It was a regular Sunday morning at the Catiis residence. The sun was out and the breeze is nice and cool. Everyone was abuzz and busy with their daily morning routine and ready to begin with what started off as a relatively relaxed day, until…
8am Isabella coughed and had a little throw up and then she had this frozen expression on her face right after. Her limbs were limp and not moving. It was a seizure… wait it out, wait it out…
I then put her on her side so she does not choke on her saliva or possible succeeding throw up. Her body did some minor jerking movements. She is still seizing, wait it out, wait it out…
Then her eyes rolled up and her body stiffened. Still seizing wait it out, wait it out…
I held her and kept talking to her until the seizure episode, well, ceases. My son was asking me to make him breakfast, but I cannot. He noticed the look on his sister’s face. I had to tell him and explain to him that his sister is having a seizure. I asked him to wait it out with me and then I can make him breakfast.
Minutes passed (that seemed like hours) but she was still seizing. I believe she will stop for a couple of seconds and another one comes along, looking different than the last one. I called my husband (who left for the store right before everything happened) and instructed him to come home right at that instant. My son was already starving… but I cannot leave Isabella. I told my son to hold his sister’s hand and that we pray together to make the seizures stop. We prayed and prayed over and over… she would not stop seizing. My son even said, “Nanay, I don’t think the prayers are working.” I told him it will. They’d better work.
Eventually my husband got home and I instructed him to take care of Eloi before attending to Isabella. When he became available, he took her from me and that’s when I started breaking down. He kept talking to her and was even playing with her, probably thinking that he can distract her from having the seizure, but they just kept on coming.
I told him that now would be a good time to call 911 and so we did. While I was on the line with the 911 dispatcher, she started shaking… the seizures became grand mal and she started turning purple. That’s when I lost it. I prayed loudly and started giving her away to God. I was telling Isabella that if God is calling her to come home, she has a permission to go with him. I assured her she can go and that we will all be ok.
The paramedics arrived, checked her vitals, then took her to the nearest hospital. My husband rode with them.
I was not in the best state to drive. Good thing that the neighbors were on their way to church and saw the ambulance. They drove me to the hospital. I called friends to let them know what was going on and everyone stepped in and took in roles on who will take care of our son and the house and other things.
When I got to the hospital she was still seizing. The doctors and nurses had a lot of questions. We had to let them in on her litany of complications. We had to explain her syndrome. They do not know her here. We told them that she was under the care of many doctors at Stanford, and then they started making phone calls.
They gave her 2 separate doses of Ativan but she was still seizing. She had on oxygen and almost needed to be intubated, but she, like the trooper that she is, somehow managed to breathe not needing the support of a machine. The attending doctor got a hold of our neurologist and was instructed to administer Diastat. After the longest 2.5 hours of our life, the seizures stopped.
The Stanford team was on their way to pick her up. I went home to pack a hospital bag and made arrangements for work the next day and for Eloi’s school the next day. I wanted to give him a sense of normalcy amidst all the chaos. I didn’t want him to learn about “worry”… no, not yet.
The Stanford team picked her up and ambulanced her all the way to Palo Alto. We were instructed to follow and reassured us that she is in good hands and that we do not need to hurry. My husband and I drove ourselves up there, stopping at a Mcdonald’s to get a quick breakfast and to recollect ourselves.
On the drive up to Palo Alto, I would burst into tears… this time Edgar joined me.
When we got to the hospital, we found her in the Pediatric Intensive Care Unit. A Neurologist was already there at bedside attending to her. Isabella was knocked out and she had a fever. We spoke to the doctors recollecting the events of that morning. We were trying to figure out what might have caused the seizure. We told them that the day before she was baptized and we had a party and she skipped her afternoon naps because she was interested with everyone. She didn’t get to really fall asleep until 11 that night, and from 1 am onwards would cry and fuss every hour. The seizure trigger could have been that she was over stimulated from the day before, tired from the day before or she could have caught something and have an infection that may have caused the seizure, hence the fever, or she could just have a fever right after the seizure and the trigger is random. A blood and urine culture was ordered to check for infections.
The result of the culture is negative.
So what triggered the seizures? We had to ask the neuro doctors, and their response was that since seizures is a likelihood with Isabella’s syndrome, they think that it was just the time for her to have the seizures.
Will this be a regular part of our lives? 911 calls, her losing oxygen, ambulances, and emergency rooms? Not necessarily.She will be getting medication to control the seizures and she will be starting with a low dose of 0.5mls, and if she has a seizure for more than 10 minutes we can give her Diastat.
Will the medications control her staring seizures and the occasional brief blinking-jerking thing she does? No, it will not control the baseline, and reminded up that these small seizures were benign.
We left the hospital the following day, just in time for our renal appointment for that day at the clinic across the street from the hospital.
We went home with the good news that meds controlled her seizures within 24 hours and that her renal function is close to normal.
We pray that there will be no more seizure shenanigans.