So things have once again grown quiet on the blog these past couple of weeks. I have a different sort of post today- I know I don’t usually go into personal stuff much, but I want to share this. There was very little information out there in the media about RSV or bronchiolitis, at least compared to stuff like measles, endovirus, ebola or even whooping cough… which you hear about almost daily. We only found out after that it is very contagious, very common, and very nasty. I hope with this post I can raise a little awareness by sharing our experience!
Firstly: the medical information is this post is provided as an opinion and personal account, and is not to be used or relied on for any diagnostic or treatment purposes. I am not a medical professional, and the information in this post should not be used as a substitute for professional advice, diagnosis, or treatment. ALWAYS contact your health care provider for any and all healthcare questions and/or decisions.
According to the CDC:
Respiratory syncytial virus, or RSV, is a respiratory virus that infects the lungs and breathing passages. Healthy people usually experience mild, cold-like symptoms and recover in a week or two. But RSV can be serious, especially for infants and older adults. In fact, RSV is the most common cause of bronchiolitis (inflammation of the small airways in the lung) and pneumonia in children younger than 1 year of age in the United States.
[RSV] is the most common cause of lower respiratory tract infections among young children in the United States and worldwide. Most infants are infected before 1 year of age, and virtually everyone gets an RSV infection by 2 years of age.
Each year, on average, in the United States, RSV leads to—
- 57,527 hospitalizations among children younger than 5 years old
- 100,000 to 126,000 hospitalizations among children younger than 1 year old
- 2.1 million outpatient visits among children younger than 5 years old
In the United States and other areas with similar climates, RSV infections occur primarily during fall, winter, and spring
Two weeks ago now Cooper (4 years) had a little cold, which he then passed to Lyla (11 weeks). A couple of days into it, her “little cold” morphed into a full-blown, hospital-worthy case of respiratory distress. Her official diagnosis was RSV/Bronchiolitis, and dehydration (her congestion made it difficult for her to nurse) but there was also a double ear infection thrown in there, which lead to a high fever.
Here’s the progression of the illness in her case:
Tuesday (DAY 1): Occasional cough, mild congestion, occasional sneeze. We weren’t even completely sure if she had a cold.
Wednesday (Day 2): Occasional cough, mild congestion progressing into frequent cough and congestion by evening. Little sleep. We began using infant saline spray and suctioning with a bulb syringe.
Thursday (Day 3): Constant cough/congestion which led to choking noise. We added the cool mist humidifier. In the middle of the night (1am Friday) she began choking frequently, which led us to bring her to the ER. They did an RSV test which came back positive. They sent us home and warned us what to look out for (labored breathing, blue around mouth and nose).
Friday (Day 4): Status quo throughout the day, with increased difficulty eating due to congestion. She was very “out of it”, her eyes were unfocused and she didn’t even really fuss. By night, her breathing had become more labored, so we headed to the ER again. They determined that she was dehydrated and would have to be admitted because of her lower than average oxygen saturation levels. She was also running a fever, which they gave her tylenol to bring down. They attempted to put an IV in her tiny hands and feet, but after trying all four plus the inside of her elbow, determined her veins were too small and it would have to go in her head. We were up almost all night, and she seemed to finally fall asleep by morning with me sitting up in the hospital bed holding her upright.
Saturday (Day 5): There was a shift change, and the new nurse came in and turned on the light. While in the dark Lyla had just looked like a sleeping baby, in the light it was immediately obvious that something was not right.* She was extremely pale and blue. The doctor and nurses came rushing in and she was immediately given a nasal cannula for supplemental oxygen. The doctor explained that she had suffered an apneic episode with bradycardia.** In other words, she wasn’t breathing enough and her heart rate was much too fast.
*In the ER they had been monitoring her oxygen levels constantly. Inexplicably, once we were admitted, the night nurse didn’t feel like she needed monitoring, and I didn’t know enough to ask for it (and I was also a zombie after 48+ hours with no sleep, had I been myself I probably would have questioned it more). In retrospect, I would have asked for monitoring throughout that night into the morning. It didn’t really change anything, because we were lucky to catch it quick, but at least the alarms would have been there if it had happened any earlier.
**Only approximately 5% of infants with RSV experience apnea. Source
Once she was given the supplemental oxygen, she improved beyond expectations, and was nursing again by 3pm (I had been pumping since we got to the hospital to keep my milk supply up since she wasn’t strong enough to eat.). They began to wean her off of oxygen. She continued to run a fever, so they continued giving her Tylenol at safe intervals. Mack and I took turns sitting up with her through the night in order to keep her upright (which led to less coughing/choking fits). We also began saline nebulizer treatments, which loosened up her cough and enabled her to more easily cough up the dried mucous in her bronchioles.
Sunday (Day 6): They took her off of the oxygen, but she still needed the IV and tylenol for her fever*, which spiked at one point during that day. Her coughing episodes continued, so they began suctioning treatments along with the nebulizer. This combination seemed to bring her longer periods of relief, and by evening she was back to herself a little bit, her eyes focusing more (even though she looked very sad and grumpy, which we definitely couldn’t blame her for). Her oxygen level remained very stable without help.
*We would find out later that she likely developed a double ear infection at this point, or possibly even an earlier point. We can’t recall them checking her ears after the first day, and we were too focused on her breathing to even think about it. However, it could have been the cause of the high fever she was running, and would explain why tylenol seemed to bring her such relief. It also could have been perpetuating her symptoms. If they had caught the ear infection, they may have brought down her fever earlier with antibiotics, and we wouldn’t necessarily have had to stay as long.
Sunday night was another night of “shifts” with Mack and I taking turns sitting up with her.
Monday (Day 7): Even though it was apparent that the treatment plan was working, and she had longer periods of being “herself” and she was maintaining her oxygen still, she continued to run a fever and had occasional coughing fits. The IV in her head “went bad” so they quickly moved it to her arm. A couple of hours later they finished weaning her off of it, and it wasn’t hooked up anyway. The doctor came in and explained our options for staying another night, which he recommended because of her continuing fever.
And another night of “shifts” with Mack and I taking turns sitting up with her. In the early morning she had a particularly bad coughing fit, so I called the nurse, who paged for the nebulizer/suctioning. We were then given the full treatment, and by holding Lyla facedown on her arm and patting her back, she was able to get out a giant “plug” of mucous from Lyla’s tiny lungs. She didn’t have another bad coughing fit after that to this day.
Tuesday (Day 8): We were sent home! Once we were back home Lyla smiled for the first time in almost a week, and coughing fits were few and far between. We attempted to recreate the nebulizer/suctioning with our cool mist humidifier and saline spray and the bulb syringe- but it didn’t work as well. She had a couple mild coughing/choking fits and resumed her fever, which we treated with tylenol.
Wednesday (Day 9): We had a follow up with her pediatrician. She discovered a “significant” double ear infection, and prescribed an antibiotic. She also gave us a tiny Lyla-sized saline nebulizer, which had an identical set up to the one at the hospital. We learned we could have called and picked it up on our way home from the hospital. We had tried to find one on Amazon, but they are available through the doctor and billed to insurance. Good to know!
This was pretty much the final day of active symptoms. We were able to keep the fever at bay with tylenol until the antibiotic wiped it out about 12 hours later (she hasn’t run one since). We used the nebulizer during a couple of nighttime coughing fits, but we were mostly through the worst by that point.
By Thursday she was at 95% of her regular self, and 99% by Saturday. Now, a week later, she is a tiny bit raspy when she wakes up, but it clears quickly. Other than that, she’s back to her cooing, smiling, kicking little self.
My personal takeaways from this illness are as follows:
- When in doubt, I will just go to the ER with my children. We were on the fence- we had already been told there was little they could do for RSV at our first ER visit, but she seemed to be getting worse at home. Her breathing was very labored, but it had been the previous night and they just sent us home. But we went to the ER again anyway, and it WAS worsening (apparently), so she was admitted. As a result we were able to get her on an IV and have a team of doctors and nurses right there when she had her (terrifying) episode of apnea the next day. I can’t imagine how I would have felt having to call an ambulance and make arrangements for my other kids in a emergency.
- Monitoring. The monitor was my constant reassurance and the only reason I was finally able to get what passed for sleep. And like I mentioned before- I would have definitely advocated to have her on the monitor the first night if I’d had more information (which I deduced her not being monitored was a goof up on the part of the first nurse. The next nurse and doctor exchanged a look when during the apneic episode they realized she wasn’t on a monitor.) I loved being able to see that her oxygen level was improving. Our favorite nurse summed it up- at the end I was being weaned off of the monitor, not Lyla.
- Ear infections. My two boys never once have had an ear infection or have needed antibiotics. Now I know to ask them to check Lyla’s ears when she’s running a fever like she was.
- The Nebulizer. Thank God we have our own now. It helped Logan at 18 months when he had croup, and it certainly helped Lyla. According to her pediatrician, we can add medication to it as well, if needed. It can bring at-home relief even during the common cold for any of our kids. I feel better now that we have it.
- Hand washing/ Sanitizing, possible quarantine. I actually had bacterial pneumonia a couple of weeks after Lyla was born, which was scary enough- but I managed to keep her from getting it with a disposable mask/frequent hand washing. I try to be diligent, but Cooper is one of those children who licks conveyer belts in the grocery store and touches everything. Unfortunately, he also constantly feels the need to touch Lyla’s face, and while I tried my hardest to keep them apart and his hands washed when he got his cold, he is not the greatest listener… next time= quarantine.
Although Lyla is perfectly healthy now, I can’t seem to let her out of my sight. It seems crazy that my tiny baby got so incredibly sick- but at the same time we are so lucky that she got better so quickly. It already seems surreal. I had two full blown panic attacks- one when they put the IV in her little head and one in the aftermath of her apnea. I was also running on little to no sleep, so it’s all a bit blurry.
But now it’s over, we’ve been home for a week now, and I’m happy to report that Lyla is back to 100%, just in time to turn 3 months old! :) The daffodils are poking through, the snow has stopped (FINALLY!) and is almost melted, I’ve opened the windows to get rid of the stale air, and we have resumed our evening family walks. It’s SPRING, folks! We’re going to be okay!
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