Part III – Continued from yesterday’s post
Everything had to be ruled out before they could give us an answer. There just weren’t any clues as to what was going on. We were told that we could kiss her goodbye before she went to have her CT Scan. I bent down and brushed her bangs on her forehead. As I did, I noticed this red bump. It was sort of like a “goose egg” the size of a nickel.
“What’s that?” I asked my husband.
He didn’t know. I called my mom. She didn’t know either.
“Oh well…,” she interrupted, “she stumbled today in the kitchen. But it was like everyday that she stumbles. It wasn’t a big deal. She cried and then got up. It was over in five minutes. She even landed on her stuffed puppy.”
Was this a clue? I shared the information with the medical staff despite the fact it didn’t seem significant.
My husband and I got more snacks and coffee. We waited. Where I stood gave view into the area where the CT Scan was being done. I saw a Caucasian man hold up two pieces of film side by side and clip them to a brightly lit board. Then an Indian man walked in the room. He seemed to be of authority. It had to be the Neurologist. I looked at what he was looking at and, with no medical training at all, I clearly saw a brain. This brain picture was noticeably asymmetrical. The left side was long and thin. The right side was more round and full. That couldn’t be good to have an asymmetrical brain I though. And, I hoped it wasn’t my kid’s brain image. But it was.
We finally were admitted and moved upstairs from the ER to Intensive Care. Our daughter was showing signs of waking after about twenty minutes or so. Her lips were dry and cracked. Her long eyelashes were still and closed peacefully brushing her cheeks. She looked so little on that bed.
I got excited when her head turned and her hand moved positions. I had faith she would be OK but we really didn’t have any answers. Already about five hours had passed. The same doctor whom I had seen through the glass reviewing brain images entered our room. Sh*t, that was her brain, I thought.
He explained to my husband and I that there were currently three possibilities they were considering as a possible cause for our daughter’s condition: Viral or Bacterial (like Meningitis,) Seizure or Reaction to the Flu Vaccine (a condition called Guillain- Barre [GEE-ON- Baray].) she’d had earlier but that was least likely. He was soft-spoken and polite when he added that they still needed to do further testing, including have her under an EEG and MRI tomorrow.
“Tonight, in a few moments, she’ll need a spinal tap.”
I didn’t know what to think! Spinal tap was a band as far as I knew but it sounded dangerous and painful. I thought we were DONE with poking and prodding my kid. Little did I know our journey had just begun. He left the room and said he’d return with a resident soon.
By this time my daughter was awake and confused. She was also agitated with the oxygen tubes in her nose, IV in her arm and monitors hooked to her chest. You can’t easily explain to a two-year-old not to rip those things off. We did our best.
Spinal tap time was the worst part—hands down—of the hospitalization. Our daughter had to turn on her side, while my husband and I restrained her. Her back was numbed with something but she knew damn well this wasn’t going to be a pleasant experience. Her thrashing about made it difficult for the resident to hit the mark in her spine that they needed. I swear he must have stuck her unsuccessfully 4-5 times, as I tried my best to sing lullabies and keep her calm my husband and I both had to hold her down because she was resisting. It didn’t feel right doing that.
I was getting upset. The neurologist finally suggested that, while not ideal, they were going to have to put her under again. This time, it was a strong but quick form of anesthesia where she’d only be out for a couple of minutes. They had to get it right before she woke up. Thank God they did. I watched silently as the spinal fluid dripped out of my daughter’s back into a small tube. I had been praying for clear fluid. Cloudy fluid would’ve meant something bad.
We slept on a pull out couch in our clothes that night. The MRI was scheduled for 7 a.m. the next morning.
My daughter was thirsty and hungry by this time. Toddlers don’t understand why they can’t eat before an MRI. I couldn’t wait for the MRI to be done so we could just feed her and make her feel somewhat normal. At 5 a.m. we were already watching cartoons because she couldn’t sleep. Around 6:30 a.m. we were told the MRI machine was not working properly. They were trying to fix it but we had to wait.
At 11 a.m. my daughter had her EEG scheduled. Aside from pasting the electrode patches all over her scalp, it went as planned.
My daughter was hungry. She was given ice.
12:30 –ish p.m. We got an update. The MRI machine could not be fixed. They were either going to wait to see if the outside repair company could come within the hour or, if not, planned to transport us to another location via ambulance to get to the nearest machine. I couldn’t bear the thought of another ambulance.
I am skipping over lots of crying, videos, coffee, and stress here.
3:00 p.m. The MRI was ready. She went in.
Fast forward two days because this story is really long, we remained in the hospital. We waited for lab results to come back with more information. My daughter slept a lot and I watched a lot of Lifetime TV. I lost 5 pounds from my constant intake of coffee and eating my child’s Jell-O and cracker leftovers. My husband had returned to work so I was there alone.
In the late hours of the night, the children’s hospital was scariest. I didn’t leave my daughter often but to grab something from the kitchen. When I did, I could tell that some children clearly had more serious medical and physical conditions to contend with than we did. The beds in the hospital resembled cages for some of the rooms. I could tell as I glanced through the thin pane of glass on the doors or saw more clearly when the doors were left propped open.
One child, diagonal from us, was probably about eight or nine. He was in a large bed that resembled a back yard trampoline. It had high bars around it and they were padded with bumpers so he couldn’t harm himself. That child had a blank stare and empty expression every time I walked by—even when I smiled at him.
Another creepy room contained an infant. The infant crib was raised to the height of an adult so that the nurses, presumably, could reach in and get the child more easily. Inside that high-standing crib was a tiny swing. The baby looked like it was a bird in a bird cage swinging back and forth. I felt like I was in a horror flick. Unfortunately, it was my reality.
At the end of those two days, we had had a visit from our pastor and family members. For that, we were lucky.
We also met with multiple nurses, two neurologists and a neurosurgeon who concluded this: Our child had an arachnoid cyst in the left temporal lobe of her brain. She was born with it. Her brain was asymmetrical and her EEG abnormal. Some people have these cysts and never know it. They could live perfectly normal lives. Some people may have seizures. Our child had had a seizure.
Everything else that she tested for came back negative from HIV to Meningitis to the Flu. It could not be determined if the “stumble” she took that morning was enough to lower her threshold and trigger the seizure. We may never know. We were told only time would tell if our child would need to be medicated for epilepsy. We were given the option of medicating and temporarily passed on it (but had an emergency dose of anti-seizure medication if the event were ever to happen again.)
We checked out of the hospital on October 25, 2009 and took our daughter home with stickers in hand.
It was surreal. The unfortunate thing is that we are not special. There were hundreds of families in that hospital on that day going through some pretty bad things just like us. That says something.
So, that was a pretty accurate description of what my October 23-25 felt like last year. Unfortunately, it is only a snippet out of the story that has become our child’s ongoing medical diary. As we approach a year’s worth of medical visits, I thought it was time for me to reflect.
Writing this has been therapeutic in a way. I started to remember details of those days that I had almost forgotten. I hope that preserving this story will give our family perspective some day on how much we’ve overcome. One day, I think my daughter will want to know the story. She may be surprised to know how close we came to losing her.
I’m so glad we didn’t.
(Current situation update: For about 45 days after this incident, our daughter had similar mild atonic seizures and was hospitalized twice. However, the symptoms completely stopped in December 2009 and she has not been on medication. Follow-up exams show her condition is stable though what may have triggered the wave of seizures remains a mystery.
She still has asymmetry in the brain and she still has an arachnoid cyst. Yet, how that will affect her life in the future remains to be seen. For now, we are thankful and hopeful. To show our appreciation, our family walked to support epilepsy awareness in April 2010 and raised more than $1,000 for the Western Ohio Epilepsy Foundation.)