Drew Strong(er) #4 (April) — The Return of the Seizures

Thursday, March 22, 2018 — 8:15 AM

”Excuse me, but which seat is 26A?” I asked the young lady sitting next to the window even though I already knew the answer.

As this was Drew’s first time on an airplane, I purposely purchased him a window seat for our flight to and from Seattle for his High School Choir Tour. However, as we slowly made our way down the center aisle of the plane, it became more and more apparent that someone else had taken his seat.

The young lady casually looked up at me, pulled out one of her ear buds, and asked, “What did you say?”

I held up Drew’s Boarding Pass and pointed to the large print that said “26A” and repeated, “Which seat is 26 A?”

She shrugged her shoulders and said, “I don’t know. Their not labeled.” She then put her headphone bud back in her ear and pretended not to notice me or Drew. Her phone was already plugged into the charger, her carry-on bag was neatly stowed under the seat in front of her, and her seat belt was buckled. It appeared that she had carefully spread out her trench coat on the seat as she sat upon it and seemed quite content not to budge while Drew and I held up the line of passengers waiting to finish boarding the plane.

I turned to Drew. “Well, let’s sit down for now and get out of the way, but I’ll ask the next flight attendant we see.” Although it didn’t seem like there were many empty seats left, there were still about 40 people lined up behind us.

I quickly helped Drew hoist his carry-on bag into an overhead bin above our seats, and then I plopped down into 26 B and Drew followed behind me into 26 C. It took several more minutes for the last traveler to move past us down the center aisle, at which point one of the stewards was making his way towards us and closing overhead bins as he came.

When he was close enough that I could catch his attention, I held up Drew’s Boarding Pass toward him and pointed again at the large 26 A and asked, “could you tell us which one is seat 26 A?”

He smiled and answered, “Well, 26 A is the one next to the window. I’ll let you figure the rest of them out.”

I turned to the young lady next to me and saw that her earbud had been out of her ear as I talked to the steward. The expression on her face told me that she was not very happy with me for making her move, but I didn’t care. I smiled and said, “If you don’t mind, I think you’re in my son’s seat.”

”Whatever,” she grumbled as she undid her seat belt and started gathering her belongings.

As Drew finally sat in his seat next to the window, he raised the shade and looked out onto the sunny tarmac. He nervously smiled and asked, “Do you think we will be able to see our house?”

”Yeah,” I nodded. “I believe we’ll be flying over it briefly before we turn toward Seattle.”

Sure enough, the plane passed over our neighborhood and Drew thrilled at the sights of the Salt Lake Valley below us. However, it wasn’t long before we entered a bank of clouds that obscured our view of the ground below, so he quickly turned his attention to the screen on the seat in front of him. I helped him scan through several movie offerings, but as soon as we came to Thor: Ragnarok, he didn’t need to go any farther and he settled in for the rest of the flight.

Drew and I were so incredibly blessed to be able to participate in the Copper Hills High School Choir Tour this year. In January when Drew first asked if he could go, we thought it would be impossible. However, through the coordination of his several doctors and assistance of the high school administration and his choir teacher, Drew was able to travel and participate in nearly every activity. Further, he almost felt like a normal high school student again for a while as he associated and joked and laughed with his warm and caring friends. When asked about his favorite part, he mentioned being able to attend the Seattle Washington LDS Temple, which Drew and I visited on Friday evening during the only tour activity he couldn’t participate in with the high school. Still, he loved being a part of such a wonderful experience.

Sunday, April 1st — 6:40 PM

“Dawn! Dawn!” Drew’s cousins yelled through the open window. “Come quickly!”

My parents had their whole brood over for Easter dinner.  Dawn and I were sitting inside visiting as we finished dinner when the cheerful conversation was shattered by the screams from the front yard.

“Mom!” one of Drew’s sisters yelled. “Dad!”

I stood up from the couch and looked out the front room window where Drew was sitting on his grandmother’s front porch talking to his cousins, but Drew was no longer talking, rather, he was leaning against the railing and convulsing.

I threw my plate in frustration and immediately ran to the door to see that Dawn had arrived and was crouching down in front of Drew trying to protect his head from banging against the metal railing. I sprang down the steps and knelt down beside her.

Drew’s face was contorted and twisted to the right, his eyes rolled up, saliva falling from his mouth and forming a puddle on the steps. His body was slumped forward and bouncing from the spasms. As I looked up into his face, I could see a bluish tinge around his lips and quickly realized he wasn’t breathing.

“Help me sit him up,” I said.

My sister stood behind him to keep him from hitting the concrete stair while I quickly guided his shoulders up and his trunk erect as he leaned backward. I gently held his face in my hands.

“Come on, Buddy,” I whispered. “Snap out of it. You can do it.”

For what seemed like an eternity, the muscles in the right side of Drew’s face jerked and spasmed violently. We watched helplessly, unsure what to do as his body reacted to the electrical storm firing in his head.

Fortunately, the seizure subsided gradually and Drew’s eyes slowly rolled back downward. He turned his head toward me and asked, “What happened?”

“You just had a seizure,” I said.

“I did?” Drew asked. “I guess I blacked out.”

In reality, this was a new experience for Drew because he couldn’t remember the seizures in the hospital. Later, Drew’s brother would comment that this would mark the end of Drew’s seizure-free streak. This Easter Sunday would mark the first full-fledged seizure since September 10th, or nearly 7 months.

Saturday, April 7th — 6:40 PM

”Mom! Mom! Drew’s having a seizure.” We were busliy making final preparations for a birthday party for Drew when Alex yelled from the basement.

”No!” Dawn whirled around and ran back down the stairs. I dropped the trash bag I had been taking out and quickly followed Ashley and her mother down the stairs.

As I rounded the corner, I could see Alex holding Drew from behind. Dawn was stooped down in front of Drew, who was standing but hunched forward at his waist, one arm up in the air writhing. Drew’s torso and head lurched repeatedly back and forth in an awkward but rhythmic pattern. Saliva hung from Drew’s mouth as a low groan emanated from his throat.

”Drew, keep breathing,” Dawn said.

I ran over to Alex and grabbed Drew from the front, “Help me lay him down on his side. Can you grab us a pillow?” I asked Dawn.

Together, we slowly lowered Drew to the floor. His eyes were rolled up and to the left. His left cheek puckered in and out which twisted the left corner of his mouth into something reminiscent of the Joker in the Dark Knight movie. His left shoulder and arm were writhing and spasming.

”Keep breathing, Drew,” I encouraged. His lips were starting to turn blue. “Come on, son, breathe!”

For the next 30 seconds, we agonized as we watched him continue to seize. In my mind, I kept having flashbacks of the ICU and tears welled up in my eyes as I sat there helplessly.

Finally, the seizure stopped. It took a few moments, but the color gradually returned to his face.

“You had a seizure again,” his mother explained.

“I know,” Drew answered. “I could tell, but I couldn’t do anything about it and it was really hard to move. Can I still have my birthday party?”

“Of course,” I chuckled. “You probably better rest while we finish getting everything ready.”

Happy Birthday, son. I don’t know if you realize how much I appreciate the chance to tell you these words, because for a while, our family did not know if we would ever again have the chance to celebrate your birthday with you.

Monday, April 9th — 5:56 PM

I answered my phone and heard Ashley’s voice. ”Where are you?”

“I’m on the freeway, stuck in traffic,” I answered. “Why?”

”Drew’s having a seizure!”

”What? Not again!”

I slammed the steering wheel and muttered under my breath at the line of cars in front of me. I had left work a little later than usual and had to stop at the store to buy some motor oil as the little light on the dashboard had popped on while I was driving to work in the morning. Now with one of the lanes blocked by a traffic accident, I was stuck in four lanes of bumper-to-bumper frustration.

”He started out having a hallucination,” Ashley exaplined. “But now I think it’s a seizure….”

I inched the car forward and stopped. “Well, is he still talking?”

”No,” Ashley said. “Hold on….”

With that, I could tell that Ashley had put the phone down and I could hear Dawn screaming in the background, “Ashley, move that end table so he doesn’t hit his head.”

Silence…. I inched the car forward again.

”Breathe, Drew! Breathe!” Dawn screamed.

”Come on, Drew,” I could hear Ashley say.

”Help me lay him down,” Dawn said. “No, Drew, you have to keep breathing.”

Stupid traffic. Why now?

”Drew! Drew!” Dawn was frantic. “Go get my purse, Ash.”

”Why?”

“It has his rescue medicine,” she explained. For seizures that last longer than 5 minutes, or if he has a cluster of 3 or more seizures within 15 minutes, the doctors gave us some medicine that we can spray up his nose to help the seizures stop, but when they would give it to him in the hospital, he would be extremely sleepy and groggy afterward.

“How long long has the seizure been going?” I asked.

“About three minutes or so,” Dawn answered,” but now it’s hard to tell.”

“Why is it hard to tell?”

“Because his eyes are closed,” Dawn said.

“Well, is he still having spasms?”

“Not now,” she answered. “His whole body was spasming this time, so it was hard to lay him down. We had to hurry and move the side table away from the couch because he was jerking so much.”

“So the spasms stopped, which is good,” I continued. “So why do you think he is still having a seizure?”

“I don’t know,” she cried. “He won’t open his eyes or talk to us. I wish you were here….”

“So, open his eyelids and see what his eyes are doing,” I explained. “Are they rolled upward or to the side?”

After a moment, Dawn answered, “It’s hard to tell. They’re rolled up a little.”

“Then he probably isn’t having the seizure any more,” I said. “Sounds like he had a Grand Mal seizure, but now it’s stopped.”

He was wiped out for the next couple of hours. Drew was able to wake up and take his evening medications, but then he went straight to bed and slept until morning.

After this incident, we reviewed his whole seizure plan and made sure we were better prepared in case the next seizure doesn’t stop.

Over the next few days, the seizures continued to increase until he had five seizures on Saturday, April 15th. I had been in contact with his doctor about mid-week, and he increased his seizure medicine some. However, because his seizures continued to increase, the doctor ordered some lab work on April 17th that revealed his seizure medicine levels were still low, so we increased his dose again and the seizures gradually tapered back down over the next several days.

Monday, April 23rd — 6:00 PM

On my way home from work, I usually stop at the mailbox that is located a half-block away from our house to grab our mail. Today was no different, but as I opened the door and stood with the mail key in my hand, I looked up the street and saw Drew’s younger sister outside on the front lawn of our house.

I waved hello, but she motioned with her arm for me to come home.

I waved again, wondering if she misunderstood. She took a couple of steps toward me and frantically motioned again for me to come home. I forgot the mail and got back into the car.

As I pulled into the driveway, she approached my car. I opened the door and asked, “What’s up?”

“Drew crashed on his long board,” she answered. Her face was filled with worry and she looked a little pale.

“What?” I asked. “How?”

“He was practicing and got going too fast.”

“Where is he?”

“In his room, but they’re trying to clean him up.”

I ran into the house and proceeded to his bedroom. Drew lay on his bed while his mother daubed at his face with a washcloth. His sister stood beside her and worked on Drew’s knee with another washcloth.

I walked closer and saw blood running down his right cheek and neck. His right eye was already bruising where the skin wasn’t torn away. His T-shirt had numerous little holes, like a cheese grater, and was speckled alternately with blood stains, gravel, dirt, and little blades of grass. The left knee of his denim pants were ripped open from just above his knee cap to halfway down his shin. His jeans were equally bloody and dirty. Drew rigidly held his arms in the air from obvious pain, but when he saw me enter the room, he smiled and said, “Hi, Dad.”

“Hello,” I answered. “What’s going on?”

“Oh, just a little long boarding,” he said.

Every day we encourage Drew to exercise and work on regaining his strength and balance. This wasn’t the first time he had ridden his long board, but his previous success may have given him a false sense of security. As he pushed his limits, he started accelerating too fast and, as he tried to stop, he hit the curb and lurched forward, landing on his face, hands, elbows, and knees.

“Does this look like it will need some stitches?” his mother asked.

“Yes,” I answered. “I think his left wrist needs an X-ray also. Hey, Bud, do you think you can walk to the car if I help you?”

“I think so,” he said.

Three hours later, we returned home with three stitches below his right eye and a splint on his left wrist. Fortunately, the X-rays of both wrists were negative for fractures and the CT of his head showed no signs of bleeding. Still, the doctor told us to keep a close eye on him the next few days.

Despite my worry, I was proud of him trying to do more and just trying to get back to normal. The only thing I could really be upset about was that he refused to wear a helmet, but that won’t be an option if, and when, he chooses to ride his long board again.

Thursday, April 26th — 2:55 PM

As we were sitting in the jam-packed Marriott Center, waiting for commencement exercises to begin for Drew’s older sister who was graduating from college, I sent some texts to the kids.

“Did you find out if you get the nice camera this weekend?” I asked Drew’s younger sister.

“Yes, I will have it.”

“Then we should take some pictures for mom as a surprise for Mother’s Day. We can go to the nice gardens on the south side of campus after we help Alex finish moving out of his apartment.”

“Sounds good.”

“How do you think my face will be?” Drew texted back.

“Awesome. We’ll get your good side. Or maybe some make-up and/or photo shop,” I typed.

“Dude, I hate make-up,” Drew responded.

“We’ll get ‘manly’ make-up,” I offered.

“Where would we find that?? :)”

Tuesday, May 8th — 9:30 PM

“Oh, I think I’m going to throw up,” his mother said.

“Well, go in the other room. I got this.” Dawn stepped out of the bathroom and into the hallway, but stood at a distance and watched with worry etched across her face.

I was busy working on a boil on the back of Drew’s shoulder. We’re not sure if his increased acne is attributable solely to one of his seizure medicines, or if his brain injury caused an increase in his hormones (since the coma, Drew has had to shave more often than his older brother). Either way, his acne has been severe at times despite constant washing and treatment. Over the weekend, one of his zits turned into a large boil.

“I can get it to drain, fortunately,” I said as I continued to squeeze the large, red bump. “But there is still a lot of swelling and fluid deep in his shoulder and up into his neck.”

I continued to rub his shoulder and neck muscles, pushing as much of the fluid toward the opening at the top of the boil. As I did so, copious amounts of yellow, bloody fluid oozed out and I quickly wiped it up with some gauze.

”Will it go away?” Drew asked. He was sitting on the closed toilet lid with his head hanging down, eyes closed, squeezing a towel to help combat the pain.

”Eventually,” I said hesitantly. “I’m just worried at how big and red and swollen it got in such a short time.” It had only been since Saturday.

”Ow!” Drew yelled. “Stop, Dad. Come on!”

I eased up as, finally, less pus and mostly blood erupted from the wound.

”I think we better take him into the doctor tomorrow morning,” I said as I studied the deep hole on his shoulder. “I think I could stick the end of a pencil in there now, and it wasn’t that deep yesterday.”

”Are you sure?” Dawn asked. “We were just there a few days ago to get his stitches out of his cheek. What will the doctor do anyway?”

“Maybe put him on an antibiotic,” I said as I ripped open a fresh, extra large, waterproof bandage to put on his shoulder. This was the third bandage today, and the first two had been saturated each time I changed them. “He didn’t have this wound when we were there last week.”

”I’m supposed to work tomorrow,” Dawn was near tears as she spoke and her face was still a little green and pale from watching me work on the boil. “We’re starting testing soon and I can’t really miss any more days.”

”I know,” I said. “If I call first thing in the morning. I can take him if they have an opening before 10:00. Otherwise, I’ll have to schedule an appointment for the afternoon.

I didn’t want to alarm Drew or his mother, but I could tell something was not right with the wound because of how quickly it formed, as well as its depth and the amount of pus coming out. Fortunately, the doctor could see Drew as soon as I could drive him there. The doctor took one look at the wound and confirmed my suspicion that it was most likely a MRSA infection (Methycillin Resistant Staph Aureus), which typically can occur after prolonged hospitalization or antibiotic use. He cultured the wound (and the results came back two days later positive for MRSA) and he prescribed an antibiotic. He also told me to continue draining the boil twice per day until it was no longer producing pus (about 8 or 9 days later it finally stopped, and then about another week to heal fully). We also spent the next couple of days completely sanitizing the entire house, including stuffed animals, pillows, and a new shower curtain.

Saturday, May 12th — 1:30 PM

“Are you here in the place?” Drew texted me.

“Yes, I’m in the front lobby,” I answered back. Drew had traveled with the Copper Hills Concert Choir to the State Choir Festival at Libby Gardner Hall on the campus of the University of Utah. This was the final competition of the school year, and Drew was anxious to be part of the competition and be part of the choir by riding on the bus. In case there were any problems, I drove separately and told Drew I would be there if he needed me.

“Where are you guys? Everything OK?” I texted as I walked (a dangerous thing to do). I wandered through the crowd of multiple high school choir students nervously waiting in the hallways and lobbies throughout the building.

“We’re in the auditorium. Dad, I’m dehydrated and my pulse is slow — J**** checked it. What do you think?”

I had told him to take his water bottle and make sure he kept hydrated, but he kept insisting he would be OK without it and didn’t bring one. We have found dehydration to be one of his triggers for seizures. His body has a really hard time regulating temperature and he still doesn’t realize when he is thirsty, so he can overheat easily and has to be reminded to drink water.

“When the choir on stage finishes singing their song, go out into the hall and get a drink from the drinking fountain.” I had found the auditorium, but the doors were all locked from the lobby, so I wandered down the side hall and bumped into one of the judges who let me into the auditorium through a side door.

”And I haven’t eaten much today,” Drew added. “Yeah, that’s what S** and J**** said I should do. Yeah, that’s what I was going to do. Do you or should someone come with me? Or just you? Don’t you think someone should be with me? Are you in the auditorium?”

By this time, I had quickly moved into the closest seat between songs. ”I’m sitting in the auditorium a few rows directly behind you. I’ll follow you out,” I texted.

”You’re in the auditorium now?”

”Yes.”

”Oh,… S** told me I should take my suit jacket off. Yeah?”

”If you need to,” I replied.

”I did. Do you think I am over reacting?” Drew continued texting. “I don’t want a seizure in here. That would suck.”

”I know,” I texted back. “Just stay calm.”

”Okay, I’m taking deep breaths. Thank You.”

Luckily, he never did have a seizure. I helped him find a drinking fountain, and although he was struggling with dizziness and sweating profusely, he was determined to sing with the choir. We had to make a few trips to the drinking fountain and he powered through.

I followed the bus back to the school and waited in the parking lot as the choir members slowly trickled out of the bus. After several minutes, the stream of kids stopped and I started to get worried as the bus looked empty and there was no sign of Drew. I started to panic a little as I realized I did not actually stay with him and watch him get on the bus because I had to jog about a half mile to the parking garage where I had to park on the campus.

Finally, he emerged from the bus, talking over his shoulder to the driver as he started walking toward my car.

As he opened the door and sat down next to me, I asked, “What took so long? Is something the matter?”

”I lost the cuff links from this sleeve,” he pointed. “We looked and looked all over the bus, but couldn’t find them. I think they might have fallen off when I took my suit jacket off in the auditorium.”

”That’s too bad,” I said. “Do we need to get you some new ones?”

”I think I have an extra pair,” he said. “Besides, we only have one more performance this year, so I don’t think we need to buy new ones.”

”So, did you have fun?”

”It was OK,” Drew said rather glumly.

”What’s the matter? Did the choir not get a good score?”

”I think the choir did good. It’s just that nobody sat by me on the bus. They all walked past my seat and pretty much ignored me.”

”You sat by yourself both ways?”

”Yeah, … both ways.”

”I’m sorry, bud.”

We later found out that the choir did score a Superior rating and did very well. Unfortunately, Drew has struggled socially as he continues to recover from his brain injury. All of the students at school have been extremely nice, and he has loved every minute of choir and returning to his other classes, but many of the kids at school don’t know how to react and it is difficult to follow his line of thinking at times. He also can’t see or hear really well, especially in a group, so he misses a lot of the conversation and has a hard time keeping up with the witty jokes and quick banter of many of his peers. Granted, he is doing much better now cognitively than 6 months ago, and he physically looks great, but there is still quite a bit of healing to go neurologically.

Monday, May 14th — 2:20 PM

“If it’s OK with you, we will go ahead and start with some of the testing today,” the Neuropsychology doctor explained. We had already spent over an hour reviewing Drew’s medical history and slow progress of his recovery with the physician. “Then we will have you schedule a full day to return for the remainder of the tests.”

“A full day?” I asked.

“Yes, in total it will take about 8 hours of testing, but we will try to get a head start today,” he nodded.

Drew shrugged. “Fine by me. I’m ready.”

At our last appointment with his Neurology doctor, he felt that Drew had weaned off half of his medicines now and had recovered to the point that he was ready for a Neuropsychological consult wherein they would perform extensive testing and measures of Drew’s cognitive processing. The receptionist had warned me when I scheduled the appointment that it would likely take a couple of appointments, but I did not realize it would take so long as to last an entire day.

“Great,” the doctor said. “Let’s get started. Mom and Dad, if you don’t mind, I’ll show you back to the lobby if you could please wait there.”

“Oh, OK.” I was again surprised, but figured it would be easier for the testing and we would be close at hand if he had any seizures or problems.

“Just one last question,” the doctor paused. “What do you hope to get from the testing?”

“I want to be able to go on a mission,” Drew said, grinning from ear to ear.

“Yes,” I nodded, “and we hope the analysis can show us how to help Drew prepare for college. He hasn’t been able to submit any applications for college yet, and we know he will not be ready to live on his own for a while, but we are hoping to find out what we can do to help him achieve his goals and succeed.”

Drew and his brother playing a basketball arcade game head-to-head.

April 7, 2018 -- Provo Beach arcade

© Copyright 2018 Jeff, All rights Reserved. Written For: Jeffrey Olsen