Jeffrey Olsen

Saturday, May 19th, 2018 — 10:00 AM

My phone beeped as a text box appeared on the screen.

“Dad, we’re done now if you want to come and pick me up,” Drew texted me at the conclusion of his mandatory meeting for work.

“I’m already out front,” I texted back. “Watch for cars.”

“OK. Got ya’,” he replied. “One second….”

For two years prior to his illness, Drew worked at the Kearns Oquirrh Park Fitness Center, first as a sweeper cleaning and emptying trash cans, and then at the Front Desk helping with admissions and memberships. In fact, he worked a shift two days before being admitted to the hospital last June. We stayed in contact with his boss throughout his illness, and once Drew was cleared by his doctors, he was able to return to work earlier this month, but since he has not been medically cleared to drive yet, we will be taxiing him to and from his job for a while.

After a few moments, he emerged from the building and hopped in the car.

“So, how was it?” I asked.

”OK,” he said. “They talked about some policies and things. I remember some of it from when I worked there before.”

”Really? That’s great. Could you hear what they were saying?”

“Most of it, I think, but I was having a hard time hearing some of the stuff they were saying,” he explained. “I even sat near the front, but I might ask if I can attend the second session next week.”

“I’m sure they wouldn’t mind that, but they might only be able to pay you for attending one of the meetings,” I said. “Do you need Mom or me to attend with you and help take notes?”

“Nah, I should be good.”

“Did you tell your boss we got the medic alert bracelet ordered?”

“Yes.”

“Does it feel nice to be back to work?” I asked him.

“Of course,” he nodded. “I just wish they would let me work in the kiosk outside again.”

“In time they will,” I said, “but for now just focus on remembering everything, work where they need you, and be glad to have a job again.”

We are so grateful that Drew has been able to return to work. Although we live less than 15 minutes away, we still mapped out a detailed seizure plan with his boss and obtained a medical alert bracelet with his information in case he started having seizures while at work. The Fitness Center also had Drew attend a couple of training sessions to help remember some of his work duties with the plan to start slow and, as he can tolerate, then allow him to work up to longer shifts and work more days per week. He is thrilled to interact with the public and return to more “normal” activities.

Monday, May 21st, 2018 — 6:00 PM

“Go ahead and get his shots out of the fridge,” I said. “We’ll just have to give them a little early tonight before the choir concert begins.”

We adjusted his medication schedule to 6:45 AM and 6:45 PM so that he could participate in more activities after dinnertime without worrying about getting his shots and seizure meds. He gets two shots in the morning and two shots in the evening to help control his immune system from getting out of control again, and to help them sting less, we take them out of the refrigerator about 30 minutes ahead of time. As tonight was the last choir concert of the year (and of Drew’s high school career), we were excited and determined not to miss it. With any event or activity now, we always have to figure out a plan ahead of time and make arrangements for any medications or possible seizures.

“Well, where do you plan to do his shots?” his mother asked.

“I can either take him into the restroom once we get to the school, or if we do them in his stomach, we could do the shots in the car once we get to the school parking lot,” I explained.

The injections are subcutaneous, or just under the skin, so the needle is thin and not very long. Still, I have accidentally poked my fingers twice and they don’t tickle (we re-cap the syringes when we are out in public so that we can take them home to dispose in our sharps container). Plus, the medicine stings under the skin. The trickiest part is being able to squeeze some “chub” to give him the injections without going too deep.

“Let’s just do them in my stomach,” Drew said as he took another bite of dinner. His stomach is his least favorite injection site because he is so skinny and it is hard to find much subcutaneous tissue there for the shots, but his stomach is the easiest spot to access when we’re out in public places.

We were rushing to eat dinner before leaving for the high school as the choir students were asked to arrive for warm-ups by 6:30 PM. Usually we have to show up to the school concerts before that time anyway so that we can find some seats not already saved by other parents.

“So did you decide what you’re going to hold up during the Senior Song?” I asked.

Traditionally at the Spring Choir Concert each year, the seniors who will be graduating perform a song together one last time. At the conclusion of the song, the students step forward in small groups and hold up a T-shirt or sign or name tag that indicates where they plan to go after graduation. Many of them hold up sweatshirts or pennants with colleges names, while some hold up flags of countries if they will be serving an LDS mission, and so forth.

“So I guess I’ll hold up one of my ‘Drew Strong’ T-shirts,” Drew said.

“Why?” I asked. “I thought you were going to hold up a BYU shirt?”

“Mom and Erin said I shouldn’t because I haven’t been accepted yet,” he explained.

“Well, you have always planned to go there,” I offered, “and your grades and tests scores and extracurricular activities should be good enough.”

“He shouldn’t say he is going there until he’s been accepted,” Dawn countered. “The other kids have been accepted to their schools. Drew still has to apply.”

“But he’s been sick,” I said. “They’ll understand. He was on track before he got sick, and he’ll get there soon.”

“How do you know for sure?” Dawn asked. “Nobody knows.” Tears were welling up in her eyes.

“You’re right. I don’t know for sure….” I was measuring my words carefully as this had been a very sensitive topic for quite some time. “But we’ll keep working hard to get there,” I added, “won’t we?”

“Of course,” Drew nodded as I put my arm around his shoulders.

“Hopefully after you finish the cognitive testing next month, we’ll have a better idea when you should apply,” I said.

“That’s still not a guarantee that he’ll get in,” Dawn shook her head.

I thought for a moment, trying to find the right words.

“Yes…, I guess he shouldn’t infer that he’s already been accepted,” I admitted. “Who knows — maybe he’ll get cleared to serve a mission for a couple of years and then apply and end up somehwere else for college?”

We have tried so very hard to continue to encourage Drew and keep him motivated to do his rehab and work hard as he has watched his friends get accepted to college and missions and such.

“You’ve got lots of options, so yeah, maybe for now, the Drew Strong shirt best sums up your plans after high school. Who knows what your future holds?” I said. “We better get going or we’re going to be late.”

Drew has come a long way since his continuous seizures subsided and he woke from his coma. He still has some significant challenges ahead, but his progress truly is remarkable and nothing short of a miracle.

Thursday, May 24th, 2018 — 6:35 PM

“We picked the wrong side of the gym to sit on, Drew,” I said as we watched the students and parents seated at the tables on the opposite side of the room stand and walk toward the buffet line.

At last year’s choir banquet, some of the late-comers had a hard time finding a seat. For the year-end banquet this year, Drew and I arrived with plenty of time to spare so we could get a seat near the door so that we could discretely step into the hallway during the dinner to give him his shots and meds. This year, however, the banquet was held in the gymnasium, so there were plenty of tables and chairs. Still, it was nice to know we could exit the gym quickly and easily if there was a problem.

“Are you hungry?”

“No, I’m fine,” Drew said and then he turned his attention back to one of his friends sitting across the table. They were laughing and discussing humorous door approaches as future missionaries for the church.

Drew suddenly sat upright and leaned close to me.

“Dad, I’m having a hallucination,” he whispered in alarm.

“Right now?”

“Yes, it just started,” he said. “I’m hearing a song in my left ear.”

The last few weeks, he has fallen into a pattern of 3 or 4 days with seizures followed by 3 or 4 days without seizures. Because the seizures are not occuring every day and his medications have remained unchanged for a few weeks, we can only guess that the triggers have related more to his amount of sleep, fatigue, body temperature, or hydration. It took us a couple of weeks to realize, but nearly all of his seizures are preceded by visual or auditory hallucinations, which helps him prepare for them and prevent falling and injuring himself. However, despite several close calls, he had never yet suffered a seizure in public.

“Do you want to try and walk out to the hall or lay down?” I asked.

“No, I don’t think we have time now…. Oh, this sucks…,” he said as his eyes started rolling upward and to the side.

“OK, OK,” I said as I pulled him closer to me. “Take some deep breathes. Try closing your eyes, and lean on me.” He leaned forward onto the table, resting his head on his arm while he huddled close to me.

“Oh, Dad, ….”

Then the seizure kicked in. Although he had his face buried in the crook of his arm, I could still feel the muscles in his face violently jolting and twisting back and forth as he leaned against me.

“Breathe, Drew,” I whispered into his ear, which was starting to become tinged with blue. “You really need to take some deep breaths, Bud.”

The muscles in his neck and face spasmed rhythmically and repeatedly, gradually increasing in duration and intensity until his entire head began to twitch. I quickly slid my hand beneath his forehead to protect his face from slamming into the edge of the table as the seizure crescendoed and then, finally, began to wane after about 45 seconds more.

As the seizure subsided, I glanced around to see if anyone else had witnessed the seizure, but it became apparent only his friend across the table, along with his family, even realized a seizure had occured.

“You doing OK?” I asked him in his ear.

Drew just sat still with his head still resting on his forearm.

“Keep breathing,” I encouraged. “You’re doing great.”

Slowly he sat upright, glancing around the room to get his bearings. Finally, he turned to me and said, “Well…, that sucked.”

“Yes,” I nodded. “Pretty much.”

*****

The year-end choir banquet allows the students an opportunity to look back on the school year, the growth that they made, and the memories that they shared. Music letters are distributed to those who earned them. Gratitude is also shown to the teachers, pianists, advisors, and all those who helped make the year a success. Lastly, the choir teacher himself is able to give out some awards.

“You sure you’re not getting any awards or anything?” I asked Drew as we listened to the proceedings.

“I don’t think so,” he shook his head.

We cheered and applauded as each of the several awards and recognitions were handed out one by one until the choir teacher paused and looked around the room.

“The next student who earned an award this year struggled with his own health challenges this past year,” the choir teacher explained. “We have kind of mirrored each other as we have battled together to overcome our respective trials.”

Over the past year or so, the choir teacher has been fighting cancer and it is hard to believe that in the end, they both were able to do so much together this year in choir.

“I would like to present one of the ‘Director’s Awards,’” the choir teacher paused again as he glanced down at the certificate. “The ‘Choir Spirit Award’… goes to… Drew Olsen, who truly went “above and beyond the call of duty and [went] the extra mile” to return to choir this year.”

Applause rang throughout the gymnasium. Tears started springing to my eyes as I thought back on all the heartache and struggle from this past year. I looked over at Drew, and he was looking down at his phone.

“Hey, Bud, he just called your name,” I said.

“What?” Drew looked up, and then looked around.

“He just said your name,” I nodded toward the podium.

“He did?”

“Yes,” I smiled. “Get up there.”

“Oh,” Drew said as he stood and quickly walked to the front of the banquet. He smiled as the realization sunk in that he did earn an award after all.

Tuesday, May 29th, 2018 —  7:30 PM

“Why did they put that picture in?” Drew asked. He held up his yearbook and pointed at one of the pictures from Homecoming with his girlfriend at the time.

“They asked me if it would be OK?” I explained. “I told them they could use the picture.”

“Ugh,” he said. “I look horrible.”

“No you don’t,” his mother said. “It’s a very nice picture.”

“But I’ve got my feeding tube hanging out of my nose,” he said. “And my eyes are messed up.”

“They don’t look that bad,” I said. “Your mother’s right — it’s a nice picture.”

Today the high school students received their yearbooks and I had honestly forgotten about the Homecoming picture. Drew did have to go into the school twice to get his Senior picture taken. His eyes were really misaligned for the first picture, and even with editing, we all agreed to have him re-take the picture after a few more weeks of recovery and weaning of seizure medications. On the last day of re-takes, I took Drew in and he sat for the second attempt at his Senior picture. They only took one picture, and we didn’t get to see how it turned out until the yearbook today. Luckily, it turned out much better than the first attempt from earlier in his recovery.

Drew returned to the couch to continue scouring the many comments and pictures from the school year.

“Is he reading everything OK?” I asked his mother.

“Yes,” she said. “He’s been asking questions about some of the pictures, but otherwise he’s loved it. That’s pretty much all he’s  done since he got home from school is sit and read.”

“Well I’m glad he took a break for dinner,” I said.

“Uh, oh,” Drew looked up in alarm.

“What?” his mother asked.

“There’s a seizure coming,” Drew said.

“Are you sure?” I asked.

Drew just shook his head as he quickly laid down on the couch and closed his eyes.

I turned to his mother, “Did he take his evening meds on time?”

Up until now, Drew never had any seizures after he took his evening medications with dinner. We would always breathe a little sigh of relief once he received the evening seizure medicines, so I was confused that he would have a seizure now.

“Yes,” Dawn said. “He took his medicines just fine, and no other seizures today.”

For the next several minutes, we watched helplessly as the seizure started and ran its course. There really is not much you can do to stop a seizure once it starts — we simply keep him from falling and watch his oxygen saturation, encouraging him to breathe as soon as he regains control of his muscles. Although we are watching the clock and standing by with his rescue medicine just in case the seizure doesn’t stop.

“Now why would he have a seizure this late in the day?”  I puzzled aloud as Drew rested.

“He’s caught up on his water today, but he’s still not sleeping very well at night, so he’s probably tired,” Dawn offered.

“Yes, I’m sure that’s part of it,” I said. “But, he hasn’t slept well at night for a few weeks, and today was the first time he ever had a seizure after his evening medicines.”

“The only other thing I can think of is that he has been studying that yearbook non-stop ever since he got home from school,” his mother stated. “I thought the dinner break would be enough, but I guess it wasn’t?”

He really had been ‘studying’ the yearbook simply because of his vision. He had to hold the book up close to his face to read the small print, and then at varying angles while turning his head side to side, in order to minimize his double vision and bouncing eyes.

“How long in total do you think he’s been sitting there reading?” I asked.

“I would guess at least three hours,” Dawn said. “Maybe more….”

“Sounds like we better get him to take more breaks and not strain for so long,” I said.

Thursday, May 31st, 2018 — 3:35 PM

“I need to supervise my son and his medical condition,” I said to the security guard and pointed at Drew. We were standing near the front of the graduation line so that Drew could participate with the choir as part of the graduation ceremony and now they were finally letting the students enter the Maverick Center.

The guard nodded as he looked into the small lunchbox that held Drew’s evening seizure medications and shots, along with two small ice blocks. Once the guard nodded his satisfaction, he motioned for me to enter the arena and I jogged to catch back up to Drew and the choir.

“What was that all about?” Drew asked me as I strode up beside him.

“He was just doing his job” I said.

Security was actually heightened due to some threats made earlier in the week, but luckily nothing out of the ordinary happened during the graduation ceremony.

“That was nice of them to let you sing with the Madrigals for graduation,” I said. “Did you ask them to do it?”

“No,” Drew shook his head and shrugged. “They just said I could sing with them.”

“Are you glad to sing with the Madrigals one last time?” I asked.

“Yes, of course,” Drew said, “But I will probably have to mouth a lot of the words because I didn’t get to practice much with them — pretty much just yesterday and today.”

“Well, that’s OK,” I replied. “Just do your best and be grateful.”

“I am,” Drew smiled.

“Listen,” I pulled him aside as the choir students made their way to the podium at the front of the arena. “When it is time for your shots and medicines, I’ll be sitting right over there on the first row.”

The arena is normally used to play hockey, and I pointed to the row of chairs immediately behind what would normally be the team bench and penalty box. Drew peered down my arm to where I was pointing and then nodded.

“You need to stand and make your way over to me, and I will jump down and take you into the locker room,” I pointed. The team bench area opened to a short hallway that led to the hockey players’ locker room.

“OK,” he nodded.

“All right,” I said. “I’ll be right there if you need anything.”

“OK,” he nodded again.

I pulled him close and hugged him. “Now go have fun and celebrate. You made it.”

“Yup, I will,” he said as he nodded one more time, and then he trotted forward to rejoin his choir mates.

Drew’s High School Graduation

 

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

November 7th, 2017 — (25 days since leaving the hospital).

On the FIRES Group Facebook page yesterday, an obituary was posted of a 16-year-old boy in Minnesota who didn’t make it out of the ICU. He fought his seizures for 8 weeks before succumbing. Life is so fragile. May the Lord bless his family.

August 7th, 2017 — Drew was having nearly constant seizures, including a myoclonic seizure involving his right leg and torso that lasted for more than 2 hours. He was barely moving his right elbow and hand, mostly when he would cough, and he was unable to follow any commands or really interact. The plasmapharesis had finished two days earlier seemingly without any improvement, so after another Care Conference, Anakinra was started in the afternoon.

November 7th, 2017 — three months later.

A special thank you to the Theater Department at Copper Hills High School — to all the cast, crew, and Admin — for working Drew into the Musical this past week. He has wished to be in the musical pretty much since he woke up from his coma and seizures, and over this past week, Drew has attended rehearsals to try and increase his endurance and strength. After his first rehearsal last Thursday, he was only able to last for about two hours and then he came home and went directly to the couch and fell asleep for an hour.

Unfortunately, he was not able to adequately learn any of the songs in time and his strength and balance will not allow him to do much dancing, but at least he will get to be on stage for a few scenes this coming November 10th, 11th, and 13th. He spent weeks with his mother and the Music Therapy at Primary Children’s, but his brain still cannot connect the words to the notes and rhythm very well. He may not have been able to try out for one of the lead roles, but we are so blessed to see Drew return to one of his passions, even in a limited role. However, considering he was in a coma with uncontrolled seizures three months ago, we are extremely grateful.

Sensory Processing Disorder

Drew’s biggest challenges continue to be his brain’s ability to process the incoming signals from all of his senses. We visited the eye doctor, and they were able to measure his vision is still 20/20, but his brain struggles to see what his eyes are seeing. Same with his ears, balance, and sense of touch/hot/pain. At times, he will dry his hands repeatedly because he thinks they feel wet, but in reality, they are dry but cold. When his brain gets tired, it has a more difficult time processing the incoming signals. This is especially apparent when he tries to recognize and remember people’s names. As a result, he still has a hard time watching TV and cannot listen or recognize any songs on his phone or the radio, but hopefully in time these will all continue to improve.

Rehab Report

For the initial two weeks he was home from the hospital, Drew spent most of the day in his wheelchair. Gradually, he has built his strength and improved his balance to the point where he has not used his wheelchair in nearly two weeks. He is still unsteady and needs to have someone to lean on, but he continues to make gains. His memory and cognition have improved since the hospital, and he has been able to even remember how to do some algebra, but not yet ready for AP calculus. He started home school this week with the hopes of being able to return to school by January if his doctors and teachers feel he is ready.

Sedation

The doctors also continue to slowly decrease some of Drew’s seizure medicines so that he is not so sedated and sleepy. Drew left the hospital on 6 seizure medicines and by the end of this week he will be down to 5 medicines. The first week home from the hospital, he was so sedated it took forever to do anything and everything and we spent most of the day just trying to get simple tasks finished. Now he still takes about an hour-long nap after his morning medicines kick in, but then he plugs through the rest of the day as best he can. The doctors hope to get him down to 3 or fewer seizure medicines so long as the seizures remain controlled, but they plan to go very, very slowly.

My apologies that this is more telling than showing and the update is brief. The last few weeks have been extremely busy and exhausting as we transition to home and help Drew continue to get strong(er). Again, we are grateful for all the prayers and support. With time, hopefully his brain will continue to heal and seizures will stay away so that he can return to school and choir and basketball and future musicals and plays. Until the next update, thank you and perhaps we will see you this weekend at the Copper Hills High School production of “My Fair Lady.”

 

The Chronic Phase: Home Again

The Social Worker at Primary Children’s Hospital told us that writing in a journal can be therapeutic. Even more, perhaps sharing our journey these past few weeks may help other families with children who suffer from this rare, devastating syndrome (F.I.R.E.S. = Febrile Infection-Related Epileptic Syndrome) or other chronic conditions.

The second-shortest verse in the scriptures is found in Luke 17:32, where the Savior cautions, “Remember Lot’s wife.” Many people may struggle to remember this story, but just as the Savior instructed, we would do well to refresh our memories. Lot and his family lived in Sodom and Gomorrah during the time when wickedness abounded to the point that the Lord told Lot and his family to flee because those cities were about to be destroyed. “Escape for thy life,” the Lord said, “look not behind thee . . . ; escape to the mountain, lest thou be consumed” (Genesis 19:17).

During a January 2009 BYU deviotional, Elder Jeffrey R. Holland explained what happened next: “With less than immediate obedience and more than a little negotiation, Lot and his family ultimately did leave town, but just in the nick of time. The scriptures tell us what happened at daybreak the morning following their escape:

The Lord rained upon Sodom and upon Gomorrah brimstone and fire from the Lord out of heaven;

And he overthrew those cities. [Genesis 19:24–25]

… Surely, surely, with the Lord’s counsel “look not behind thee” ringing clearly in her ears, Lot’s wife, the record says, “looked back,” and she was turned into a pillar of salt.

So, if history is this important—and it surely is—what did Lot’s wife do that was so wrong?”

Rehab Team, Day #30 (Saturday, October 7th)

100 days since onset.

3:00 PM: It was a struggle to keep him awake for all of his therapies, but he got them done by 12:30 so we could leave on our Ride Pass. Seems like he has been getting a little sleepier lately and not sure why because none of his seizure medicines have changed.

This afternoon, we ventured out to the store for a new pair of shoes. The high tops we bought, and that Drew loved so much in ICU, were actually a little big so that we could get them on his feet easier to support his ankles and feet while lying in bed. Now he needs a pair better suited for walking. We just had to make sure they were blue or orange Nike shoes.

After shoe shopping, we went to Grandma Langford’s house for dinner. Drew loved it as he was no longer on the Ketogenic diet and could eat the sloppy joes and vegetables along with everyone else. After dinner, we returned to the hospital just after shift change. We helped get Drew ready for bed and settled in with his older sister staying with him at the hospital one last Saturday in the hospital, and then Dawn and I returned home with his younger sister.

11:30 PM: I had turned off the bedroom light and collapsed onto the bed, exhausted from the busy day, but as I lay there in the dark, I could hear Dawn crying.

”What is the matter?” I whispered as I tried to comfort her, but she continued to cry.

”Drew will be home in a week,” I said. “So why are you crying?”

It took her a few moments to answer, but finally she said, “Because he is missing out on so much…. I just don’t know if we will ever get our ‘old Drew’ back.”

”At least we have him with us still,” I reminded her, but that answer didn’t seem to be enough any more. I didn’t know what else to say and so I held her as she cried on my shoulder until she fell asleep.

Rehab Team, Day #31 (Sunday, October 8th)

101 days since onset.

1:00 PM: Sometimes the “what if” questions hit you out of nowhere. Usually for me, it is when I see youth who are about Drew’s age doing things that Drew used to do but cannot yet. As I sat in church today and listened to the 16- and 17-year-old Priests prepare and bless the Sacrament, tears came to my eyes as I sat and wondered how long it will be until Drew will be able to do that again? What if he will never be able to do that again? Right now, he can’t even stand without a lot of help, let alone kneel or assist with the ordinance. I try not to think about what used to be, but I still have a lot of worries about the future and when life will return to some sense of normalcy again.

During his BYU Devotional, Elder Holland explained: “Apparently what was wrong with Lot’s wife was that she wasn’t just looking back; in her heart she wanted to go back. It would appear that even before they were past the city limits, she was already missing what Sodom and Gomorrah had offered her…. So it isn’t just that she looked back; she looked back longingly. In short, her attachment to the past outweighed her confidence in the future. That, apparently, was at least part of her sin.”

I find that the more I look back to the past, looking for the ‘old Drew,’ the more miserable I become. I look back to what Drew was like before he became sick, and how much different he and our family has become now, and it rips my heart out. I wish we could go back in time to the way things used to be, but apparently the Lord has something better in store for our family, and for Drew. I suppose that if the Savior were here today, he might reassure me and my family by telling us to also “remember Lot’s wife.”

7:00 PM: Drew continues to be pretty difficult to wake up in the morning. He slept in until 8:00 AM, but then he had to get up and eat breakfast and take his medicines. However, he fell back asleep by 10:00 AM and missed church on his last Sunday at the hospital. In the afternoon, we went to Grandma Olsen’s for dinner and family birthdays. We decided not to take Drew to our house this weekend because he would not understand emotionally or cognitively about returning to the hospital. Grandma’s house provided plenty of practice for going home and this time, we even practiced helping Drew empty his bladder in a regular bathroom. After all was said and done, Drew did really well with his Ride Passes this weekend and we felt pretty good about taking him home next week.

Rehab Team, Day #32 (Monday, October 9th)

102 days since onset.

Noon: Drew slept good all night and actually had a hard time waking up This morning — it seems like this happens every morning, but each day has been progressively harder. Today, we chalked up his sleepiness to Drew working hard on his Ride Passes over the weekend. He got most of his egg McMuffin eaten before OT came. Good sessions in PT and OT this morning before he fell back asleep by 10:30.

5:30 PM: Drew just finished a hearing test with the Audiology Department and the good news is that his hearing sensitivity is normal — his inner ear and nerves are not damaged and his hearing is normal. The bad news is that he does have Auditory Processing Disorder, which means that his brain is having a hard time making sense of what he is hearing. This explains a lot why he struggles to hear directions or to listen to music and that the songs all sound the same. The Audiologist said this is common with TBI patients and is very likely the same problem with what his eyes, touch, and balance are struggling with also. The nerves and peripheral nervous system are all fine, but everything is getting jumbled in his brain either due to damage from the illness or the seizures. We are hopeful that in time his brain will continue to heal and improve with the rehab.

7:30 PM: Tonight for dinner, Drew ate his first real pizza since coming out of his coma. He didn’t want to order the pizza from the hospital menu because he was worried it would be the Ketogenic variety that consisted simply of pepperoni with a little cheese melted on top. So tonight, Grandma and Grandpa Olsen brought in a couple of pizzas and garlic bread and we all ate together. Drew loved it and ate two slices before it was time to go take his shower.

Rehab Team, Day #33 (Tuesday, October 10th)

103 days since onset.

10:30 AM: Drew slept well last night, but was a little sleepy waking up this morning. Good OT session this morning as he got dressed and brushed his teeth in less than 20 minutes. For PT he practiced stairs and walking on the treadmill, as well as walking in the hallway. We will see what the Rehab Team says after the weekly team meeting this afternoon, but it looks like we will be getting everything set up still to go home on Friday. We finally figured out the best way to help Drew take all of his medicines. The pills had to be swallowed one by one and took 40 minutes. Crushing the pills into liquids were a little faster, but the taste was horrible for some of them and made Drew’s stomach upset. So last night and this morning, Drew did really well swallowing his pills with a little yogurt or shake and it took less than 10 minutes for him to swallow all of his many pills. Also, as long as he keeps hitting his fluid target, Drew’s feeding tube should come out before he leaves on Friday.

1:00 PM: After the Rehab Team meeting, the doctors realized that Drew had not had to receive anything through his feeding tube since last Friday, so they said he could go ahead and get it pulled out today. Big celebration as his last tube was removed today.

Rehab Team, Day #34 (Wednesday, October 11th)

104 days since onset.

10:00 AM: Drew was so sleepy today that I could barely get him awake before OT came to work with him at 8:00 AM. Typically in the morning, I will order his breakfast at 7:00 AM. At 7:15 AM I will wake Drew up and get him into the wheelchair to eat, but some mornings it takes 15 or 20 minutes for him to wake up. Today, he didn’t have time to touch his breakfast before OT arrived at 8:00 AM, and then he fell back asleep again before lunchtime. The doctors said they will run some labs and make sure there is not something wrong to explain his persistent and progressively worsening sleepiness. Since he came off of the Ketogenic diet, the doctors have been slowly tapering down his Anakinra dose, but it doesn’t necessarily cause sleepiness, and none of his other seizure medicines have changed.

10:45 AM: “Why is Drew so sleepy?” Dawn asked the doctors in the room. “He wasn’t this sleepy a week ago.”

“We’re not sure,” the doctor said. “He could be working harder with therapy or just needing more rest breaks.”

“He can barely get through his therapy sessions,” I said. “This morning he fell asleep in the middle of OT while putting on one of his socks. He slept through lunch and afternoon therapies yesterday, so I doubt he is working harder in therapy because he is barely getting any therapy because he is so groggy.”

“This is not my Drew,” Dawn said as Drew slept soundly in his bed despite our discussion.

“Do you think he is sedated?” the doctor asked.

Dawn paused, and then answered, “Yes.”

“OK,” the doctor said as she turned to the resident. “Let’s check a phenobarbital trough tonight just before he gets his dose in the evening. We can draw the rest of his discharge labwork tonight at the same time instead of waiting until the morning.”

After the doctors left, I spoke to Dawn, “This can’t be due to the ‘brain injury’ because he is so much worse now than he was last week and he seems to be getting worse every day. A brain injury would be more constant, but even during the day, there are times he is so alert and talkative, and then other times his speech is slurred and he can’t keep his eyes open.”

9:00 PM: Lots of “lasts” this week as we march toward going home the end of the week. Tonight was his last shower in the hospital. His next scheduled shower on Friday will be at home. We also started packing up some of his belongings and taking a few things home.

10:00 PM: Drew’s nurse just came in and said the Blood Count and all of Drew’s lab results tonight came back normal, including the White Blood Cells. However, his Phenobarbital level was 51 and his target range is 20 to 40. They wanted to draw his level right before he got his Phenobarbital dose tonight because that is when it should be at its lowest level, and even still, it looks like it has been running high, which would explain his sleepiness the last several days. We’ll see what adjustments they make tomorrow.

Rehab Team, Day #35 (Thursday, October 12th)

105 days since onset.

10:00 AM: Drew has not been able to wake up this morning. He will open his eyes and even say a few words, and then he keeps falling back asleep. So he has missed his therapies and breakfast and has not received his medicines yet. The doctors came in just now and said if he doesn’t wake up by Noon and eat and take his medicines, they will have to put the feeding tube back in and he won’t be able to leave the hospital tomorrow. All of his labs have been normal except his phenobarbital, which is high, so they are trying to get Neurology to lower his seizure medicines in addition to lowering the phenobarbital, but that could also keep him in the hospital longer.

11:00 AM: We finally got him awake enough to get into his wheelchair and take his seizure medicines. He slept for 13 and a half hours and is still sleepy, but he was able to eat and drink a little bit, so we avoided the return of the feeding tube, at least for now.

3:00 PM: The Neurology resident came by a couple of hours ago and said they would likely hold his phenobarbital tonight, but when the whole Neurology Team came by just now, the Attending doctor said they would still give him his dose, but they would decrease it from 250 mg to 200 mg. They also called our Neurology doctor who will be working with us when we leave the hospital and he very familiar with Drew and he told them to start weaning one of his seizure medicines tonight. He plans to start slowly taking away some of the seizure medicines that are the most sedating. Drew hasn’t had a seizure since September 10th, so his seizure control would appear to be good, but not if it means he sleeps all the time and can’t walk or function.

5:30 PM: There was a lot of talk this afternoon about whether we would be leaving the hospital tomorrow or not. We could have easily kept him longer in the hospital, but he would be transferred back to the medical service and not be in the Rehab Unit any more. Everything is stable medically except just his phenobarbital level, and possibly his other seizure medicines, which the doctors plan to adjust gradually. If he stays in the hospital, he wouldn’t be getting the therapy any more and it would be pretty boring sitting around waiting for the phenobarbital level to adjust. We felt we could still take him home and get him to eat and drink and take his pills, sleepy or not, and if we have trouble we can bring him back to the hospital. Also, since he would not be on Rehab and getting therapy, we decided to proceed with taking him home tomorrow after he completes the morning therapy and eats lunch.

8:15 PM: “Congratulations,” the ICU charge nurse said to us.

“We just wanted to thank all of you for your help to get us here,” I said.

Drew had no idea who any of the doctors or nurses were in the ICU, but he waved and smiled and said, “thank you.”

We took a bowl of Halloween candy and a Thank You note to the ICU (we have another one for the Neuro Unit tomorrow). Several of the staff had asked us to come back through the ICU before he went home so they could see him awake. There were only a handful of nurses there tonight who had worked with him, but a couple of them hugged us and there were tears. The biggest shock for them was to hear Drew talk — they never heard him talk while he was in the ICU. Sometimes we forget how far he has come in such little time.

11:30 PM: Last night in the hospital and I am struggling to fall asleep. I won’t miss the futon with the fold-out mattress that is too soft and old — I don’t think my back would have lasted much longer. Drew sleeps soundly for now with his pulse oximeter monitor glowing above his bed. I still leave one of the lights on at night so Drew can see me sleeping in his room and not freak out. The thought of leaving tomorrow brings both excitement and anxiety. I feel like I am leaving the hospital just as much as Drew because I have basically lived here with Drew for the past 15 weeks. It will be nice to be home again with family and friends and Drew with us.

Home, Day #1 (Friday, October 13th)

106 days since onset.

11:30 AM: After the pharmacy dropped off his seizures medicines for home, I started reading through some of the paperwork talking about the side effects of the medicines, and it made me wonder how much of his deficits are due to the brain injury and Sensory Processing Disorder, and how much are just due to the seizure medicines? Some of the side effects of the seizure medicines include sleepiness (all of them cause this), blurred vision, difficulty walking, difficulty with coordination, slurred speech, headaches, and difficulty concentrating, to name a few. We are taking home 11 prescription medicines, but technically only 6 of them are for seizures. With that many medicines and on such high doses, it is no wonder he is so sleepy and struggling to function. We certainly don’t want the seizures back, but hopefully we can peel back some of these seizure medicines and see if Drew can actually function and walk and do more than sleep.

2:40 PM: Good bye, Primary Children’s Hospital. The morning was a steady stream of doctors, nurses, and his last therapy sessions. The Wound Team stopped by and said that his tracheostomy hole is essentially closed, but one more week with a bandage and the skin should be scarred over as well. Drew’s bedsore is still two or three weeks away from healing, so we were given supplies and trained on caring for it. Plus we will need to continue to reposition Drew every 2 to 3 hours at night since he does not toss or turn or move himself yet while he sleeps. He is still a little groggy this morning, but not as bad as yesterday. Supplies were delivered, prescription medications were obtained, training was finished, and the paperwork finally completed about 2:00, but we had to wait a little bit longer for a flu shot. The Rheumatology doctor strongly recommended he get a flu shot with him on the Anakinra and to help him stay healthier back in the non-hospital world. Once that was finished, we were on our way home.

9:30 PM: What a nice afternoon. The house was cleaned and decorated very nicely, with yellow ribbons and balloons and signs. Drew took a while to remember that we remodeled the home. His brother and sisters helped him look around the house, but he continued to be groggy and sedated and we struggled to get him to drink enough water. Drew wanted to play video games with his brother (Call of Duty), but he had a hard time remembering how to play and he couldn’t see the screen very well or understand what was happening. Hopefully the phenobarbital level will adjust back down soon so he can eat and drink and function. However, it was nice to eat as a family around the kitchen table again and be home.

Home, Day #2 (Saturday, October 14th)

107 days since onset.

8:30 AM: “Good morning, Drew,” his mother said as we started waking him up.

“Good morning,” Drew said groggily with his eyes half-open.

“Drew, do you know where you are?” his mother asked.

“Yes,” Drew replied. “I’m at Primary Children’s Hospital.”

“No you’re not,” Dawn answered.

Drew opened his right eye wide and started looking around his room. I opened the blinds on his window and rays from the rising sun blazed into the room, bouncing off his walls and furniture. Slowly, he realized he was not at the hospital.

“Am I home?” he asked as he rubbed his eyes.

“Yes, Drew, you’re home,” Dawn said.

Drew raised his fists toward the sky and said, “Yessssss!”

Elder Holland continued: “I plead with you not to dwell on days now gone, nor to yearn vainly for yesterdays, however good those yesterdays may have been. The past is to be learned from but not lived in. We look back to claim the embers from glowing experiences but not the ashes. And when we have learned what we need to learn and have brought with us the best that we have experienced, then we look ahead, we remember that faith is always pointed toward the future. Faith always has to do with blessings and truths and events that will yet be efficacious in our lives. So a more theological way to talk about Lot’s wife is to say that she did not have faith. She doubted the Lord’s ability to give her something better than she already had. Apparently she thought—fatally, as it turned out—that nothing that lay ahead could possibly be as good as those moments she was leaving behind.”

…To all such of every generation, I call out, “Remember Lot’s wife.” Faith is for the future. Faith builds on the past but never longs to stay there. Faith trusts that God has great things in store for each of us and that Christ truly is the “high priest of good things to come.”

I do not know what the Lord has in store for Drew and for our family, but surely He knows what is best for us. It is so very difficult to not dwell on what has been lost, and what should have been, but I hope that we can have the faith to trust in His grand plan. This has been quite a journey for our family, and we are so very appreciative for all the love and prayers and support — the kind acts of service, generous donations, and moral and emotional words of love. You all have helped in some small way and we will never be able to repay everyone, but I suppose in much the same way as Lot’s wife, we will just have to try to pay it forward as we move headlong into the future. I may not have time for weekly updates, but I will post an update from time to time as Drew continues to rehab.

The Chronic Phase: The Rehab Homestretch

The Social Worker at Primary Children’s Hospital told us that writing in a journal can be therapeutic. Even more, perhaps sharing our journey these past few weeks may help other families with children who suffer from this rare, devastating syndrome (F.I.R.E.S. = Febrile Infection-Related Epileptic Syndrome) or other chronic conditions.

I stopped including his seizure count because he hasn’t had any seizures since September 10th. His seizure control has been very good, but at the same time, the seizure medicines seem to be making him more sleepy.

Rehab Team, Day #23 (Saturday, September 30th)

93 days since onset.

5:30 PM: Drew was able to get all of his therapies finished by lunchtime, so in the afternoon, we went to Grandma Olsen’s on his Ride Pass today. We worked on stairs into the house, sitting balance, walking, and visiting with family. Because he is still on the Ketogenic diet, we had to pack his afternoon snack and we planned to return to the hospital by dinnertime.

Rehab Team, Day #24 (Sunday, October 1st)

94 days since onset.

7:30 PM: Drew slept through most of the morning session of General Conference, but that was OK because we wanted him to rest up for another Ride Pass to Grandma Langford’s house in the afternoon. After he finished lunch at the hospital, we checked Drew out and drove to Grandma’s. Once we arrived, we went straight to the backyard and Drew tried shooting some baskets on the basketball court and he walked around a little bit on the grass. He was convinced he could do it by himself and kept trying to run or get up on his own but he nearly fell multiple times and we had to sit by him and watch him close. Once the afternoon session of General Conference started, we went inside for the rest of the time. He was able to pet the cat and some bunnies. He visited with many of his cousins, and his girlfriend even came over for a little while. The entire stay went well right up until he tried to eat dinner (which we brought from the hospital) and then there was too much commotion and distraction and he struggled to eat. He was also very tired and started to become agitated just before we left as he started yelling and saying mean things to people. We had to leave to return to the hospital and he could not hear what we were saying very well and he couldn’t understand why we had to leave back to the hospital. Otherwise, it was a good visit.

Rehab Team, Day #25 (Monday, October 2nd)

95 days since onset.

11:30 AM: Drew talks a lot in his sleep, and I don’t think he did prior to getting sick. Sometimes you can tell what he is dreaming about — a couple of nights ago, he dreamt he was at the Lagoon amusement park with some friends. Last night he was talking to his brother and friends in his sleep. This morning when the nurses came to empty his bladder at 6:00 AM, he said, “Oh, that’s my favorite color.”

First day on a normal diet!!! Breakfast ended up being a little late because the doctor had to write the order first to advance to the normal diet, and then he actually got to choose what he wanted for breakfast from the menu. When the kitchen staff brought his waffles and sausage, Drew said, “I am so happy right now.” No more heavy-cream smoothies or chunks of butter and fat to eat!

The last several days, it seems Drew has been getting more sleepy after taking his morning seizure medicines at 8:00 AM. The medicines take about 40 minutes to kick in and then he becomes super sleepy and fell asleep multiple times during his morning therapy sessions. So this morning, the doctors switched his medications to 9:00 AM and then scheduled OT at 8:00 and PT at 8:30, so he did awesome in his morning therapies before getting sleepy from his medicines. Much better therapy sessions today.

In fact, during the afternoon OT session, they played a game of Blokus and he tied the therapist. We have noticed that Drew can still read, reason, and remember, but it takes him longer to do things. It seems as though the old Drew is returning, but his brain is stuck in first or second gear and he cannot shift and go faster yet. He can do a lot of things, but it just takes longer for him to process and think through things, and he definitely cannot be distracted or he gets sidetracked really easily. Considering how far he has come this past several weeks, we are happy with his progress and hope it will continue over the next several weeks.

Rehab Team, Day #26 (Tuesday, October 3rd)

96 days since onset.

The doctors changed out his air mattress/dolphin bed yesterday afternoon to just a regular bed, and last night and this morning, he could sit up without help (standing still needs help for his balance). He talked a lot in his sleep last night again, and then this morning, he was dreaming we were at church and he thought he was in a white shirt and tie. He was asking me if we were still in the Sycamores 4th Ward and if we still met at the “small Stake building.” He then started asking me if they were building more in the Sycamores and if they might build a bigger Stake building. He kind of remembers things, but I was trying to keep him going on his breakfast. He ran out of time to finish his French toast this morning (he ate about 3/4 of it).

Usually, every Tuesday is the Rehab Team Conference where they discuss the patients’ progress and plan, however, due to some mandatory computer training, the Team Conference was pushed to tomorrow. Still, every Monday and Tuesday, the nurses and therapists have to assess how Drew is progressing with some of his tasks, such as his shower last night, and then this morning they had him try to negotiate a flight of real stairs. He actually did surprisingly well, but he needed to be verbally cued to look down at where he was putting his feet. He has the strength to do the stairs, but his balance is horrible and once he saw me taking pictures, he had a hard time focusing on the stairs and he needed more cues. He really has a hard time getting distracted whether it’s eating or therapy or anything and he really can’t do two things at the same time yet.

Rehab Team, Day #27 (Wednesday, October 4th)

97 days since onset.

Drew seems to be doing much better at night now, at least with staying asleep. His oxygen kept dropping last night as the nurses would try to turn it off, so finally the nurses left him on some supplemental oxygen (only 1/2 liter) and we may need to have him wear some oxygen at night when he goes home. He had pancakes and sausage for breakfast and did pretty good eating in time before OT started at 8:00 AM, but he really gets side-tracked easily and he barely got dressed and teeth brushed in time for PT at 8:30 AM. Then in PT, he was being kind of a stinker and kept saying he was “tired” and not listening to the directions of the PT. They are trying to work on his core strength and balance with crawling and kneeling exercises.

So we just finished meeting with Drew’s Rehab doctor. He is scheduled to discharge from the hospital on Friday, October 13th. We have a pass for this weekend and can take him home so long as we think he will be OK to return to the hospital (not sure). We have a lot to coordinate once we leave the hospital as he will need to follow-up with the following teams of doctors: Neurology, Rehab, Rheumatology, possibly ENT, Wound, Urology, Opthamology, and his Primary Care doctor, plus he will start home school and have his continued therapies which we are hoping the insurance will cover through Rehab Without Walls. They are going to purchase him a wheelchair as he will likely require it for several months. The doctors are not sure if Drew will be ready for BYU by next year, but hopefully in a year or two depending on his recovery and progress. Lastly, they hope they can remove his feeding tube before he leaves, but he has to be able to swallow all of his medicines/pills and consistently eat enough calories and drink enough fluids. Also, Dawn and I need to get trained on how to care for all of Drew’s continued medical needs, such as crushing his pills, caring for his tracheostomy fistula and his bed sore, and helping him empty his bladder. Needless to say, we have a lot of work to do before we leave, but we are all excited and looking forward to Friday, October 13th.

9:30 PM: Today the speech therapist and nurses started working with Drew on swallowing his pills instead of crushing and administering them through his feeding tube. In order to make sure he is swallowing the pills without chewing them, they gave him the pills one by one along with water or yogurt to help them go down better. Unfortunately, because of how many pills he has to take, it took him 40 minutes this morning to take his pills. Tonight, it took him nearly 45 minutes to swallow his 17 pills. The nurse is going to try and change some to liquid tomorrow and figure out how to speed up the process.

Rehab Team, Day #28 (Thursday, October 5th)

98 days since onset.

He did well this morning but seemed a little sleepy the last 2 days. I think he has gone to bed a little later and not had very long naps in the daytime, so he had a harder time waking up this morning. They mixed some of his pills into a liquid so he only had to swallow 4 pills and his morning medicines went a ton quicker. OT is trying to get him to speed up with his dressing and teeth brushing, but it still took him 22 minutes today. PT worked on crawling and core strength in the morning.

2:30 PM: Dawn sent me a text to call her as soon as I could, so I stepped out of my meeting at work and called her back.

”I just wanted to let you know,” she told me, “that we can’t wake Drew up this afternoon.”

”What?” I asked.

“He fell asleep about 10:00 this morning after getting his morning medicines, like he usually does,” she explained. “But we couldn’t get him to wake up for lunch and we still can’t get him to wake up now. He has missed all of his afternoon therapy sessions.”

“Do they know why?” I asked.

”The doctors have ordered some blood work and tests to see if they can find out what happened.”

”Is he having seizures again?” I asked.

”No, the doctors and nurses have checked several times and he is not having seizures. In fact, they can wake him up a little but and he will talk to us for a minute, but then he falls right back to sleep.”

9:00 PM: Drew finally woke up about 3:45 PM and acted like he usually does. He was able to wake up for a strawberry shake, Music Therapy at 4:30, and then the usual dinner and evening activities. When I arrived at the hospital, many of the labs had already come back and everything was normal. No signs of any infections. His Phenobarbital level was within his target range. The doctors had no idea what caused the long nap. It was scary, but perhaps he was just tired from all the hard work he has been doing?

Tonight his girlfriend came up to the hospital and we thought we would play a game. Unfortunately, all of the games in the Family Break Room were missing pieces. As a last resort, we thought we would let him try to play the X-box that is in each patient’s room. His vision had improved slightly the last few days as he could read some of the smaller words and pictures on the wall across the room. I went down to the nurses’ station to check out an X-box game, but his first choice (Call of Duty) was already checked out. I ended up checking out the Legos Marvel game for him. We don’t have an X-box, so he had a hard time working the controller at first, but with his girlfriend’s help, he eventually got it and they played the game for a little while. He couldn’t really follow the directions on-screen or understand fully what was going on, but it was worth a try.

Rehab Team, Day #29 (Friday, October 6th)

99 days since onset.

This morning, we helped take Drew down to the Radiology department to get an ultrasound of his kidneys and bladder. With his difficulties emptying his bladder and his previous CT scan showing some inflammation in his kidneys, the doctors wanted to make sure his everything was OK.

In the afternoon, Drew’s brother and older sister came up from Provo to visit. Drew has such a busy schedule, and because he gets distracted so easily, there wasn’t a lot of time for them to visit. But they got to spend a little while with him after all the therapies were finished.