A Story which Should Not Have Happened, but Thankfully Had a Good Ending

As this is a true story, I'll be changing the names of the people involved and not mentioning the name of the hospital.

 

When Carol was a toddler, born to a neighbor nearby, we knew something wasn't *right* with her. Couldn't put my finger on it and these are the times when I try to turn off my counselor/medical brain and try NOT to diagnose people. But still. It wasn't autism, asperger syndrome, cerebral palsy….but something. Carol was a happy child, eager to interact and smiled up at you with huge brown eyes. But when she walked or ran, her gait was odd and her hands tended to flap. I kept hoping the doctors her mother, Justine, took her to would figure it out and that as she grew, she'd be fine. This was my hope, it was my prayer, but it was not to be.

As time passed Carol developed seemingly normally and was a very creative, happy child. But still there was…something. She was imaginative and enjoyed engaging with me for tea parties, reading from her books, and playing with her dolls. She was not developmentally disabled, made friends easily, and enjoyed school. One Christmas she was so fascinated with our nativity set that I loaned it to her family so she could enjoy it through the season. She liked making up stories about Mary and Joseph, the Kings and shepherds and moving the characters around near Jesus in the manger.

When Carol was about 8 she began having petit mal seizures which were generally preceded by her saying she saw characters from her story books. Immediately before a seizure she'd usually say, "I see Pinnocchio….." and then it began. As these were petit mal seizures, they did not include more than her standing still, seeming to stare off in the distance and lose touch with her surroundings for a few moments. Sometimes there was also a bit of the hand flapping. Her mother Justine added a pediatric neurologist to Carol's list of doctors. After batteries of tests and a regimen of medications, Carol's seizures were controlled for quite a while. She went to school, made friends, played imaginatively, loved to learn new things and was a happy little girl. Still….there was something I could not put my finger on. When she ran, her gait was strange with her legs overly wide apart and she swayed from side to side. From time to time, the hand flapping also accompanied the running or would happen when she was happily excited about something. I wasn't asked for an opinion, and I knew she was under the care of at least 3 physicians, so I didn't comment. I mean, it was all pretty obvious. What was I going to say…do you notice the odd gait and flapping movements? Have you brought these to the attention of the physicians, particularly the neurologist? Justine and her husband Steve were well educated people with much concern for Carol. I wasn't going to sound like a jerk and bring up this stuff without it being mentioned first by them. Personally, I had concerns that she should have been seen by a pediatric neurologist who sees more complex cases like this on a regular basis (like at Boston Children's) but I didn't feel it was for me to say.

Time passed and Carol's seizures were no longer being well controlled by her medications. Different meds were tried with varying results, but still the seizures not only continued, but they worsened. There was no predicting them and they grew more severe. From petit mal seizures, they became a more worrisome kind referred to as status seizures. More trips to the pediatric neurologist, more meds. More prayers from me.

Suddenly in the middle of the night our phone rang and it was Justine calling me in a panic. She'd already called the hospital. "Come quick! Carol's having continuous seizures and I don't know what to do!" I set a record for throwing on a sweater and jeans, grabbed purse and car keys and with my car running at her house, yelled for Justine who was holding Carol, to get in. We were going to a hospital in a nearby city, it was 3:15 AM with zero traffic, and this was much faster than waiting for the ambulance service in our area. It was a straight shot. I knew I could get us there in a flash. Carol continued to seize off and on and in minutes we were at the Emergency Room entrance, just as Carol went into respiratory arrest.

I parked the car while Justine raced Carol into the ER where they were ready for her. She was there for a while being stabilized. I got to sit down and be thankful. Although it wasn't a holiday or a weekend, the hospital was busy, and the pediatric ICU where Carol was soon admitted was understaffed for the number of patients they were caring for. I accompanied Justine and the staff with Carol in the elevator as we went up to pediatric ICU. Carol's seizures were still not under control. I asked, "Has her pediatric neurologist seen her yet?" No "Has she been called?" Yes "When is she anticipated?" Anytime now (said with irritation by the staff member on one end of the gurney).

Soon Carol was settled into a *room* in pediatric ICU and Justine and the two staff (I was unclear if either were nurses) were on their way out, leaving me there alone with Carol who was still having seizure after seizure. "WAIT!!!!" I said. "Who's going to be caring for Carol?" I sort of barked. The two staff looked at one another, we all looked at the two ICU nurses who were flying around from crisis to crisis in the beds around us, and then their eyes settled on me. "Justine said you used to be a paramedic. That true? You drive like one". I said yes…..but my license has been expired for a long time. They inquired, "You still know how to suction a patient and take vitals, though, don't you?" I couldn't believe what was happening. I'm this woman in jeans and a sweater, they've seen no ID, no credentials, I could be Jaqueline the Ripper for all they knew….did they know how to spell "l-i-a-b-i-l-i-t-y"? And mom (Justine)? She said "I need to go have a cigarette. I'll be outside".

I said certainly, I know how to suction a patient but I'll be expecting one of those nurses in here every few minutes and…PLEASE call the neurologist and tell them Dr. Brook says this is an EMERGENCY and she needs to be here NOW. Carol was having status seizures and those are very dangerous and can cause brain damage.

All night long, I comforted and cared for Carol and every few minutes she'd seize and I'd suction. But I wasn't recording any vitals. Nah-uh. If the nurses weren't in there in a timely fashion, I'd call them and one would come in and take care of those details. I was committed to doing my absolute best for this little girl, but I wasn't putting my name on anything. This was just too surreal and bizarre.

And Justine? Never saw her again all night long. Apparently she had lots of cigarettes to smoke outside. I do know this is REALLY hard on parents, but come ON. She never even came up once to check on her daughter. And the pediatric neurologist? Shortly after 8:00 AM she rolled in. I could not freakin' believe it. I gave her an overview of how the night had progressed while she read the chart and then I left. I called a nearby friend and she came and gave me a ride home. I had nothing to say to Justine beyond the fact her doctor was with her daughter now, receive her "thanks" and say goodbye. A story which should not have happened, but thankfully had a good ending.