, but the best answer we could hope for; okay? From what we can see on his x-rays, he has a partially collapsed lung which is typical with this disease and, since this is viral, there really isn't anything more than oxygen that we can do to get him through this. We're ordering him a bed upstairs right now and, hopefully, you'll be able to go home sometime next week." 

... processing... processing... processing...  

Our two week old has a virus that just caused one of his lungs to collapse, to loose almost 40% of normal oxygen saturation and to require a cannula to keep him breathing until it passes?  Right, gotcha. 

He's been upstairs in the Pediatric Intensive Care Unit (PICU) for a day now and, while he appears to be stable, I can't help but perpetually rationalize to myself that the ICU isn't some place they send patients as place holders... The reality is he's sick.  Very, very sick.  He needs oxygen via cannula to breathe which, preventing him from nursing, requires a feeding tube  into his stomach.  He is on a one nurse to two pediatric patient ratio and is visited at least four times a day by an intensivist attending or resident... in other words, he's exactly where he needs to be, getting the exact care that he requires and all we can do is wait for the worst to be over.

We simply pray that is soon.