Life of a family with special needs kiddos has its highs and lows. We had the scariest thing happen to date with Jameson…
The day (May 31, 2023) started with unease for me, I could not explain it, but I just pushed it to be a need to clean, and that was what I did. I organized things that I had been putting off and dusted my bedroom, laundry, and a bunch of other little projects that I had been pushing off. I even told Jon that I just have this urge to clean and feel off. Being the hottest day in our area for the year to date, 90 degrees. We made plans to go over by Grandma and Grandpa for the boys to swim in their pool. Jameson was so excited he just wanted to go into the pool that Papa just opened.
We packed up what we needed to swim, loaded in the truck, and drove to their house. All the boys were excited to go swimming, Jameson especially as he was not afraid this year to jump into the pool or swim without being near another person.
They get in the pool and begin swimming around and having fun. Jon was watching them from the side on the deck. Me sitting on the patio.
After about 30-35 minutes in the pool, Jameson yells for Daddy and says he needs to get out. Mind you, for about 15 minutes prior. We were scolding Luna for wanting to jump into the pool (we thought she was just excited with all the kids being in the pool and wanted to be in there with them). The reality was something different.
With older brothers’ help, Jameson gets to Daddy. Just reaching the top of the steps on the deck, Jameson falls into a grand mal seizure. His first! All of his seizures before this were just partial seizures. For 3 to 4 agonizing minutes (praying it was not longer), we watched as our baby seized, even foaming at his mouth and having blood coming out. The blood we learned was from him biting his tongue.
I screamed to my mom, sister, and Joey to call 911, but the phones would not connect. Finally, Joey and my mom got through to tell the dispatcher we needed an ambulance.
Jon carried Jameson to the driveway from the backyard to wait for the ambulance. It seemed like forever, the wait was horrible.
Jon, my sister, and I watched him closely, trying to figure out if he was ok. He was so out of it. Tired and confused. Still shaking but even more confused. When the ambulance finally arrived at my parents, we explained his medical history. We explained that this was his first grand mal seizure, and we were very concerned, especially with his history.
The paramedics encouraged us to take him to Children’s Hospital of Wisconsin to ensure he was alright. The whole ambulance ride, Jameson cried in confusion and fear. My heart broke as I had not seen Jameson act the way he was before, not even after anesthesia or his partial seizures. (Side note: the bear he is holding was a gift from the paramedics to try and provide Jameson comfort.)
Arriving at the hospital, he was still confused and in fear. Nothing I said helped him; my heart hurt for my child. I didn’t know what I could do. The state he was in, nothing would comfort him.
They took us to a room and started going through their battery of questions, having me explain what we saw, how long the seizure lasted, and what he was doing while he was seizing.
My mind was racing 1000 miles a minute, and not with good things. I kept praying that everything was alright and that Jameson would return to his baseline.
The doctors evaluated him and found he was presenting in what they felt was “getting back to normal.” She did several neurological checks on him. Then reassured us that, for now, he was alright and that they would call and talk to the neurology team to see if they wanted to run more tests or add medications.
After about an hour and a half, another doctor said they would be sending us home and that Jameson’s neurologist would call us tomorrow to discuss adding a new medication. To watch over Jameson.
My mind was still racing. I tried to ask as many questions as my brain would form, like why would this have happened? What should we do to prevent another from happening?
The answers we were given were it could have been the heat that an average person’s body’s seizure tolerance lowers when the body is stressed. Heat will do that. Jameson’s body already has a low seizure tolerance, so the stress of the high heat may have pushed him into this seizure. They said it could also be lack of sleep (he slept well the past week, so I am not sure of that), it could be diet or absence of a balanced diet (possibility as we are struggling with Jameson and Children’s to get him the help for that). They said that it could be his body has outgrown the dosage of Lamictal (his current seizure medication) and that he needs a booster to help regulate the seizures.
So now Jon and I are in waiting. Waiting to hear about what next step to take. For the doctor to update and talk through what steps those are, and for God to provide direction as to whether those steps are the right.
We ask that you pray for Jameson. That his seizures are not getting worse (though it seems they are), that he gets to experience his childhood as much as other kids (since we have to be so cautious with every choice we make), that God helps hold and provide comfort to Jon and I and the rest of the boys. It was such a scary experience to see Jameson’s seizure.
Our older two have said a few things about how they feel, but I am sure it is not entirely the extent of what they truly are feeling.
More updates to come, stay tuned.