Meningitis in your words

Kylian Ernesto Moya's story

  • Location: USA
  • Categories: Bacterial meningitis
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Recovery with after effects
  • After effects: Co-ordination problems, Epilepsy - Seizures (Fits), Other
Kylian Ernesto Moya
Kylian Ernesto Moya - Meningitis in your words

On Monday, November 13, my son that was only ten and a half months old at that time, was perfectly fine and seemed healthy and playful. The following day he continued to seem normal and perfectly fine. However, on the 15th, the Wednesday of that week, he seemed okay in the morning except for the fact that he wasn't eating as much as he usually does and I didn't think much of it except for that maybe he wasn't very hungry.

That Wednesday the 15th, I was at work and the babysitter texted me that the baby was running a fever and hadn't eaten much at all that day. I rushed to go pick him up and that whole night he spent it running a fever and not able to keep anything down. I thought maybe it was a stomach bug. His brother and I had just gone through one the week before. I called out of work the next day and stayed home with him and noticed that he still couldn't keep anything down and would vomit to the point where it was stomach bile coming out.

He started becoming lethargic and only wanted to sleep at all times and was not alert or happy at any point. Anytime I attempted to move him, pick him up, he would let out a heart wrenching cry and I knew something wasn't right. I rushed him to the ER (emergency room). They took vitals, a quick look at him, l expressed my concerns and all they did was a nasal swab test to run for the rapid flu, Covid and RSV (respiratory syncytial virus) test. Those rapid tests came back negative, but l was still uneasy, so they said they would send it for a respiratory panel and I agreed. The doctor then had me give him milk to see if he would tolerate it, and to no surprise, he vomited. Still, the doctor sent us home and said it's probably viral to just let it run its course and to give him Tylenol or Motrin for fever. He said, “you're just a worried mom.” Ouch. That really ticked me off, but I packed everything up and left. But I only left with the intention of waiting to see what the respiratory panel would come up with. They told me it would take up to 24 hours and I still had it in my mind to take him to another ER.

I went home and my son was the same, if not worse. A few hours went by. They called, they said he tested positive for rsv and rhinovirus, which could have been just common colds, and it was rsv season. l remembered that l had mentioned while at the hospital that he sounded like he had a bit of wheezing, but that they said he sounded fine. I started googling his symptoms, and not all of them added up to rsv or rhinovirus. Not to say he didn't have that, but in my heart, I felt something was wrong. Overnight, his condition seemed to worsen. Still very lethargic and wasn't able to keep anything down. He didn't want to eat or drink anything. And anytime I moved him or touched him or tried to pick him up, he would scream in agony. Something was telling me that I had to run and take him to the hospital. So I packed everything up the next day, early in the morning, and grabbed both of my sons and rushed to the ER.

I remember when I got there to the ER, I told the nurses and the doctor that I was worried something else was going on and that he needed more tests done, that their sister hospital didn't do more than a nasal swab, and that I wanted everything checked. Maybe he didn't have anything else, but at least I could make sure he wouldn't dehydrate, at least, and l'd get the doubt out of my mind. They started trying to get some tests. They even attempted to get a urine sample, clean catch with a catheter. But of course, to no surprise, they could not get even a drop of urine. They then sent to get an ultrasound of his bladder to see if there was anything in his bladder, and then his kidneys to make sure they looked good. And while that tech was performing the ultrasound, I was trying to comfort my son while he was crying and screaming in agony.

Out of nowhere, he just stopped crying. I was holding his little hand, and it just let go of mine. And I looked at his eyes, and they had a fixed stare looking up, and his body was stiff, and his chest didn't look like he was breathing. I remember trying to stimulate his chest while he was crying, while I was crying and saying: “what's wrong with him?”, "get a doctor". Of course, at first I freaked out because I thought my child was dying. But then he seemed to come to life and let out a quick cry. And then it happened again, and I realized he was having seizures. It was still just as scary. These seizures happened three times that I saw, and possibly another while I was outside of the room while they worked on him. I remember the doctor that was seeing him had mentioned that he definitely seemed uncomfortable and that his neck was rigid.

He suspected meningitis, and nonetheless, they said they were transferring him to the larger hospital location to get hospitalized. The ER I had taken him to was a small, almost like an urgent care. I watched as they rolled my baby away. I felt hopeless, impotent. I hurried and grabbed my oldest son and drove to the hospital they were taking him.

It was an awfully scary situation, but I would say to trust your gut when you feel something more is going on. Especially with the little ones that need us to be an advocate for them.

We waited there for hours while they got our room ready for him. They were monitoring his vitals and did an echocardiogram of his heart because something didn't sound right and his pulse was very elevated. They also suspected meningitis, but were trying to do other blood work to avoid a spinal tap on such a small child. Eventually, the results indicated a kind of bacterial infection, but that it would take time for the classification of the bacteria to show. The echocardiogram also showed that he had fluid around his heart.

Kylian Ernesto Moya in Hospital with Meningitis

They finally got him into room, and he seemed to worsen. They had him on oxygen, and his breathing was not normal. They had an EEG set up and hooked up to monitor for seizures. And then the next day, they said he had to go to the PICU, which is the pediatric ICU, where he had basically care around the clock. I was googling everything, and the odds didn't look great. Finally, they decided it was best to do the spinal tap so they could get him the right plan of treatment. So they did the procedure, and shortly after, they confirmed it was a bacterial meningitis.

After some time, they were able to classify what type of bacterial meningitis it was, and it was haemophilus influenza. After a week in, the things started to look up. He didn't have fevers for two days, and he was able to drink a little bit of milk, maybe like two or three ounces. But then, out of nowhere, after those two days, the fever started again and the vomiting. Not being able to keep anything down, they performed another CT. There was still inflammation. Upon further testing, they confirmed that the meningitis had caused sepsis, and the infection led to his heart, and it caused a dilation in an artery in his heart and aneurysms. l felt like my world was basically crashing down. They said it was one of the worst cases of meningitis they had seen in a really long time. They said they had him on the right treatment he needed to be, that we had to be patient and wait and hope that the meds did their job. He was also put on aspirin to avoid the blood clotting within the dilation in his heart.

After a month in the hospital he finally came home. He is doing much better. However, he goes to physical therapy due to his legs not being as strong as before and has problems with his coordination and balance. He is having horrible sleep disturbances and possible silent seizures, but he still has to be seen by neurology. At his cardiology appointment they mentioned the possibility of him having to get a shunt placed in the dilated artery as well. Nonetheless, I am grateful my baby is home and alive and in my arms.

View Kylian's story on tiktok

Eileen Fragoso
February 2024

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