On December 26, 2018 Sawyer was sleeping in my arms when I noticed he was drooling.
I was super confused by it and a few seconds later his lip began twitching. I called my mom over and tried to get him to respond to me.
We had never seen a seizure like this and to be honest, I was confused.
I yelled at my husband to bring the rescue med, prepared and administered it. It didn’t work and after speaking to the doctor we were instructed to call 911.
On the ride to the hospital he continued to seize but the EMT was hesitant to administer a second rescue.
When we got to the hospital they laid him down and he crashed. He had been breathing too shallow for too long and they had to intubate.
It was one of the scariest moments of my life. He was surrounded by doctors and they had to cut off his shirt in order to care for him appropriately.
Thankfully, once he recovered a few hours later, he was pulling on his tube and they extubated.
The reason I am sharing this story is because when I voiced my concerns about the type of seizure and how hard it was to detect, the doctor actually told me there was no way of preventing it from happening at night.
I explained that if I wasn’t holding him he would have died because this seizure didn’t stop without multiple rescue meds.
Again, he told me there was no way to detect or prevent it. I was FLOORED. Thankfully the nurses asked me several times what I could do and said they wouldn’t release me until I was comfortable.
The nurses told me to contact his complex care doctor and get oxygen and a pulse ox delivered to our home immediately.
That way the pulse ox could detect it and I could administer oxygen until the EMTs arrived.
On October 13 last year, his pulse ox caught his seizure. I was able to go in, administer meds and call 911.
They gave a second med in the ambulance and we were rushed to the hospital.
He was not intubated, he was only observed for 24 hours. Our neurology team helped diagnose him with prolonged and aggressive seizures, increased meds as well as gave us a new seizure action plan.
We now give rescue meds immediately and call 911. Had I not advocated, he wouldn’t be here today.
It is EXTREMELY important parents advocate and it’s equally important that doctors offer SOMETHING to ease the mind of parents.
I am so thankful for our AMAZING neurologist who not only caught his infantile spasms but was also the one to talk to us about SUDEP (Sudden Unexpected Death by Epilepsy) so I knew the questions to ask when he had his “new“ seizure.
As a parent advocating can be extremely hard. You feel as though you aren’t the medical expert, you aren’t qualified enough to make these decisions.
I know exactly how that feels but always remember that YOU are the expert on your child.
You know how their body works, you know how they react and YOU are the expert.
Advocate. Advocate. Advocate.