It All Started With A Fever, Part 3

The Acute Phase: A Momentary Awakening

The Social Worker at Primary Children’s Hospital told us today 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 disease.

ICU Day #3 (Sunday, July 2nd)

4:30 AM: The nurses and I had another Battle Royale with Drew. His bladder was full, but in his confusion, he couldn’t void. He had been so confused and combative, they didn’t want to leave a Foley catheter in his bladder for fear he might pull it out and harm himself. Yet now, he was agitated and pulling at all four restraints because of the pain from his bladder. Even with the heavy-duty restraints on his legs, he is kicking the footboard violently and twisting his body in some type of Houdini-esque attempt to free himself. Finally, he begins to tire from the exertion and he relaxes just enough to allow his bladder to finally release. Once his bladder empties, he becomes completely calm and every muscle in his body relaxes for about 2 minutes, and then, through some, small miracle, Drew “wakes up.”

4:45 AM: Drew seems to be back. His speech is still slurred and slow, and his eyes remain shut, but he talks to me for a few minutes. He still thinks it is Thursday, and when I tell him we him we had to go to the hospital again, he initially thought we must have returned to St. Mark’s. I help him to swab his mouth and brush his teeth, and then I let him put on his own lip balm. I am overjoyed to talk to him calmly and clearly and I pray that the worst is behind us. I call his mother on her phone and run to the parental sleep room in the ICU Waiting Room, where she is resting, to tell her the good news and to have her come talk to him.

4:55 AM: He recognizes his mother when she enters the room. “Hi, Mom,” he said. “Did you make it back to Girls’ Camp OK?” She can hardly believe her ears. He remembers Thursday and he is talking appropriatelly and asking questions. She talks to him for a few minutes, explaining he got sick, and that she did return to camp, but came home again the next day. She starts crying at the sound of his voice.

“Mom, I was having the craziest dream,” he said. “It was medieval times and I had some guys helping me to fight some bad guys with our swords. And do you know what happened, Mom?”

His mother smiled and said, “No, Drew, what happened?”

“We beat them… we won.” With that, he fell back asleep for a while. A short time later, we asked him about the dream again, but he couldn’t remember it.

10:30 AM: The doctors just finished rounding. The previous evening, they had been asking us about any family history of auto-immune disorders as they had started considering an auto-immune encephalopathy in light of all of his normal test results. However, since his confusion seemed to be resolving and he was becoming more alert, they feel certain this must be some type of viral encephalopathy. There are still some labs pending that might offer a clue as to which virus, but they said almost 50% of the time, they never identify the virus and it resolves on its own. Depending on his progress today, they plan to move him out of the ICU this evening.

11:00 AM: Drew’s brother, Alex, arrives from Kentucky. His grandparents pick him up from the airport and drive him straight to the hospital. Drew is surprised to see Alex.

“Hey, Drewbie,” Alex shouts as he enters Drew’s room in the ICU.

“Alex?” Drew opens his eyes and looks around the room until he sees his brother.

“I flew home to see you.”

“Why?” Drew still thinks it is Thursday.

“Because you have been sick,” Alex explained.

“I have?” Drew asks.

“Yes,” Alex said. “I was tired of just FaceTiming you and wanted to come home and see you.”

With that, Drew reaches out and grabs Alex around the neck, pulls him in close, and hugs him for several minutes. Everyone in the room is crying as we watch the sweet reunion.

6:00 PM: Drew slowly improves throughout the day. He awakes for 5 to 10 minutes at a time, and then back to sleep for 1 to 2 hours. However, he is remembering the date and is slowly getting oriented to what is going on. About 30 minutes ago, he sat up on the edge of the bed for 5 minutes, and then he got up and walked a few steps with the help of his brother and grandfather. He continues to be extremely dizzy, but then again, he has been flat in bed for most of the past 5 days. He said he still has some double vision and his speech is slurred and slightly delayed, but he seems to be making a recovery.

8:10 PM: He was only 20 minutes from moving out of the ICU when the first seizure struck. The nurse was on the phone talking to the Kitchen and ordering Drew a dinner tray.

“I’ll have the tomato-basil soup,” Drew said.

“See if they can give you a dinner roll with it,” his older sister said. “I had a dinner roll in the cafeteria with my dinner, and it was really good.”

“OK,” Drew said. “Can I have a dinner roll?”

“Absolutely,” the nurse said as he turned back to the phone to complete the order.

“Drew, are you OK?” His older sister asks. “Drew? Drew!”

As she begins to scream from the corner of the room, everyone turns back to Drew to see that his eyes have rolled upward, his head tilts backward and to the side at an odd angle, and his whole body has become rigid and spastic. As his body begins to shake violently, the nurse yells out to the nurses’ station, “Can I get some help in here please?”

An army of nurses and doctors flood into Drew’s ICU room. One nurse holds an oxygen mask to his face while others hold him on his side and keep him from falling out of the bed. His nurse rushes to get a medicine to help stop the seizure, and once he injects it into Drew’s IV, his shaking subsides. The Grand Mal seizure lasted about 90 seconds.

Not only was the transfer out of the ICU placed on hold, but this seizure signaled a major change that his condition would slowly begin to deteriorate.

© Copyright 2017 Jeff, All rights Reserved. Written For: Jeffrey Olsen