Friday, January 5, 2018

Our week with RSV

Just last week, everyone in the house came down with colds landing us a trip to the Children's hospital on New Years Eve.  I can't tell you how many prayers I said throughout the week that it wasn't anything more serious than just a winter cold.  RSV and the flu is already going around and after our experience with RSV last year, that is not something I ever want to go through again.  I know it may seem a little odd that I am sharing all of this and especially these pictures, but I wanted to bring awareness to this illness that I had no idea of before we got it.  Here is our story.  

Last year was the year of sickness in our house.  Someone would catch a cold, pass it around to everyone else and eventually it started to seem like we just couldn't catch a break.  Callie was by for the worst in terms of colds running through our house.  She wasn't even a month old and came down with the dreaded RSV.  RSV is a respiratory virus that is much like a common cold, causing similar symptoms.  Sometimes RSV can lead to pneumonia in more serious cases but in most cases you can treat symptoms from home.  Infants are a different story.  Because RSV is a respiratory virus, it effects their breathing and some infants may need to be put on oxygen for respiratory support.  RSV causes a very distinct breathing where you can see the stomach retracting a little more rapidly or sucking in underneath the rib cage.  You can find a lot of videos on You Tube that show this but here is an excellent one. 

Loyal came down with it first.  He had a fever one day and wasn't acting like his usual self, playing and running around.  I'll never forget that day as I was making him lunch and realized that he had fallen asleep on the floor.  This was so NOT LIKE HIM!  I didn't think much of it in the moment because I knew he wasn't feeling well but once he woke up, I knew he was really sick.  It appeared to be just a bad cold but with a really really bad cough.  By the time I decided to take him to the doctor, him and Roman were in the back seat taking turns coughing into a bucket because they were both coughing so hard that they made themselves sick.  The doctor's visit left us without many answers other than negative for flu and strep.  That night was rough.  His fever never came down and by 9pm it was up to 104 even after medicine.  We decided pretty quickly that a trip to the Children's Hospital was necessary so him and I packed up and headed down.  (Side note: why do my kids only have scary high fevers after the doctors office is closed??!)  At Children's, they got his fever to come down and did X-rays of his chest to rule out pneumonia and again, we left without any answers.  We followed up with the pediatrician the next day hoping to finally figure out what was wrong with him because I knew that there was something more there.  They put him on oxygen and decided to test him for RSV, which was positive.  They broke it down for me like this:  1. We finally had an answer 2. It's a virus so there isn't much that you can do for it other than treat symptoms 3. Lastly, RSV is highly contagious and very dangerous for infants.  Honestly, the only reason they decided to test for RSV was because I had a baby.  This is the reason I am sharing all of this.  We went through so much before they finally tested him for RSV.  Get familiar with the symptoms and ask upfront.  Looking back, I wish I had asked them to test him on our first visit.

Leaving the doctor that day, I felt a sense of relief knowing what Loyal had and that it would hopefully be over soon.  I was also extremely worried about Callie catching it.  I did the very best that I could trying to keep everyone separate, changing my shirt in between caring for Loyal and having to nurse Callie.  But as I somewhat expected, Callie started showing symptoms of getting sick the very next day.  I knew exactly what to look for this time.  She was sleepy, falling asleep while nursing, looking and acting like she had a cold, and then the coughing started.  She seemed to be hanging on pretty well at first but I eventually realized that she consistently wasn't nursing as well to the point that I could tell she had lost a little weight.  I was very aware of her wellbeing and the second I noticed her stomach and chest expanding as she was breathing (example of that here), I knew it was time to go.  We went to the pediatrician right away.  From the time that I left our house to the time that we arrived at the doctor, she just tanked.  They checked her oxygen, which was low, and got her on oxygen to help keep her levels up to where they should be.  Doctors and nurses were coming in and out of the room checking and rechecking her oxygen levels.  They kept dipping down to a scary low level.  Everything that happened next happened so fast and unexpectedly.  They told me that we needed to go down to Children's and the doctor said to me "and I want to send you by ambulance."  Those words I will never forget and I am tearing up as I sit here and write this.  In that moment, I just broke down.  I was exhausted from a week of sick kids and now I am having to send my tiny baby to the hospital by ambulance.  The doctor reassured me that going by ambulance was only to be able to keep her on oxygen and an easier ride for me with emotions and nerves running high.  The nurse who had gone to call for an ambulance popped her head back in the room to relay that the wait times were very high in which the doctor responded with, "call 911."  I knew that this was just standard procedure but nevertheless, definitely words you never want to hear.  

Loyal got to the pediatrician minutes before the paramedics came down the hallway with a stretcher.  I remember feeling like this seemed so dramatic for an infant in a carseat but I guess that's how they do it.  The paramedics were all very kind and comforting, reassuring us that everything would be ok.  One of them told us how his son had RSV at about the same age and they got through it just like we would.  Loyal and I came up with a quick plan that I would ride with Callie and he would follow with the boys.  It was a rainy afternoon and probably the most depressing grey skies that you could ever look at through the back of an ambulance window.  We rode in silence as the paramedic entered information in the computer and Callie slept.   I felt like all emotion and energy slipped from my body on that ride and something else took over me to get me through the motions.   We got to Children's hospital and they got her hooked up on their oxygen and started running all the tests.  She tested positive for RSV, bornchiolitis, and Coronavirus.  She was admitted so that she could battle these in their care.  

Loyal decided to go ahead and take the boys home.  Our family is so strong together but I knew that we had no to choice but to divide and conquer.  That was a tough goodbye for all of us.  After they left, the nurses at Children's discovered that Callie had a fever.  Being that she was under 4 weeks, we had to follow the standard procedure of a spinal tap.  This is one of those things that they warn you about a million times but you still think it will never happen to you.  The doctor who would be doing it came in to go over the procedure with me.  He was very reassuring with impressive statistics in accuracy with spinal taps and overall left me feeling as comfortable with this as he possibly could.  They said it would take about 30 minutes and to get something to eat in the meantime.  So that's what I did.  I took a walk, called to check on the boys, forced myself to eat, and anything else I could do to keep myself busy.  I decided to head back to my room early and passed the nurse on my way.  She said that the spinal was done and I could go and see her now.  Walking into that room and seeing your tiny baby lying there so helplessly will make your knees weak but I knew that the worst was behind us and from here we would just have to ride this out.

I met with the doctor and we went over the plan.  Callie would need to remain on high flow oxygen, which would put us in the PICU until we could gradually wean her down off of oxygen.  We would continue treating symptoms and although her spinal came back negative for meningitis, she would still need antibiotics for anything else that may not have shown up yet.  She also informed me that we would be here for about a week.  The nurses got her transferred and set up in her room and gosh, that was a difficult thing to see.  Just walking through the PICU was so many small children in rooms with glass walls is absolutely heart wrenching.  Callie was so tiny in her crib with a million tubes and wires and machines and sounds and beeping, all so overwhelming.  I don't remember much from the first 2 days.  I had nothing with me and I think I just sat there beside the bed watching over Callie while she slept.

We were in the hospital for a total of 5 days.  Her progress and recovery was very gradual at first, which was why we stayed so long.  They turned down her oxygen little by little until we could eventually switch to low flow oxygen and move to a normal room.  They fed her breastmilk by tube so I didn't physically nurse her for the first 2 days.  This was probably the hardest part of the experience for me.  I exclusively breastfed and without being able to do that, I felt helpless and striped of motherhood in a way.  It was the morning of day 3 that the doctor felt like she was looking and acting much better so she wanted me to try nursing her.  I cried!  It was one of the most emotional moments of my life and just feeling that immediate connection, I felt alive again.  Moving out of PICU was a huge millstone for us and we knew that we would be home soon after that.  When we moved, another 4 week old infant with RSV took our room in the PICU. The nurses all said that last year in particular was the worst they had ever seen for RSV.  The nurses and staff were amazing, helping me with anything I needed and keeping an eye on Callie when I needed to run downstairs and eat.  I missed the boys like CRAZY and the day that Loyal came and picked us up to go home was the best feeling in the world.

It's a really tough feeling to get used to the cold and sterile environment of ICU or any other hospital floor.  I know our stay was short and easy compared to others.  My heart truly goes out to those who face much bigger challenges, the nurses, doctors, and all staff who work so hard for the care and wellbeing of others.
This was when we first got to the ER.  You can see that her lips were dark which is an indication of not getting enough oxygen. 
Our room in the PICU
Day 2: Holding her for the first time in almost 24 hours
Day 3: Nursing again!
So many times we don't take our kids to the doctor for a virus because there isn't much to do.  Know what to look for, listen to your intuition when it tells you it's something more serious, ask for an RSV test, and if you see your child having retractions or straining to breath, take them to the ER straight away.  Better safe than sorry is best!

I know it's a year later but I just wanted to give another HUGE thank you to my family for all coming together to take care of the boys that week, bring me changes of clothes, our visitors and especially Andrea for loaning me her breast pump in a moments notice, lol. 
And her we are almost a year later!  Happy and healthy! (minus a double ear infection from last week) 

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