Mayday on One May Day

It was one of those typical days. We have our routine going on and everything was just how it should be. It was close to 8pm, around after dinner, and we were with extended family at an aunt’s house. I was helping to clean up after dinner while the husband was getting ready to pack up and leave. My son was enjoying himself as he played and laughed with his cousins. I was getting ready to wash some dishes. I then heard my husband, calling for me from the living room, asking for some assistance as Isabella started throwing up. I took some kitchen towels with me on my way.


When I got to where they were at, I saw that look on Isabella’s eyes. That look that I saw 6 months ago. That “focal seizing look”. I then told my husband that I think Isabella’s having a seizure. He didn’t think she was and even added that Isabella is just sleepy (which of course a possibility since it was already close to 8pm… her bedtime). I insisted that she was seizing and went to pretend to put my fingers to touch her eye just to demonstrate, and make a point, that Isabella was just staring emptily into space. She did not blink. My husband was trying to talk to her… distract her, to demonstrate his point that she was not seizing. I still insisted and told him that this “look” was the same look I saw that first time that she had a seizure. I started looking at the clock while he took Isabella to the bathroom with her Keppra medication as it was almost time for her to have it. He gave it through her g-tube.


I started collecting our stuff…. The whole family oblivious of what was already going on. Then followed my husband to the bathroom to check how things are going. She was throwing up her meds, looked weaker, tiny twitching started to happen. I told him that it will be 10 minutes in 2 minutes. My husband finally acknowledged that it was indeed a seizure and asked for me to come get the Diastat.


It took awhile for us to figure out how to open the medication. We had to re-read the instructions. We kinda both forgot how we were told to administer it. When we finally able to give it to her, I asked my husband what happens next. He said that it is supposed to take effect immediately as it is administered rectally. We waited. I was still watching the clock.


I went to my aunt and told her that Isabella is having a seizure and if it does not stop we would be calling 911. My husband called our son to let him know that his sister is seizing. We wanted him to see what her seizure looks like. He figured that had this happened on our drive home we would not even know that she was already seizing in her car seat and since her brother sits with her at the back of the car, he can help us see it.


My son already knew what this meant…. He was going to stay behind while Mommy and Daddy leave to go to the hospital. Thank God we were at a relative’s house.


10 minutes passed (which actually felt like forever since the seizure started), and the seizing has not ceased. I called 911. I stayed on the phone and my husband was talking to my aunt figuring out logistics for Eloi and driving, and pick up, etc. We were quick… we were thinking straight and we were on top of it. I stayed on the phone with the 911 dispatcher and waited for the paramedics to arrive at the front of the house. When I heard the sirens coming closer I called for my husband. When the paramedics arrived, instead of having them come to Isabella, we took her to them. It was one less trauma for all my nephews and nieces and the rest of the family to see. My husband and I were calm and collected…. Unusually quiet, but calm and collected nonetheless.


I rode the ambulance to the nearest hospital. My husband followed. When we got there I gave them the rundown of things that she has. I could just tell them the name of her syndrome as that covers all of it, but since it is rare, and they can’t even spell it, I had to name them all her complications one by one. I have to stress over and over that she has kidney issues just to make sure that they will not give her anything that can damage her kidneys. We would not want to add one more thing to the already long list of things. I sat and watched them work on her.


The ER team poked and prodded and administered does of different kinds of medicines. Then they decided to intubate… I felt it was not necessary but let it go, as I know that they are doing their best and following procedure and have every good intention to help my daughter get through the seizure. I can’t really do much, but to wait and watch and pray.


We were asked questions and we filled out paper work… an hour after we got there, the seizing finally stopped and Isabella was heavily sedated on the ER bed. That’s when we started talking to them about taking Isabella to Stanford as that was what was done the first time she had a seizure… and also because they know her there. They called Stanford and their team will be coming to get her. They got there passed midnight and we were settled in at Stanford around 1am.


The first thing they did was extubate her, and while we were there Isabella was trying to wake up. She was groggy and crying, but awake. She needed to sleep though but she kept trying to be awake. Eventually, after trying to fight the meds, the sleepy meds took over and she was asleep.


My husband and I were not worried nor were we crying. We were just there. A little stoic maybe… but we were there. We started talking about how to break the news to our son that we would have to postpone our trip to the Aquarium the next day (one of the three trips that we already promised me but didn’t get to go because something comes up with Isabella that prevents us from going), planning how to get our son to school on Monday, how to get a substitute for work, how one of us would have to go home and one stay at the hospital. Then we remembered the dog we left at home in her crate (poor doggy… she would have to go make sacrifices too).


The next day, the first thing that Isabella did was try to sit up. She was still too weak and groggy from the meds that she can’t. She was grumpy and crying. After rounds we were told that they need to adjust the meds. They suspect that the seizure happened because she was already bigger and the dose was not enough. A little later after a consult with our neuro, we were told that she was going to be discharged.


When we got home and got settled in, and perhaps after all the adrenalin has left my system, I finally found the time to feel and cry over what just happened. I was worried about how the seizure is going to affect her development. How far back will Isabella lose the skills that she (and everybody working with her) worked so hard to develop?


When I awoke the following day, I saw Isabella sitting like she used to, rattling a toy and smiling as if nothing happened. My girl is so resilient…. Mama’s got to learn how to become more like her.

Ready for a garden tea party!

(This picture was taken that afternoon before Isabella's seizure.)