My child is home, but my child is different…
On Wednesday, August 29th my 7-year-old son Joshua Gay, who is a second grader at Amherst Elementary in Jackson Township, woke up with a headache. He did not have a fever, so I gave him Tylenol and he wanted to go to school. He rode the bus home to his dad’s house that afternoon and I randomly decided to stop and see how the day went for my boys. I also have a 10-year-old son Ryan who was playing outside when I arrived.
I found Josh laying on the couch. My ex-husband, Brandon, was on the phone working. I checked on Josh and he was running a fever. I went ahead and gave him some Motrin and headed out as I had to work that night. I am an emergency room nurse at Aultman Hospital. Brandon updated me in the morning around 6:00 a.m. and said his fever returned and was 102, so he gave him Motrin. I picked him up on my way home from work because he was not going to school. We slept on the couch until about 12:30p. When I woke up and checked his temp he was 104.2. Still only complaining of a headache.
I gave him both Tylenol and Motrin together. His fever broke, and he had a great day playing and doing his normal 7-year-old things. Later that evening his fever returned and jumped back to around 102 again. I gave him a dose of Motrin. When I rechecked his temperature, my thermometer read 106.2 (in my head, no way this is accurate, but he is hot). When I returned with the Tylenol and some juice I found my son on his side facing the wall. He was having a focal seizure. His lips were blue. He came out of the seizure and vomited everywhere. My husband called 911 and we rushed him to the hospital. I am an ER nurse, so I’ve seen this before and while worried for my son, I wasn’t panicking. I was in denial as to just how sick he was.
Once at Aultman Hospital they did several tests and arranged for admission to Akron Children’s Hospital. He was intubated and then while in the Mobile Unit, he took a turn for the worse and went into respiratory failure. They intubated him, and my world fell apart at that moment. I thought, ‘this isn’t just a seizure or fever. This is really bad.”
Once a Children’s they told us it is Encephalitis season. What is encephalitis season???? I have never heard of this being a thing, but this is what they do so it will be okay…
The morning of August 31st his MRI indeed showed he had encephalitis. The cause was unknown, but they had sent out the fluid from his lumbar puncture to hopefully determine the cause. Sept. 1st he was extubated and awake and talking. Yeah! He was transferred out of the PICU that evening.
We will be out of here in a few days. The worst is over, or so I thought.
Then the next night, his behavior changed, and his fever was uncontrollable once again. He went into respiratory failure for the second time and was sent back to the PICU and was reintubated. It was several hours of bad and so many thoughts and fears went through my head.
Early that morning on Labor Day (had no idea it was a holiday at this point) a neurosurgeon came in and told us they needed to take him to the OR to place an intracranial pressure monitoring device (ICP Bolt) to monitor the pressure in his brain and explained all the things this could lead to depending on the pressure.
This is the stuff you see on TV…Not in real life let alone happen to your own child. The infectious disease doctor requested a second lumbar puncture. Praise and thank goodness, because this showed his pressure was high but removing the fluid for testing, brought him back to a normal pressure for the time being. His high fevers were causing the increase, so they decided to cool him to prevent this. The next 48 hours were critical. He was extubated the morning of the 6th. His fevers slowly were subsiding. The morning of the 8th I think; it came back that he had LaCrosse Encephalitis an arbovirus caused by a mosquito.
A mosquito almost killed our child.
I can now tell you just about anything you ever want to know about mosquitoes now.
- The incubation period is 5-15 days from the time you are bitten.
- Most people just develop a fever and nothing more.
- Infectious disease said that 1 in 300 get as sick as Josh did.
- CDC reports show that OHIO is the number one state with the most cases of an average of 20 per year.
- This is caused by a tree hole mosquito. They bite during the day and live in and near wooded areas.
- Prevention is all you can do for this virus. Spraying with DEET is the most effective way to prevent getting this virus.
Neurobehavioral and cognitive deficits are the biggest side effects he is at risk for. He also has an increased risk of seizures now. He is currently in physical therapy for weakness and balance issues. He will begin occupational therapy soon. So far, no seizures thankfully.
His behavior comes and goes, and he becomes irritated or frustrated. Hoping with time this resolves as well. He survived and that is all I wanted. All the side effects can be managed. Joshua is upset about the scar in the front of his head. And is frustrated about his balance and weakness. Noise hurts his head (Velcro) and light bothers his eyes now.
My child is home, but my child is different. He looks normal and isn’t in a hospital anymore, so he is presumed all better. This isn’t the case. I am broken hearted and there is nothing I can do to fix this. He is easily agitated and angered which can last minutes or hours. Light and certain noises are upsetting to him. His behaviors are not always him. He tells me he is dumb and is afraid of dying. My sweet child is there but gets sidetracked by a brain injury that takes over. This is devastating to watch, and I cannot even begin to imagine how he feels.
While the severity of his illness is not common, he isn’t the only child with this diagnosis.
This is a parent’s worst nightmare.
If by sharing our story we can prevent another child and family from going through this then it was worth it.
- Spray your yard and your children.
- Wear shoes and dress appropriately.
- Prevention is all you can do. I love essential oils as much as the next person, but this isn’t the time for them.