I’m not even really sure how to verbalize this all.
On December 12th Ethan was found seizing in his crib. After not showing response once his rescue meds were given, I called the ambulance and he was rushed to our local ER. They tried so hard to stabilize him, to get IV access to get him meds, as he continued to seize.
I remember my body going into full panic mode. Shaking, tingling, weak. I remember the nurse telling me I need to breathe better so I don’t pass out, because I’ll be useless that way. I remember the chaos, as they tried to stabilize his little body.
Do we need to intubate? Let’s get the bone drill ready. He’s still seizing. We can’t get IV access. He’s stable for now, let’s call PICU and transport.
And off he went, getting his third life-flight in just 17 months. I was able to go with him. The team assessed him and worked on him once we got to London. He seized again. More meds. Every dose of medication making him more sleepy. They told us if he needed one more loading dose they would need to intubate him to protect his airway. Thankfully he stabilized.
The thought was that he had outgrown his medication dosage which lowered his threshold, causing a prolonged seizure. Sleep off the extra meds, adjust his daily meds and go home.
It’s been a week. He should be pretty much back to his baseline by now, but we are dealing with high fevers and a very concerning neurological picture. Our sweet boy is not really waking up. We are getting some response, but he is either extremely agitated or sleeping. He is not tracking objects with his eyes, his pupil response is sluggish, his EEG is very slow which is a big concern.
For this to just be the meds no longer makes sense. His Lumbar Puncture shows no signs of Meningitis, which is good. While he have seen some slight improvements, it has been nowhere near enough.
I keep expecting him to suddenly wake up, sit up and flash his big smile, but that’s not happening right now and is very unlikely to.
Neurology is concerned. His team is concerned. We are concerned. Everyone is. Ethan will be getting an MRI tomorrow so we can see how his Brain looks. We are absolutely terrified. We want and need answers but also so desperately want those images to come back fine. That maybe these meds are lingering longer than expected.
This last week has been absolute chaos and it’s been terrifying. The unknown is SO scary.