I've been trying to write for a few days now, but haven't been able to find the words. So for now, I will just try to stick to the facts for those that will continue to lift Tessa up in prayer.
Sunday evening Tessa had a grand mal seizure. Her first grand mal seizure. Up until now, her seizure disorder has been considered very mild ~ only having a handful of them since her diagnosis, and only noticeable in her eyes and not lasting much longer than a minute or two.
I was home with Tessa while Darin and Parker ran to grab us some dinner. Darin texted to let me know the line was long, and I wrote him back to let him know that Tessa had been screaming her head off, but that she had finally settled down and fell asleep, all was good. I had taken her outside to get some fresh air, took her ears off, got her pacifier and proceeded with the butt pat (that took me back). It had been a rough day...but Tessa has rough days from time to time, we were just doing our best to make it through.
We were chilling in my lawn chair on the driveway, and just a minute after she fell asleep in my arms, her left hand/wrist started twitching. It was strange. All I could think was that she hadn't been asleep long enough to be dreaming. Tessa does have clonus in her legs...involuntary, rhythmic, muscular contractions and relaxations. I have seen this pattern of movement in her legs, but never in her hands. I pulled her in close to see if I could 'snuggle' it out of her, but no luck. So then I took her hand in my hand, and immediately got an eerie feeling. I could tell the movement was resistant to my touch, to my attempt to interrupt the pattern. Moments later, Tessa's eyelids opened, but she was not with me. I realized later that she had already fallen into a state of unconsciousness by this time, but in the moment, I was terrified and in shock over everything that was happening. Tessa then began to choke/struggle to breathe. Her head had begun to mirror the same involuntary pattern of movement, and she was struggling. I faced her away from me, was patting her back and tilted her forward slightly, and all of the sudden she vomited. She was unconscious, but vomiting...it was not making sense. The minute I turned her around after she threw up, everything got slightly worse. From that moment forward, Tessa didn't swallow again. Her movement in her left hand/arm got increasingly more rhythmic and so did her head movement. She was continuing to struggle to breathe.
By this time, I was already on the phone with 911. The first thing they asked was how long the seizing had been going on...my best guess at that point...3 minutes. When Darin and Parker drove up, I yelled out "Tessa is seizing and she won't stop". I was bawling and more frightened than I have ever been. The dispatcher was instructing us to keep her upright, make sure she doesn't aspirate, suction her mouth and keep it clear....help was on the way, good help was on the way. Darin took over the duties of holding her upright and suctioning her mouth. I stayed on the phone and continued to update the dispatcher with how things were progressing. At one point I went back outside to check on Parker...our neighbor was helping us keep an eye on him while we were waiting for the ambulance. The dispatcher asked me to give an update on her, what had changed. I ran back inside. Darin was standing at the kitchen sink holding Tessa, focused on suctioning her mouth. Before I got up close, Darin told me that her right arm had begun to twitch just like the left. And when I walked in close, I began to panic....Tessa's eyes were turning black and blue...and her lips...blue. I yelled in the phone "Oh my god she's turning blue" and at that very moment the dispatcher said, "the ambulance is at the gate, can you go let them in?" "do you have a way to let them in". Their timing couldn't have been better. I only had a split second to see my precious baby girl in that terrible state before I had to spring into action and let the ambulance in. I waved them to our drive and Darin came out with Tessa. We immediately handed her over to the paramedic and quickly began explaining the situation. He scooped her up in his arms and carried her into the ambulance and laid her on the stretcher. He immediately started an IV and as Darin was keeping a close watch, I stepped back to call the doctor. Darin stood in the doorway of the ambulance and I was helping with Parker and trying to get in touch with a doctor at The Children's Center. While I was waiting for a doctor to call me back...Parker came and grabbed my hand and looked up at me and said "Mommy, I just don't want Tessa to die". My heart broke in a million pieces. Fighting back the tears with everything I had, I looked at him and told him that they were here now (the paramedics) and they were going to help us take care of her. Sitting here now, I can think of a million other things that I probably could have said to him to help him find comfort, I'm not sure why that's the best I could do. But it was enough. Shortly after that, Darin hollered from the ambulance that they got the seizure stopped and that Tessa was stable. The paramedics had given her 1 mg of versed (a benzodiazepine) so, needless to say, she was resting. Beginning to end, the seizure was somewhere between 15 and 20 minutes. The absolute longest minutes of my life.
I gathered up my things to ride with them to the hospital. The ambulance ride was stressful...text family? don't text family? Wait until we know more? At one point, the paramedic asked me if Tessa was home visiting for the weekend, I turned to him and curiously said "I'm sorry?"...and he said "well, I heard you talking to a doctor at The Children's Center, is she a patient there?" I told him she was an
outpatient there and that she lives at home with us...that her specialists were there, but that she's always lived at home. It was a strange moment...left me wondering for a minute if they thought maybe we weren't prepared to handle this because we weren't her full-time care providers or something. In all reality though, it was a reasonable question.
Once we got to the ER the doctor asked me what time this all started...I looked back at my last text to Darin...I had sent it around 7:10 p.m. A friend had picked up Parker from the house and Darin was able to meet me and Tessa at the hospital. We updated family and asked for prayers. They came in and took some blood to check and make sure there wasn't any kind of underlying infection or anything. Everything checked out. That was the only time Tessa woke up, when they took her blood. She rested the entire time we were there. The ER doctor was thinking we would be able to take her home, but he was waiting to confirm that plan with Tessa's neurologist. We left the hospital around 11:30 p.m. with a prescription for diastat (another benzodiazepine), a plan in case of another emergency and instructions to follow up with Tessa's neurologist.
We drove home in complete silence, got Tessa situated in her bed and then I curled up in a ball on the couch and cried. I was thankful Parker had a place to stay that night, because I needed some time to fall apart. I can't count the number of times I peeked in Tessa's room before I went to bed...or how many times I got up that night to check on her. The next morning was somber.
It's hard to realize the impact this has had on all of us. Tessa has been having some rough patches throughout the days. On Tuesday, Parker was with her in the kitchen while I ran to the bathroom. When I came back in the kitchen, Parker was standing next to Tessa, rubbing her arm and saying "Tessa please don't cry or Mommy and Daddy are going to worry that you need to go to the hospital like the other day." Man does that little boy love his little sister.
We have an appointment in the morning with Tessa's neurologist. We need to get educated, make some new plans, and begin journeying down this slightly new road. We are trusting that the Lord will continue to pick us up and carry us on down the way.
~Whitney
