Sick Baby: Our RSV Adventure

For 10 days now, we have been on an adventure we never dreamed we would be on.  Sounds familiar, huh?  It all started last Thursday when Finn started presenting cold like symptoms.  On Friday, he was super clingy, and definitely on a downward spiral.  Nana the Wonder Sitter greeted me at the back door when I got home from work by saying “It’s going to be a long weekend.  Finn is VERY clingy!” She had no idea how prophetic those words would turn out to be.

First off, a little education.  Babies born as early as Finn are really disadvantaged as far as lung function goes, and it takes a long time for them to get caught up.  The image below shows what baby lungs look like at 8 weeks gestation, 16 weeks gestation, 24 weeks gestation (about where Finn was born) and full term.  Finn was born at 26 weeks, spent 10 weeks on a ventilator (2 weeks on an oscillator), and has chronic lung disease.  This means he is VERY susceptible to upper respiratory infections, pneumonia, and RSV.

 

And, a little about RSV (via marchofdimes.com)

Respiratory syncytial virus (RSV) commonly causes infection in childhood. RSV is very contagious. Almost all babies get it before the age of 2. Many babies (and most older children) get only a cold from RSV.

Some babies with RSV develop potentially serious lower respiratory infections. Examples are:

• Bronchiolitis, an infection of the small breathing tubes in the lungs
• Pneumonia

These infections are especially dangerous in babies who were born prematurely, have lung or heart problems, or have certain other chronic illnesses. Your baby can get RSV at any time of year, but it is most common from October to March.

Symptoms of RSV usually last between 8-15 days. Most babies with RSV do not become seriously ill. But a few become very sick. They may need to be treated in the hospital with oxygen. In some cases, the baby will need bronchodilators (drugs that help open up breathing tubes) and antiviral drugs.

click for larger

 

Now, our time line of how we got to be in the hospital for 5 nights (and counting…)

Thursday,  January 31: Finn starts having cold-like symptoms

Friday, February 1: Nana the Wonder Sitter declares we are in for a long weekend as Finn is not feeling well and is being very clingy

Saturday, February 2: After being up a lot over night with Finn, we decided our baby was sick.  He was laboring to breathe a little bit, and we didn’t want it to get worse or let it go any longer, so we were off to our favorite local urgent care – and our favorite PA was on duty!  RSV, flu and strep swabs all came back negative; after examination it was determined that he had a virus, perhaps an upper respiratory infection (Bronchiolitis?) and to watch for it to get worse.  No meds, no specific follow up required.  He did puke and cause Britt to miss Jake’s basketball game, but we had no idea what we were really up against!

Sunday, February 3:  Another long, tiring, stressful night had passed.  We had been giving breathing treatments at home every 4 hours for a solid day now.   Early in the morning, we decided we needed more treatment.  After having a bad experience at our local ER earlier in the fall with one of the Big Dream Weavers, we chose to head to Oklahoma City for help for our baby.  By 11:00am we were in the Mercy ER – chosen simply because he was born there and they already had records for him.  We spent about 4 hours there with x-rays, tests (flu and RSV again negative), and had 2 breathing treatments , IV fluids, oral steroids and antibiotics.  We were told the diagnosis was dehydration and pneumonia and to follow up with our pediatrician ASAP.  The middle left lung was the worst spot for the infection.  We left there with prescriptions for oral steroids, oral antibiotics, and to continue the breathing treatments every 4 hours, or as often as 2 hours if needed.

Monday, February 4: After a slightly better night, we were on the phone by 8:00 am to schedule an appointment with our pediatrician.  At our 11:15am appointment, she examined him and agreed with the Mercy ER diagnosis.  Told us to use the prescribed meds, keep up the breathing treatments, and to call if it got worse. He wasn’t eating or drinking very well, but he took his meds like a champ!  But, then he puked all over dad again!

Tuesday, February 5: Overnight was one of the worst we have ever experienced since he was tiny and on monitors and oxygen.  By 5:00 am Finn was in distress, and so was dad.  We needed HELP for our baby!  After much debate and discussion, we decided to go to our local ER as our other kids still needed to go to school that day, and we already had a diagnosis just needed more help.  Finn and Britt went on in while I waited for back up for the big kids at the house.  They put Finn on “flow by” (where he doesn’t actually wear the mask, just blows it into his face/nose) oxygen support in the ER as his O2 saturation levels were in the high 70’s.  They also repeated the RSV swab (which had to be done twice since the tech doing it DROPPED the first one!) – Still negative.  A portable chest x-ray was taken as well.  Started an IV with minimal complications, but they were unable to do the required blood draws – from 2 different sites.  So, 2 nurses (one with NO compassion that really ticked Britt off!) and then 3 different lab technicians came in and made their attempts.  I think he ended up with about 8 sticks!  Within 2 hours, they had called our pediatrician and we had been admitted.  We were in our hospital room by 9:30am.

We had seen our pediatrician right before we were moved to our room.  She said they would continue with monitoring and breathing treatments and we settled in for the day.  About 7:30pm, Britt came back to the hospital after going to basketball practice with Jake.  When he arrived, the room was a bit chaotic.  I was holding Finn in the recliner, trying to keep the flow-by oxygen going, because his O2 levels were dipping pretty badly.  They had turned up the flow of the oxygen to about 5 Liters (it had been on 1 or 2 most of the day), but Finn was being very resistant and not interested at all in sitting still.  When Britt got there, the Respiratory Therapist (RT) was in the room with us, and I immediately handed Finn to Britt and asked him to help.  Over the next few minutes, the RT continued to turn the flow of oxygen up - clear up to 15! – And it was blowing in Finn’s face like a blow drier!  He was NOT tolerating it AT ALL!  And we as parents were miserable with the situation.  We asked what else we could do, and the RT suggested nasal cannula.  They had attempted that in the ER, but were unsuccessful – babies don’t like the cannula!  So, after one much harried attempt, the RT threw the cannula on the bed, threw is hands up in frustration, and told my husband “My hands are tied!  There is nothing else I can do!” This did not set well with Britt.  As “politely” as possible Britt told the RT to get out.  We were told they would call our pediatrician, to which we said,”YES! PLEASE!”  She was there within 30 minutes, and after several emotional conversations (Special Thanks to my Sister-in-law for helping me hold it together), by 8:30pm we had made the decision to call for a transfer.  He was not responding as we expected, and we needed more help.

We chose the Children’s Hospital at OU Medical Center because we KNEW they would know how to treat a baby – especially one born at 26 weeks with who had chronic lung disease and probable pneumonia.  It took a couple of hours to get it all arranged and taken care of, but we were in the ambulance by 10:40pm and in our room in Oklahoma City by Midnight.  I rode in the ambulance with Finn while Britt followed in our van.  

Wednesday, February 6- Children’s Hospital.  Upon arrival, they had a nasal cannula on the baby with a flow of 2L oxygen, had run an RSV swab, IV fluids continued, had us settled in to the room, and an orientation to the hospital and the floor within 30 minutes.  AWESOME!  There was nothing else to do immediately since he had antibiotics in Stillwater.  He had breathing treatments every 4 hours, and a chest X-ray the next morning.  When the Doctor came by to examine Finn and fill us in, we were told the RSV test was positive, he has a collapsed spot on his left lung, and he had POSSIBLE pneumonia.  Only “possible” as they couldn’t tell since his lungs are so diseased.  They would continue with oxygen support, breathing treatments, and do a follow up x-ray in 2 days to evaluate the pneumonia.  They also continued with antibiotics in case he did have the pneumonia infection.  By this point Finn was miserably sick – hacking and coughing and constantly struggling to breathe.  We knew we were in for a haul, but we didn’t know how long.  (Side bar story – Britt went back to Stillwater to get clothes and kiss the kids.  When he got tour house, the power was off. Upon further investigations, it was discovered that the City had turn off our power at 2701 by accident – they were supposed to turn it off at 1701!  OOPS!  At least they got it back on quickly!)

Thursday, February 7- Children’s Hospital.  The first of many long days at Finn’s bedside.  The goal for the day was to wean his oxygen support, and to get Finn back to eating and drinking to get off the IV fluids.  The previous overnight was not good AT ALL!  He had a terrible time keeping his O2 Sats up!  His little body was just exhausted.  We had the flow back up to 3L at one point in the small hours of the morning.  We had called on all our prayer warriors and declared that Finn would overcome this obstacle! It worked!  He had a GREAT breakfast, played with his toys, got the flow back down to 1L, and had a great morning nap!  He was also on ½ the amount of IV fluid that we had started out on.  We felt this was GREAT progress, even thought we were back up to 1L flow when he was sleeping.  He drank a while sippy cup of milk and ate his first few bites of food in days!  GREAT progress – and we were told we would be there one, possibly 2 more nights.

Friday, February 8 – Children’s Hospital. Another day of monitoring and pushing Finn to get better.    Overnight was better, but he still struggled from 3am-5am.  We were on .5L when the day started on Friday, and we were completely off the IV fluids.  YAY!  He was still getting breathing treatments as needed, but they were fewer and further between.  They were now doing CPT – where they bang on his chest for several minutes on the front and back with a special instrument.  They do that every 4 hours throughout the day and night.  That afternoon, one of our doctors told us OPTIMISTICALLY we would go home Sunday.  This was a little disappointing, but we want Finn to be FULLY recovered before we take him home. Chest x-ray this morning – the doctor reported that he could not sure out the pneumonia so we would finish out the course of antibiotics.   Friday evening, Britt and I went to the Thunder NBA game with our family while Nana came to hang out with Finn. He was DEFINITELY feeling better today – even if the x-rays and numbers weren’t showing it.  He had turned his crib into a jungle gym and was all over the place!

 

Saturday, February 9 – Children’s Hospital.  Had a GREAT over night!  Britt slept all night, and Finn and I only woke up when nurses or RT came in.  He ripped the cannula off his face this morning, and it took Britt, me and 2 nurses to get it back on – he is feeling MUCH better!  His chest is sounding clearer every time they check, and we were told we might get to try a room air check this afternoon.  His O2 flow hovered between .5 and .25 all day.  Since he is doing better, it was a quiet day with fewer people in and out.  Makes for a LONG day.  I did, however, get to be christened with Finn puke.  And Britt had taken all my laundry home to wash it, so I had no pants to change into.  Thanks to some dear friends for running to Wal-Mart for reinforcements!  YAY for sweat pants!  We were hopeful this would be our last night!

Sunday, February 10 – Children’s Hospital.  EXCELLENT overnight!  Finn slept right through all his overnight assessments and treatments!  We tried a room air test, but his O2 sats dropped quickly, so he failed.  That means we will be here Sunday night as well.  The only remaining goal is to get off the oxygen!   I was pretty disappointed in this news, so I went home to Stillwater to see my momma and to love on my kids.  I needed the break.  Today, Finn’s O2 flow was at .12 most of the day – up to .25 for treatments and one nap.  SO CLOSE!  He is holding on to that oxygen by a skinny little thread!  One more night???

This has become our theme song over the past week.  Take a listen - it has a powerful message!

Stay tuned!  I’m sure you will hear it all over Oklahoma as I scream and shout when they tell me we can go home!!!