They say the first one is the scariest. Frankly, they’re all terrifying.
The morning started off routinely. After my shower, I woke Kitti up so she could start getting ready. She came to my bedroom for help with her necklace and was in good spirits getting ready for a day of speech therapy, a doctor’s appointment, and then lunch with Eleonora. She was wearing a new dress from Ann Taylor, always a sure sign that she’s looking forward to some social time and feeling confident.
Normally I beat her downstairs by a few minutes and start making breakfast. As Kitti works more and more towards independence, sometimes she will take care of that while I pack lunch. That morning, she made it down first and I could hear her toasting her waffles. I knew she’d soon spread peanut butter on them, and then sit on the couch to eat and surf her phone.
As I brushed my teeth, I faintly heard a “whoooosh”, thinking to myself that was odd, but continuing on. Then again, “whoooosh”. I stopped brushing my teeth to try to hear the sound better – it was nothing I had heard before in the house. By the third “whoooosh” I decide to poke my head over the stairway to check on Kitti.
There was Kitti, slumped down on the couch, head cocked to the right with her eyes closed. Her arms were wound tightly with upturned fists facing in the opposite direction of her wrists, her fingers curled so tight her nails were piercing her palms. She’s stiff as a board, but violently convulsing at the same time, with churned waffles flowing from her mouth onto the arm of the couch.
Rushing down the stairs, I fling the toothbrush out of my mouth and hear myself yelling “Kitti! Kitti! Kitti!”. I knew enough about seizures to recognize that’s what was happening and know that you shouldn’t restrain while convulsing - but that’s about it. I could already see her head was protected by the couch cushion, and I quickly jammed my finger in her mouth and did a “sweep” to clear the food. I later found out that is absolutely what you are NOT supposed to do, as your finger can easily be chomped off. As it turns out, I also later learned later that the “whooosh” sound was the rush of breath leaving her mouth with each respiratory system convulsion.
I wish I could say I coolly and calmly called 911, but it verged more on crazed and chaotic – spitting out my mouthful of toothpaste so the operator could understand me. The next few minutes could actually be quite comical in hindsight, except for the seriousness of the situation. After I shouted our address, the operator immediately had me turn Kitti almost to the point of being face down, to ensure that she would not choke. Now at this point, Kitti is still unconscious and convulsing, her skin is bright red and her body temperature is so hot that she is sweating profusely. Somehow, she has developed the strength of an elephant and I heave her body away from the couch arm – now she is face down, her upper body covering the entire loveseat. I confirm to the operator she is in a better position now, and she reminds me to unlock the front door, as the ambulance is soon to pull up. But – Kitti’s new position could easily have her roll right onto the hardwood floors, putting her head at risk - even if I make a mad dash to open it. For whatever reason, I decide the best course of action is to lay down next to Kitti on the couch, wrap my arms around her waist, heave her body so she rolls over and is laying on top of me, and then back flop myself down onto the floor so her head doesn’t hit anything. I then shimmy out from under her and place her head on a throw pillow.
As I hear the ambulance sirens pulling up outside, Kitti goes completely limp and I gather her upper body into a hug. I keep talking directly in her ear, although inside I’m freaking out and begging for her to open her eyes. When she finally does, there’s zero recognition of me, but I can read the fear and confusion in her face. My crazed state flees, and I slowly and in short sentences tell her help is here and all will be okay. With a click, her eyes find focus, and with a dozen medics circling around her, she begins to cry.
Coming home the next day from the hospital, we realize that my outfit has peanut butter stains, and her beautiful new dress has toothpaste all over it. I can’t imagine what the medics thought they walked in on, with two gals rolling around the floor seemingly spitting on each other. Sometimes you have to find the humor to take the edge off the scariness.
The next one followed just two weeks later, this time seat belted in Ted’s car.
Last week, Kitti was hospitalized for an intensive inpatient seizure study, so that the doctors could figure out what part of the brain the seizures are stemming from and to determine the best course of treatment moving forward. In what can only be considered torture, Kitti was taken off of seizure medications, forced to stay awake for 24 hours, and then subjected to strobe light stimulation and then hyperventilation. All of this is done in an effort to irritate the brain to induce a seizure for observation. It is captured on video while also having the brain waves recorded via 30 electrodes placed on her head.
As Kitti began hyperventilating, I sat holding her hand and talking to her. The look that crossed her face is one I will never, ever forget and brings tears to my eyes as I write – a look of utter fear and plea for help right before her seizure took hold. Instantly, a brigade of medical professionals rushed into the room, each with a task from oxygen mask to administering IV medication to monitoring her pulse. And then once again, her eyes find focus.
Recovery from a seizure for Kitti takes anywhere from 24-48 hours, requiring a lot of sleep and low brain stimulation. She completed numerous card paintings, binge watched Netflix, and once again, became the nurses’ favorite on her floor. Medication was changed based on the doctor’s observations, and a surgery was recommended for Kitti’s consideration. That surgery takes anywhere from 6-12 months to titrate, which is well past her USA status. The good news is that the doctors were able to confirm that Kitti gets an “aura” or some sort of indication right before a seizure (we think it’s a feeling in her right arm perhaps), which she had been unable to understand and/or verbalize when asked previously. She now carries an emergency seizure medication but is hopeful that the new daily medication will stave off any future seizures.
This is a very personal experience for Kitti, and one that I was very hesitant about sharing on her behalf when Kitti suggested the topic. She is very open to sharing her experiences and encouraged the blog post as she’s an “open book” (her words).
Perhaps for Kitti, only her silence is the true seizure.