Jeffrey Olsen

The Acute Phase: Holding Our Breath

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 disease.

ICU Day #29 (Friday, July 28th)

9:00 AM: While Drew was in Radiology yesterday, they moved him to a new room in the ICU. The nurses and doctors know we are looking at another 10 to 14 days here in the ICU, so they moved us to the ICU room with the most windows, hoping it might help to cheer us up. Also, they wanted to move him to a room that had been thoroughly cleaned from any C-Diff or other germs since Drew will be immunosuppressed the next little while with the plasmapheresis treatments. We have now been in five rooms in the ICU: 2313, 2303, 2321, 2305, and 2314.

Drew continued running a fever last night between 38.8 and 39.4, but the nurses put a cooling blanket under him and turned the thermostat down in his room to 65 degrees, and this morning his temperature is under 38.0. I had to wear a jacket and get two blankets from the nurses so that as I spent the night in his room, I wouldn’t wake up with hypothermia.

Drew- Junior Year, Copper Hills High School

4:00 PM: First round of plasmapheresis today starting about 1:00 this afternoon and lasting about 2 hours.  The doctors also decided that it would not make sense to give Drew IVig after each plasmapheresis treatment only to have it wash out in 2 days. Instead, they plan to replace his plasma with donated plasma because it has most other parts of immune system to fight infection anyway. Then after the 5th plasmapheresis treatment, they will give him the IVig as it is longer lasting in his system.

8:30 PM: Somebody suggested that Dawn and I go out on a date or something and take some time away from the hospital. I had to chuckle. Even though I appreciated the sentiment, there is no way I could concentrate on anything else right now. Alex has vowed not to watch the new Spider Man movie until he can watch it with Drew.  Some of Dawn’s family were at Lagoon (a local amusement park) today, and they invited us to go, but we would have just worried sick the whole time and wished we were by Drew’s side. I did ask Dawn to make sure she agreed, and she did.

ICU Day #30 (Saturday, July 29th)

10:00 AM: Pretty quiet last night. His tummy still a little distended. They also gave him some Lasix to diurese some fluids off. No fever. Lungs clear. The nurses noticed at some time between 2:00 and 2:30 this morning that his EEG was showing no bursts at all. So the doctors backed his Pentobarbital drip down from 6 to 5. We finally saw a burst about 8:00 this morning, and he is having a burst every 2 or 3 screens. When the doctors rounded a short time later, they backed his sedation down from 5 to 4. Just hoping for a quiet day with no fevers and no infections.

3:00 PM: Our ward Relief Society came to the hospital today to prepare the McDonald’s Room lunch for families in of hospital patients. In all, about 9 adults and 2 of their children came and helped cook, serve, and clean up an awesome potato bar with all the fixin’s. A lot of people have asked how they can help, and since we are limited with visitors and anywhere to store items at the hospital, some of our Relief Society from our church decided they would donate a meal to serve at the McDonald’s Room (they called themselves “Team DREW”) and not only bless our family, but also many other families in the hospital. They didn’t know it, but Dawn sat and cried while she ate her lunch because of how overwhelmed she was by their love and support. We were extremely grateful to spend time with friends and neighbors and have a delicious meal and service on behalf of Drew.

Go Team DREW — McDonald’s Room Lunch, 29 July 2017

7:00 PM: Our family spent the afternoon swapping pictures and videos of Drew that we each had on our phones. We were really missing him today. I think part of it may have been seeing pictures of his Boy Scout troop return from their summer campout this afternoon. Knowing that Drew should have been camping and hiking with the past few days instead of lying in a medically induced coma was pretty hard. Plus the fact that he has been in the ICU for essentially a month now, and unconscious for more than 3 weeks, we are all getting more and more anxious and nervous, hoping that these plasmapheresis treatments will work this next week. We cried and laughed at some of the memories we had with Drew from the past few months, and made us more than ever pray to get him back.

ICU Day #31 (Sunday, July 30th)

8:00 AM: A relatively quiet night. No infections. No fever. Labs have been good. They did give him some extra laxatives and medication to help his bowels get going. They also planned to increase his Lasix to remove some excess fluid from his lungs and abdomen. They also asked Respiratory therapy to be more aggressive with his breathing treatments and suctioning every 4 hours.

7:30 PM: Drew received his second plasmapheresis treatment today from about 11 AM to 1 PM. Everything went well with the plasma, but they are going to hold off giving him a Pentobarbital bolus this time and just keep his sedation dose at 4 for now and just see if he needs adjustment later today.

9:00 PM: Alex and Ashley and I went to church at home today, and I was scheduled to teach a lesson to the Young Men and Young Women combined. I was fortunate to have one of the bishopric counselors also teach part of the lesson, and then I taught at the end. I really wanted to stress with the youth that people are more important than things. We read some stories from the scriptures, and then I talked about being nice to your family and those around you, because you never know when they may be taken from you. This evening we spent time visiting with several friends, neighbors, and family members as many loved ones stop by on Sunday afternoons and evenings to get updates and give love and support.

ICU Day #32 (Monday, July 31st)

3:30 AM: I used to like to sleep, but not so much any more because now when I sleep, I have bad dreams. The longer Drew has been unconscious, the worse the dreams have been getting. Well, I just had a really bad dream. Next to Drew’s bed every night I sleep in a recliner that is positioned so I can just open my eyes and see him and his monitors. I was kind of in that half-awake, half-asleep state, which might be why it seemed so real, but I thought I opened my eyes and saw Drew wide awake, sitting up in his bed, trying to scream but he couldn’t because of the breathing tube in his mouth. His eyes were wide open and looking right at me. I sat bolt upright in the recliner, my heart pounding out of my chest, and then I realized I had been dreaming. He still lay there in his medically induced coma, but I was wide awake and I cried for a while. I hate sleeping.

7:30 PM:  They took him off his feeds and are just giving him IV fluids till he can have a bowel movement. They are doing another enema right now. His stomach is really swollen and tight, so we hope things get moving soon. Today is one of the in-between days while we wait for the next round of plasmapheresis.

When you have a loved one in the ICU, your schedule becomes dictated by everything going on around you. The doctors do their rounds at specified times. The medications are on a schedule. There is time dedicated to bed baths and repositioning and respiratory treatments. The same can be said about watching people as you sit in the lobby and I am reminded of the ocean tides as people ebb and flow, in and out of the hospital.

ICU Day #33 (Tuesday, August 1st)

4:30 AM: Drew just received his second chest X-ray of the night. The nurse noticed Drew’s breathing tube had started to become a little loose, so he asked the respiratory therapists to come secure it. They worked on it for quite a while around midnight, but finally got it. However, about an hour later, Drew’s oxygen dropped into the 80’s and the nurse noticed his left lung was not inflating as much as the right side. So they took the first chest X-ray to see if the breathing tube needed to be adjusted, but it was fine. The nurses turned Drew to his other side to see if that would help, and after a couple of hours his left lung seemed to be inflating better, but his oxygen was still a little lower than it had been, which was why the doctor ordered a second chest X-ray. I got to look at it over the nurse’s shoulder, and although the breathing tube looked fine, his lungs look milky, just like they did when he had pneumonia a couple of weeks ago.

10:30 AM: The doctors stop by on rounds. The third round of plasmapheresis is scheduled to start in a half hour. He had a small bowel movement yesterday, but not nearly enough to allow them to re-start his feeding tube, so they plan to try more aggressive treatments today to help get his intestines moving again. Lastly, they confirmed that Drew does have pneumonia again, which we were disappointed to hear, but not unsurprising as he has become immunosuppresssed. They plan to start antibiotics immediately to stay on top of the pneumonia while they wait for the cultures to come back.

In the 2000 movie, Cast Away, Tom Hanks plays Chuck Noland, a FedEx executive, who survives a plane crash and becomes stranded on a deserted island. For some reason this movie popped into my mind as Tom Hank’s character tries to survive day after day the mental, physical, and emotional strain of survival. After four years on the island, some trash washes up on the shore one day that he is able to use to construct a sail for a raft, and (spoiler alert) he is ultimately able to be rescued by a passing ship and he returns home to Memphis, Tennessee.

I guess in a way, the uncertainty of Drew’s eventual recovery has brought every gamut of mental, physical, and emotional strain, just like Tom Hank’s character felt as he waited on the island for something to wash ashore. I guess my whole point is that I find some solace in the theme of the movie, which Chuck Noland states near the end as he tries to come to grips with the new reality he faces when he returns home and says:

“And I know what I have to do now. I gotta keep breathing. Because tomorrow the sun will rise. Who knows what the tide could bring?”

We are holding out hope that the tide will bring in something good for Drew, and in the meantime, we have to remind ourselves to keep breathing as well.

Gotta love little sisters, even when they grow up.

The Acute Phase: Hushing Our Fears

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 disease.

Everyday we make choices. Some are trivial, such as the color of your socks or what to eat for lunch, but some decisions are many times more significant with impacts not only in this world, but also in the next life to come. These monumental decisions that come at the crossroads of life are incredibly difficult and emotionally draining, but a choice must be made. At some point, each of us may eventually be faced with deciding whether to continue aggressive and uncertain treatment for a loved one, or simply to pull back and help them to be comfortable as the illness runs its course. Our family was given this choice for Drew this week.

“Stonewall Jackson was a general in the Confederate Army during the American Civil War. Many military historians consider General Jackson to be one of the most gifted tactical commanders in U.S. history. Once as General Jackson was discussing strategic options with his associates, a commander began his recommendation with the statement, ‘I fear we will not find our wagons tonight.’

“Stonewall responded to the words, ‘I fear,’ in his colleague’s observation with a penetrating truth that ultimately became the general’s trademark: ‘Never take counsel from your fears’” (Mary Anna Jackson, Memoirs of “Stonewall” Jackson, 1895, 264, excerpt taken from a BYU-Hawaii Devotional given by Elder David A. Bednar, December 2012).

ICU Day #27 (Wednesday, July 26th)

10:30 AM: All night long, Drew’s seizures continued to worsen, not only in frequency, but also in duration and clustering. The seizures would crescendo in intensity, at times with clusters of 7 or 8 seizures in less than 30 minutes. This cycle repeated over and over again throughout the night despite the large doses of medication that Drew has been receiving. Finally, starting about 5:45 this morning, he had a continuous seizure that lasted for more than 4 hours. I spent about 90 minutes suctioning his mouth as he was constantly hypersalivating with the sustained seizure. Finally, the 8:00 AM medications slowly started calming things down, but they took nearly 2 hours to finally break the seizure. Drew’s trend is ominous and disheartening and rapidly progressing despite all of the medications, treatments, and best efforts of the hospital staff.

Drew looking stylin’ in his khakis.

Noon: We had a meeting this past hour or so with all of the doctors (ICU, Neurology, Rheumatology, about 8 doctors in total).

One of the Neurology doctors started off by saying, “I think it is fair to say that despite all of our efforts, Drew’s seizures are the worst now than they have ever been, and they continue to progressively worsen.”

Another doctor added, “At this point, we cannot be certain that the seizures are no longer taking a toll. During a seizure, blood flow decreases in the brain, and if the seizure lasts less than 30 or 45 seconds, it does not necessarily do significant damage. However, when you start having clusters of seizures really close together, or sustained seizures lasting more than 5 minutes, then we typically start to see some damage.”

From the corner of the room, another one of the Neurologists, the director of the Epilepsy Program at Primary Children’s, noted that, “there is still a small chance that Drew could emerge from this illness with near-normal function, but probably only about 10%. There is also a 10% chance that he could still succumb to the illness. Most likely at this stage, though, is that he will fall somewhere in between those bookends, but exactly where he ends up is the big unknown.”

“With the study drug concluding, and after consulting with each of the other teams of doctors in the room, as well as discussions we have had with some of our colleagues around the country,” one of the ICU doctors said as he looked around the room at the other doctors, who were all nodding in agreement. “We feel that it is critical for us to take a much more aggressive approach to curbing his seizure activity.”

The Neurology doctor resumed, “We feel that Drew’s best chance now is to return him to a medically-induced coma for about 7 days, and truly shut his brain down to get some rest and protection from the seizures.”

“While he is sedated,” the Rheumatology doctor added, “We will start Drew on plasmapharesis in an effort to reboot his immune system so that it will quit attacking his brain. If you think about your body’s immune system as an army, when a virus or infectious agent attacks us, the army will fire missiles to destroy the infection. For Drew, however, some of his missiles are attacking himself, and up until now, all of our efforts to stop the bad missiles has been unsuccessful. So the plasmapharesis will essentially wash all of the missiles, good and bad, out of his immune system and his army will be essentially wiped out and need to be rebuilt from scratch — but hopefully this time with no bad missiles.”

Our daughter raised her hand, “We expected the plasmapharesis next, but why would you put him back in the coma when he required a high dose to maintain burst suppression last time?”

“Because the problem with plasmapharesis,” the Neurology doctor answered, “is that it not only washes the immune system, but it also washes out much of the anti-seizure medicines at the same time, which often results in an increase in seizure activity shortly after the plasmapharesis treatment. We feel the sedation will better protect Drew’s brain while we can try and stop his immune system from further attacks.”

“So how will the plasmapharesis work?” Our daughter asked. “And why will he be in the coma for 7 days this time instead of just 3 days?”

“Those are good questions,” the Rheumatology doctor said. “The plasmapharesis will consist of 5 sessions that will be spaced out every other day over the next 10 days. Additionally, we will plan to give him IVig immediately after each plasma treatment so that he may have some added protection from infections and also additional treatment to help suppress his antibodies causing the damage.”

The Neurology doctor added, “Because of the long half-life of Pentobarbital, we will be able to bring Drew out of the sedation prior to the last plasmapharesis treatment. Often with autoimmune disorders, patients will note improvement after only 2 or 3 treatments, but we plan to give Drew 5 treatments.”

The ICU doctors then warned, “With the more aggressive treatment also comes a higher risk of complications. In fact, we will be lucky if Drew doesn’t get an infection while he is immunosuppressed. Granted, we will do everything we can to prevent it, but after more than 7 days of intubation, and prolonged insertion of other lines and catheters, the risk of infection rises even without the immunosuppression.”

“Further, after putting Drew through so much without any success at stopping the seizures, and not knowing the extent of any possible functional or cognitive impairment, you do have the option to not take any aggressive measures and stop all treatments, essentially  just making him comfortable until he succumbs to the illness,” another ICU doctor explained. “Some families choose this, and we would respect that if this was your choice as well.”

We were not prepared for that choice. We knew Drew’s situation was very critical, but we thought he was stable enough that death would not be an option at this point. Tears started to spring from my eyes, and I looked at Drew’s mother and sister, and they were also crying. Once the impact of their explanation sunk in, it didn’t take very long for us to say, “We want Drew treated. Please let’s try the plasmapharesis.”

“Very well,” the ICU doctors nodded their heads, “we will start this afternoon to get Drew into burst supperssion.”

Dawn and I catching a nap in the McDonald’s Family Room.

In the Book of Mormon, there is a story that identifies the key to dispel fear and provide peace even in the face of great adversity. We read in Mosiah that in the land of Helam, Alma’s people were frightened by an advancing Lamanite army.

“But Alma went forth and stood among them, and exhorted them that they should not be frightened, but … should remember the Lord their God and he would deliver them.

“Therefore they hushed their fears” (Mosiah 23:27–28).

Elder David A. Bednar explains, “Notice Alma did not hush the people’s fears. Rather, Alma counseled the believers to remember the Lord and the deliverance only He could bestow (see 2 Nephi 2:8). And knowledge of the Savior’s protecting watchcare enabled the people to hush their own fears.

“Correct knowledge of and faith in the Lord empower us to hush our fears because Jesus Christ is the only source of enduring peace.”

4:00 PM: The family was bereft as we continued to try and process the dire situation and critical nature of Drew’s condition. Even though Alex had been sick earlier in the morning and Ashley had gone out to lunch with our neighbor, we felt after the Care Conference discussion it would be best to have all of the family come to the hospital to talk about Drew.

“I am not ready to see Drew in a coffin,” his brother shouted as tears welled up in his eyes. “What good will any of these treatments have been for if we just give up now?”

“We’re not giving up on Drew now,” I assured him.

“But Drew still has a chance to be completely normal,” his brother continued. “They said he still has a chance.  Why would they ask if we wanted to stop treatment now?”

“They said it was because some families don’t want to continue after so long and with a chance of brain damage,” I said as I shook my head. “We are not one of those families.”

Dawn and the children were so upset, I decided I had better skip going into work this afternoon and spend the time talking with them as we try to figure out the serious implications and possible outcomes. Granted, we were all disappointed that the Sage 547 drug and earlier treatments didn’t work for Drew, but the thought that some families might give up at this relatively early stage of the acute phase (which on average lasts 3 to 4 weeks anyway) just boggles the mind. There are also still several other options that have not been attempted beyond the plasmapharesis, so we vow to never give up on Drew, and that seems to help his brother and sisters calm down somewhat. We are definitely at a critical juncture and it is imperative that we can get the seizures stop, but in the end, we are still hoping for the best and agree that this treatment will give Drew the best chance to come back to us.

8:30 PM: As family continued to gather in the front lobby, we sat around and cried and hugged and tried to encourage each other that it would all work out for the best. To think that we were closer now to possibly losing Drew, even if it was still remote, had rattled the family. However, we reassured everyone that we were not giving up on Drew and would continue to battle these seizures. After all, we still had hope for our beloved son and brother.

The key to truly overcoming our fears is to have our focus firmly fixed upon the Savior at all times and in all places. Another example comes from Matthew 14: 27-29 when the Apostles were in a ship, tossed by a storm in the midst of the sea. The Savior went to them, walking on the water, but they did not recognize Him and they cried out in fear.

“Jesus spake unto them, saying, Be of good cheer; it is I; be not afraid.

“And Peter answered him and said, Lord, if it be thou, bid me come unto thee on the water.

“And he said, Come.”

Peter then walked on the water to Jesus.

“But when he saw the wind boisterous, he was afraid,” began to sink, and cried out, “Lord, save me.

“And immediately Jesus stretched forth his hand, and caught him, and said unto him, O thou of little faith, wherefore didst thou doubt?” (Matthew 14:30–31).

From Peter we can learn that we will be blessed as we respond immediately with faith in the Savior to His invitation. With his eyes fixed squarely upon Jesus, Peter stepped out of the boat and miraculously walked toward him on the water. However, as soon as his gaze was diverted by the wind and the waves, then fear crept into his heart, pushing out his faith, and Peter became afraid and began to sink. I tried to keep these examples in mind as I talked with the family. It has been a difficult day to maintain hope, but with continual reliance on the Savior and His teachings, we made it through this very hard day.

ICU Day #28 (Thursday, July 27th)

9:00 AM: Overnight, they had to re secure Drew’s breathing tube, and as they did that, the feeding tube got pulled out a little bit. Breathing tube looks good, but they will have to replace the feeding tube (the tip is in his stomach and they want it in his small intestine). His burst suppression is down to about 3 to 6 bursts per screen, and they want it at 1 to 3, so they will up his pentobarbital a little bit above the 5.0 it is currently at. His blood pressure has been OK most of the night as nursing has balanced the epinephrine and norepinephrine with the sedation all night. Lastly, he has been running a pretty high fever all night and is currently at 39.5 Celsius. We have been putting on ice packs and they have been giving him Tylenol and Ibuprofen, but his fever has been resistant (cultures are still negative).

11:30 AM: ICU rounds just finished. Labs and cultures all negative, so they will treat the fever but still do not believe he has an active infection. However, the ICU attending, Dr. Woods, said we are on high alert for infection prevention now and he will be a germ-Nazi going forward. As Drew becomes immunosuppressed, everyone needs to be very strict with hand washing and cleaning of everything going into his room, especially if we come anywhere near Drew. Occupational Therapy came and stretched his arms, but since Drew is sedated again with fluctuating blood pressures, they will hold off on getting him up to a chair for a while and just do ROM on his arms and legs again for now. One of the nurses also came and placed a new feeding tube through Drew’s nose down to his stomach, and hopefully into his small intestine.

Provo Freedom Run, July 4, 2015. Everyone is a little sweaty post-race.

3:00 PM: Dawn and Drew just went with the nurses down to Interventional Radiology for placement of the central line that will enable them to perform the first round of plasmapharesis tomorrow. Drew’s Pentobarbital level is at 6 on his sedation, but he is still not quite fully suppressed. He continues to run a fever this afternoon and we just helped the nurse put some ice packs on him so hopefully those will help bring body temperature back down. Blood pressure good, everything else good so far. Hoping for a quiet night and starting the next round of treatments tomorrow.

If you couldn’t tell, I love the words of Elder David A. Bednar, who discussed hushing our fears during at least three of his talks. He promised us:

“To not take counsel from our fears simply means that we do not permit fear and uncertainty to determine our course in life, to affect negatively our attitudes and behavior, to influence improperly our important decisions, or to divert or distract us from all in this world that is virtuous, lovely, or of good report. To not take counsel from our fears means that faith in the Lord Jesus Christ overrules our fears and that we press forward with a steadfastness in Him. To not take counsel from our fears means that we trust in God’s guidance, assurance, and timing in our lives….

“As we exercise faith in Christ and trust in His promises, we can walk into the dark with the absolute assurance that our pathway will be illuminated—at least far enough to take the next step—and then the next step—and the next step…. I recall listening to President Hinckley on several occasions counsel doubters, cynics, and critics that ‘everything will work out.‘ And he was right. Everything worked out—even though we did not know at the time all of the details and specifics….”

I believe everything will work out, and as we maintain our faith in the Savior, we can hush our fears and allow peace and hope to enter into our hearts. At a minimum, Drew needs that from us now more than ever.

The Acute Phase: A Flicker of a Flicker of Hope

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 disease.

In 1 Nephi 16:8, Nephi tells us that he had been blessed of the Lord “exceedingly.” He had just married and for a while his brothers stopped murmuring after he urged them to be more obedient to the commandments. Finally, the Lord had given Lehi’s family the Liahona, which had been leading them through the more fertile parts of the land on their journey through the wilderness. Things were looking up and it appeared the family was finally getting along and prospering on their journey.

However, just a few verses later in verse 18, disaster strikes. Nephi explains that as he and his brothers were hunting for food, Nephi’s steel bow broke, which was apparently the primary source of food for the entire family. With this unexpected crisis, everyone in the party except for Nephi, began to complain and worry and feel sorry for themselves. Why did the Lord allow Nephi’s bow to break? He had been obedient. He had been blessed. Yet just as things seemed to be going well, tragedy struck and threatened to destroy the whole family.

ICU Day #21 (Thursday, July 20th)

8:30 AM: Dawn stayed at the hospital last night for the first time in over a week because of how worried she was after Drew’s bad day yesterday. She was also worried about me because of how exhausted I looked. She told me to rest in the recliner in Drew’s ICU room while she took the first watch. I was too tired to argue. She later told the kids that I fell asleep in about 30 seconds. As with most nights, my sleep was restless and sporadic and not nearly enough.

School play (Arsenic and Old Lace), February 2016

Nothing really new as the doctors round this morning. We were disappointed that we would never find out if Drew received the placebo or study drug during the double-blind portion of the Sage 547 trial, which ended yesterday, but since he failed to respond during that first stage of the trial, he could proceed to the next round of the trial, or “open round” portion of the study, where we knew he would receiving the real drug this time around. With the promise of this new drug in mind, we hold out some hope and look forward to starting it later this afternoon.

9:00 PM: We are trying not to get our hopes up too high because we have been hoping for a few weeks now, but Drew has only had one seizure since about 5:00 this afternoon, and this time he is not sedated. Granted, he has a lot of medicines on board that can make you sleepy, but things are looking a little brighter for the first time in a long time. No fever. Blood pressure good. Lungs sounding better. Not sure if it is the anti-seizure medicine cocktail, or possibly the study drug which was started around 1:00, but we are praying hard that maybe Drew will open his eyes and wake up for the first time in 2 weeks.

Like Nephi and his broken bow, the scriptures are replete with many examples of major challenges that arise in our lives, often through no fault of our own, and threaten to destroy us or our loved ones. In April 2009 general conference, President Henry B. Eyring said, “With all the differences in our lives, we have at least one challenge in common. We all must deal with adversity.”

I have worked in hospitals for more than 20 years, and I know that if you wait around long enough, you will always meet someone who is worse off than you. These last few weeks in the Primary Children’s ICU have been no different as many, many sick children have come and gone, and some have even died. Some children have cancer, some are injured in accidents, and some are injured through abuse or other tragedies not of their own making. These don’t even begin to address children who suffer from emotional or spiritual hardships, depression, bullying, addictions, divorce, or the many other trials that seem so rampant in the world around us. At times I feel guilty drawing attention to Drew’s illness, and I dare not suggest it is the worst thing that could happen to a family as I look at others who are suffering around us. Deep down, it is comforting to know that we still have Drew with us, even though he is sick, but we are not alone in trials or hard times that all must face at some time in their lives.

ICU Day #22 (Friday, July 21st)

8:30 AM: Drew began having a few seizures again starting about 10:40 last night, but the medicines were keeping them at bay until about 1:30. Then the seizures gradually increased in frequency more and more until about 4:30 this morning when they were pretty much continuous for about an hour. The nurse was giving him everything she could, and the ICU doctor was in here twice to help, but really, nothing was touching the seizures. Starting about 5:00 AM, though, the seizures slowly started to decrease in amplitude and became essentially non-clinical, and the brain wave seizure activity slowly tapered down until about 5:40 this morning when everything was quiet again. So, Drew has had no seizures for 2 and a half hours now. We’ll wait to talk to Neurology about their thoughts, but hopefully he’ll continue to have longer and longer stretches without the seizures.

Father & sons golf trip, August 2016

9:00 PM: The last 24 hours we have finally started seeing a little progress. As part of the study for the Sage drug, the first 6 days were double-blind, but everyone was pretty confident Drew received the placebo. So yesterday afternoon they started the open label portion, which means he would receive a full dose of the study drug. He also started testing positive for some ketones as a result of the Ketogenic diet, and his pneumonia and C-Diff are resolving. Finally, they have been tinkering with the dosing and timing of his several seizure medications. Not sure which one of these several developments might be responsible — more likely all of them together are helping — but he has twice gone up to 4 hours without a seizure, and when he does have them, they have been shorter in duration and less intense. The Neurologist this morning said he didn’t think the progress was due to the Sage study drug yet because it hadn’t been running long enough, so we may see even more later today as the study drug builds in his system. We’re hopeful, but he still hasn’t opened his eyes are really “awakened” yet. We’ve had so many disappointments along the way, we’re trying to be hopeful without building the expectations too high.

As I have been contemplating broken bows and tragedies in life, I love this observation from Elder Richard G. Scott that he shared in October 1995 General Conference:

“Just when all seems to be going right, challenges often come in multiple doses applied simultaneously. When those trials are not consequences of your disobedience, they are evidence that the Lord feels you are prepared to grow more. . . . He therefore gives you experiences that stimulate growth, understanding, and compassion which polish you for your everlasting benefit. To get you from where you are to where He wants you to be requires a lot of stretching, and that generally entails discomfort and pain.”

I suppose the Lord has a plan for Drew and our family, so we just have to put our trust in Him.

ICU Day #23 (Saturday, July 22nd)

6:30 AM: It took me several minutes in the early morning light to be sure, but I had to ask the nurse for her opinion as well.

“Did Drew just blink?” I asked. His eyes have remained closed most of the past three weeks, but occasionally his eyelids would partially open as his eyes roll back during his seizures. However, this time his eyes looked different.

“You know,” the nurse said as she peered intently at Drew’s eyes, “I have suspected a couple of times this morning that maybe he has been blinking a little bit.”

I ran around to the foot of his bed to check the EEG screen, and sure enough, he was between seizures, so any eye movement just now would not necessarily be due to any seizures. Sure enough, it happened again, and he is blinking his eyes a little bit.

I run back to the side of Drew’s bed and lean down close, right in front of his face. “Drew, can you see me? Can you hear me?”

Drew’s eyes stare blankly ahead through half-opened eyelids. No response.

I grab his hand. “Drew, can you squeeze my fingers?” No response.

I look into his eyes. “Drew, if you can hear me, can you blink twice?” No response.

11:00 AM: Although it appeared Drew was blinking earlier in the morning, it only lasted for a short while. He was never really able to respond or followed any commands, nor would his eyes track or move, nor could he move anything else yet, but he just stared at the ceiling for a few moments through half-opened eyelids. Our initial excitement had faded over the course of the morning, and when the Neurology doctors came by for their rounds, they cautioned us that Drew is still not out of the woods yet. He will go 3 or 4 hours with lots of little seizures, and then 3 or 4 hours without. Encouraging, but got a long ways to go, and now he was back to having continuous seizures every 3 to 5 minutes again. They have him on 6 seizure medications right now, and they are going to try and discontinue 2 of them slowly today. They also had to put his EEG back on his scalp to continue to monitor the activity. A little progress today, even it was only short-lived.

9:00 PM: Drew continued to have seizures the entire day. The EEG pattern is cyclical over the course of about 4 hours. The seizures start about 8 to 10 minutes apart, and then they gradually increase in frequency as they decrease in duration. Towards the end of the cycle, the seizures are nearly constant, only about every 1 to 2 minutes, and then he has a very short break less than an hour (earlier in the morning, he was having a 3 to 4 hour break, but that had decreased as the day progressed), and the cycle begins again.

In a BYU Devotional in July 2015, Jennifer Paustenbaugh observed, ” It is interesting that Nephi, Laman, and Lemuel saw many of the same extra­ordinary events caused by the power of God but that only Nephi recognized them for the miracles they were.” This would include Nephi’s ability to find the appropriate type of wood to build a new bow, as well as a strong enough material for a bowstring. Even more astounding is Nephi’s ability to craft a balanced bow and an arrow to match, without any previous training or experience, and that this replacement bow was able to shoot straight enough with some degree of accuracy to hit moving game. Throughout this process, Nephi’s faith never wavered once. I hope that I can emulate Nephi’s example to pray for guidance and then move forward with faith, fully expecting a miracle to occur in my life to overcome any trials or tribulations that may come.

ICU Day #24 (Sunday, July 23rd)

5:00 PM: Busy day today, but similar to the last two Sundays, Dawn and Erin attend church at the hospital and stay with Drew while I go home with Alex and Ashley to attend church and most of my leadership meetings. Not that a lot changed today. Drew has pretty much been having seizures for just over 24 hours now without stopping. They are the smaller, focal seizures, but they are occurring about every 2 to 3 minutes and one of the manifestations is hypersalivation, so he has been spewing tons of saliva every time he has a seizure. Since his seizures have been non-stop, he hasn’t been able to open his eyes or blink or “wake up” any further. The doctors said that Drew is still on too many medications and they plan to continue weaning more of the medicines and adjusting a couple of others to try and control the seizures better. They will only give him sedating medications to try and stop just Grand Mal seizures, otherwise, these small focal ones will not cause damage and they don’t want to give him any additional medications that haven’t really been effective anyway. The study drug will run through Wednesday, and they will continue to adjust medications each day. If Drew is still having seizures after the study drug, then we will have another care conference with the doctors and discuss next options.

9:00 PM: As the evening wore on, I could tell that Dawn was becoming increasingly despondent. Alex even commented that the Sage 547 study drug didn’t seem to be doing anything for Drew, and the whole family was anxious and irritable. With each passing seizure, the gloom and despair was gradually returning to Drew’s room and to our family.

I noticed when I arrived home Sunday morning that my wife’s mascara had stained the bedsheets from where she had been praying the night before.

After dinner, Dawn and I were sitting at Drew’s bedside watching him fight yet another convulsion contorting his face and mouth. With tears in her eyes, Dawn turned to me and asked, “Is this truly what is best for our son?”

“I don’t know,” I responded. I really wasn’t sure what to say or do, when I felt a prompting to reach out to the Gibson family in Colorado. Bryan and Natalee Gibson’s daughter had contracted F.I.R.E.S about 18 months ago, and I had briefly made contact with them through social media. I pulled out my phone and sent them some questions about when their daughter “woke up” from her FIRES. Instead of typing out a response, they simply asked if they could call me. I gratefully accepted.

We talked for about 25 minutes. Through plenty of tears on both sides of the telephone call, the Gibsons shared several items that are just too difficult to put in a blog. I was so grateful that they took the time to talk to me, and they said they are more than willing at any time to talk again, because they know all to well the fear and uncertainty that we are going through. They assured Dawn and I of the power of Priesthood blessings, and they are certain that their daughter would have been much worse off if not for the many prayers and people fasting on behalf of their daughter and their family. Natalee said it was really hard to watch the seizures, and she remembered asking the same exact question Dawn had just a few minutes earlier, but in the end, the seizures were not nearly as damaging as some of the medications they were administering with minimal impact on the seizures.

In the end, the Gibsons answered one of our big questions, which was to describe the process of how their daughter and some of the children with this syndrome “wake up” from FIRES. It seemed from some of the blogs and our own expectations that Drew would literally “wake up” once the seizures stopped, just like rolling out of bed in the morning (albeit much weaker after a few weeks of seizures). However, the Gibsons explained that most of the kids do not “wake up” like when somebody flips a light switch. In reality, the seizures gradually taper off and the children come out of their comas (whether induced by medicines or seizures) more like the ocean tides, and more specifically similar to when the tide goes out, and the waves gently recede little by little. Just having that change in expectation has helped us as we sit and watch Drew have seizure wave after seizure wave, and we hope and pray that the tide is continuing to recede ever so slightly more until one day, hopefully very soon, the tide of seizures will abate and Drew will be whole again.

Finally, one last comment about trials and hope from April 2014 general conference by President Dieter F. Uchtdorf , who counseled:

“We can choose to be grateful, no matter what. This type of gratitude transcends whatever is happening around us. It surpasses disappointment, discouragement, and despair. It blooms just as ­beautifully in the icy landscape of winter as it does in the pleasant warmth of summer. . . .

Being grateful in times of distress does not mean that we are pleased with our circumstances. It does mean that through the eyes of faith we look beyond our present-day challenges. This is not a gratitude of the lips but of the soul. It is a gratitude that heals the heart and expands the mind. . . .

True gratitude is an expression of hope and testimony. It comes from acknowledging that we do not always understand the trials of life but trusting that one day we will.”

Here’s to hoping that someday we will understand this trial for Drew and our family, but in the meantime, we will be grateful for the many blessings we have received, and we will press forward in faith, fully expecting miracles along the way.

The Acute Phase: The Pavilion

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 disease.

During the frigid, Missouri winter of 1839, after spending several months imprisoned in Liberty Jail, the prophet Joseph Smith cried out in anguish, “O God, where art thou? And where is the pavilion that covereth thy hiding place?” It seems that despite our pleas, and all the prayers and fasting on behalf of Drew, perhaps God has hidden himself far from us the last several days. How long will God allow Drew to be sick?

ICU Day #17 (Sunday, July 16th)

1:00 AM: The hospital can feel like such a cold, lonely place in the middle of the night. I think they purposely program the thermostat to be colder at night to conserve energy, but the night staff seem to just expect and accept the icy temperatures as most of them wear jackets and sweatshirts. Sometimes I take a break and walk the hospital corridors and lobbies in the wee hours of the morning, and I am absolutely certain that I am not alone, even though I cannot see anyone beside me.

We are more than halfway through the slow removal of the deep sedation, and already we are starting to see increased brain waves. However, we just had a major scare as they rolled Drew onto his side to clean his back, his oxygen saturation dropped to near 50%. Respiratory therapy and the nurse both tried to get it back up, but it wouldn’t climb above 70% (normal is over 90%). They quickly rolled him onto his back and started manually bagging and suctioning his lungs repeatedly, but his oxygen wouldn’t come up. Two of the doctors and the charge nurse were summoned and they all worked together for several minutes until finally his oxygen slowly climbed back to 90%. A stat chest X-ray revealed that his left lung was not fully inflated and both lungs were really full of fluid and secretions. Respiratory Therapy readjusted his breathing tube and the doctors ordered breathing treatments with Albuterol to see if they could improve his air flow. Although things turned out OK, the doctors and staff were pretty intense and concerned for several minutes as they worked to keep Drew breathing.

Homework

10:00 AM: While Erin and I attend church at home, Dawn, Alex, and Ashley stay with Drew and plan to attend the Sacrament meeting held at the hospital. Just before they leave for the church service, the Neurology doctors round on Drew. The deep sedation is turned off now, but it will again take several hours for the Pentobarbital to metabolize out of his system. Despite his several seizures already, they try to explain that his brain wave activity on the EEG is showing some improvement with fewer “superimposed seizures” on top of the scrambled background activity, and part of this may also be attributable to his emergence from the deep sedation. Plan is to increase the ratio on his Ketogenic diet and addition of another seizure medicine (Zonisamide) this afternoon.

2:00 PM: The more the Pentobarbital dissipates from his system, the worse the seizures are getting. Fortunately, almost all of the seizures are just focal and not Grand Mal. Still, the longer his seizures keep going, the higher his blood pressure and fever creep. The ICU doctors call the neurology doctors and they don’t want to give him Propofol or any other sedative yet. All of the sedation has definitely started to take a toll on Drew’s body, and the Neurology doctors strongly feel that they want Drew to ride the seizures out for at least 6 to 8 hours after the Pentobarbital stopped and just see if the seizures persist or not.

11:00 PM: Drew’s limp body is pale and clammy. He still has not regained consciousness and his pillow and bedding are damp with his sweat from numerous seizures all afternoon and evening. Lots of people in his room right now checking his labs, running an EKG for the study drug (he is participating in a double-blind study for Sage 547, but we think he got the placebo), getting ready to start him on some Propofol for a few hours. He has had lots of seizures and his blood pressure has been slowly rising all day. They’re checking his electrolytes to see if correction is needed with all the fluid they’ve been diuresing off today, and then the ICU doctors just talked to Neurology and they agreed to temporarily place Drew back on a Propofol and Ketamine drip to give his body a rest until morning. Once the sedation enters, his body seems to relax for the first time all day. The ICU doctors say they will discuss more in the AM with Neurology, but it seems to our family like the two groups of doctors are not entirely on the same page.

ICU Day #18 (Monday, July 17th)

8:00 AM: Drew looks good this morning, but he is back under the sedation again. All night, the nurses returned to the balancing act between his blood pressure, sedation, and seizures. The ICU doctor said we’re playing it “hour by hour.”

10:30 AM: The Neurology doctors plan to continue making adjustments to Drew’s seizure medications, but the ICU doctors are talking about taking Drew to Radiology for another type of scan to pinpoint where the seizures are occurring in his brain. The Neurology doctors are not convinced we need this scan unless we plan to do surgery, which really upset the family that surgical intervention was even being discussed. The Neurology doctors assure us that there are still many other options to try before we get to a surgical option. Again, the doctors don’t seem to be on the same page. Either way, the Neurology doctors add a Ketamine drip with the Propofol to try and improve the seizure control, because Drew is still having seizures with just the Propofol by itself.

9:30 PM: Chest X-ray from tonight is improved over the one yesterday, but still has some phlegm and a little fluid. Left lung looks much better and is more fully inflated. With the EEG screen in Drew’s room, we have been able to watch his brain waves ourselves. In a way it is reassuring to see how things are progressing with his seizures, but it also makes us more acutely aware when the seizures are occurring. Interestingly, the doctors started increasing Drew’s Ketamine drip this evening to try and bring the seizures more under control, and since that time, I noticed that his seizures are no longer constant but have developed a rhythmic pattern with a little crescendo before each seizure. I started tracking the frequency to see if the seizures are improving or worsening, and right now they are occurring every 8 minutes and lasting about 30 to 50 seconds each. We’ll see which way they trend.

Elder Henry B. Eyring said, “God is never hidden, yet sometimes we are covered by a pavilion of [our own] motivations that draw us away from God and make Him seem distant and inaccessible. Our own desires, rather than a feeling of “Thy will be done,” create the feeling of a pavilion blocking God.” In every priesthood blessing given to Drew, and every prayer uttered by our family, we always ask “thy will be done,” but perhaps in our hearts we aren’t fully committed? We want our son/brother back so desperately, but Drew is asleep right now, so I guess it is up to the rest of us to put our full faith and trust in the Lord and His will, but it sure is easier said than done.

ICU Day #19 (Tuesday, July 18th)

8:30 AM: Well, the dam burst last night. Drew had not had a bowel movement in nearly 10 days, so they have been pumping him full of laxatives and medicines to help get things moving again. Finally, he had multiple bowel movements last night from 11:00 until about 5:00 or so this morning. So we were pretty busy with that much of the night. Also, last night his seizures were occurring every 7 to 8 minutes, but since about 6:30 this morning, they have been occurring about every 4 minutes — these are just the little, sub-clinical seizures. Unfortunately, the cultures came back positive for C-Diff (Clostridium Difficile), which is an infection in his intestines and a reason for his diarrhea last night. The doctors say this is common when a patient has been in the ICU and receiving antibiotics for a prolonged period of time, so they need to add another antibiotic to treat this new infection.

I have been talking this morning through Facebook with the Gibson family from Colorado, whose daughter had FIRES last year, and they have been sharing some of the many milestones and concerns that are too numerous to mention in a blog. Their words of advice have been comforting, but the toughest comment they shared was that we are truly engaged in a marathon with FIRES, and not a sprint. Today is the last day of the double-blind portion of the Sage 547 study, and then regardless of whether he had the placebo or not, we will likely start re-treatment with a higher dose of the Sage 547 starting tomorrow night or Thursday morning. We are praying he had the placebo at this point, because the study drug did not seem to have much of an effect otherwise.

Airport Reunion with Alex from his 2-year Mission, August 2017

8:30 PM: The ICU doctor again came to us this afternoon to ask for consent for a SPECT scan for Drew’s brain to see where the seizures are occurring. The whole discussion is upsetting to the family because this really wouldn’t impact his current treatments, but would be preparatory for possible surgical intervention, which we are nowhere prepared to discuss for Drew yet. We ask to leave it for discussion for our first Care Conference, which is scheduled for 11:00 tomorrow morning and will allow us to meet with all the doctors together, ask questions, and agree on a solitary treatment plan going forward.

Elder Eyring continued, “We can’t insist on our timetable when the Lord has His own…. Sometimes our insistence on acting according to our own timetable can obscure His will for us.” I firmly believe the Lord knows what is best for us, and we must rely on His wisdom, but His timetable is even harder to accept sometimes. We want blessings now. We want a miracle for Drew now. How much more does the Lord want us to learn from this Groundhog-Day of a nightmare we have been repeating  for nearly 3 weeks now?

ICU Day #20 (Wednesday, July 19th)

9:00 AM: Drew finally came off all of the sedation medicines last night about 8:00 PM, and now he just has the several seizure medications on board, but he is still not conscious yet. Continued seizures most of the night, but there were some periods of calm at times, usually for about 30 to 45 minutes after receiving some of his medications (the doctors believe the Phenobarbital is having the biggest impact). Then the seizures would gradually return. Most of the seizures are focal and limited to his eyes and mouth watering, lips moving, coughing, rising blood pressure as he has his seizures. Overall, his seizures seem to be getting less intense and shorter duration, but at times they are still occurring every 3 to 4 minutes. His pupils are more reactive this morning, and ventilator settings are minimal. Still getting antibiotics for both pneumonia and C-Diff.

11:30 AM: Family Care Conference this morning. We meet with the Social Workers, ICU doctor, Neurology doctor, and the Rheumatology doctor. As we discuss the options and care plan, it seems like everyone is finally on the same page. One question from Drew’s brother punctuates the main concerns of the family — are the multiple seizures causing damage to Drew’s brain? The doctors explain that the types of seizures Drew has been experiencing will not have a direct impact on Drew’s brain, but that these are simply symptoms of the underlying illness. Whatever is causing Drew to have seizures would be the same cause of any possible damage to Drew’s brain, not the seizures themselves. The plan for this coming week is to continue with the study drug and attempting to control/stop the seizures with the cocktail of medicines. If things persist into next week, we can then discuss the next round of options — and, most importantly, the SPECT scan and any surgical options are way down the road and won’t be discussed again for a few weeks.

Willing Drew to Get Better

9:00 PM: We have gone through many nurses and aides in the ICU now, and almost all of them have been exceptional and above average, but there were two nurses who were not, and today was one of those nurses. This afternoon, following the Care Conference, Drew started having more and more seizures, and it was difficult to find the nurse let alone ask her about anything to stop the seizures. She seemed to be more interested in chatting with her friends at the nurses station then attending to Drew, and several times the kids would run out to ask her to help suction Drew, and she was gone, nowhere to be found. At one point, the kids timed her and she did not step into Drew’s room for nearly two hours. As the day wore on and the lack of attentive nursing care persisted, Drew’s blood pressure and fever also began to climb. After shift change and the new nurse started in the evening, Dawn went and talked to the charge nurse and asked to never have that nurse assigned to Drew again.

11:30 PM: The seizures continued to build until this evening and the night nurse was trying to catch up from the moment she started her shift. Drew’s fever climbed up to 39.8, his blood pressure was sky high at about 180/100, and he was coughing and coughing like crazy. Dawn was so angry with the day nurse as it seemed everything started spiraling out of control during the afternoon and was finally reaching a crescendo tonight. The worst part was when Drew was coughing so hard and so frequently that he vomited all over everything. The doctors had to come into his room and help manage Drew while the nurse could give him some medications. In the end, they had to re-sedate Drew on Propofol and Versed so that he could get some rest and bring his fever and blood pressure back down. They are getting worried about using the Propofol much longer because his labs have been all over the place with his electrolytes. Still, after a terrible day like today, we’re not sure it could get much worse. Multiple, nearly-constant seizures, infections in his lungs and intestine, vomiting, coughing, and still Drew remains unconscious and unresponsive.

As I contemplate God’s will and timing, I am reminded of the story in the book of Daniel of Shadrach, Meshach, and Abed-nego, three young men who refused to worship King Nebuchadnezzar’s idol. The king warned them that they would be cast into a burning fiery furnace if they didn’t comply. They refused and said:

“If it be so, our God whom we serve is able to deliver us from the burning fiery furnace. …

“But if not, be it known unto thee, O king, that we will not serve thy gods.” (Daniel 3:16-18)

Perhaps it is only fitting that as Drew passes through his own furnace of FIRES, whatever and whenever the outcome may be, we will continue to do our part and obediently rely on He who is mighty to save.

The Acute Phase: The Calm Beneath the Storm

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 disease.

ICU Day #13 (Wednesday, July 12th)

5:30 AM: The family is anxious to see if Drew can wake up when they bring him out of the coma today. He hasn’t opened his eyes or become conscious enough to communicate since last Thursday. As he lays in the coma, we sit and watch all the monitors that make sure he is breathing and his heart is beating. The doctors are pleased with the burst suppression (lack of seizure activity) as noted on his EEG brain waves for the last 48 hours. They plan to proceed with bringing him out of the deep-sedation coma later in the morning.

Drew did have a drop in his oxygen saturation early this morning. The nurses and respiratory therapists tried to adjust his ventilator and breathing tube, but they were struggling to get his oxygen levels back up, so the doctors ordered a stat chest X-ray that showed some increasing levels of infiltrates and secretions in his lungs, but nothing to worry about yet according to the doctors. Most patients in a coma cannot cough or move the secretions, which is why they build up, and Drew did not run any fevers last night. They plan to take cultures to check for any bacteria, and then they ask the nurses to try and reposition him more often.

9:00 AM: The doctors order the deep sedation to be reduced by 50% and start bringing him out of the deep sedation.

Drew’s 17th birthday

Noon: The doctors now completely stop the Pentobarbital and tell us it will actually take several hours for the sedation to wear off enough for Drew to open his eyes and wake up, but they plan to continue watching his brain waves on the EEG, which will show any seizure activity long before he is visibly “awake.” We all anxiously watch and wait to see what Drew’s brain will decide to do.

2:00 PM: As the Pentobarbital metabolizes out of Drew’s system, we slowly see an increase in the brain wave activity on his EEG. The first two hours off of the deep sedation are so good, the nurses have me stretch his legs in the bed and we reposition him a couple of times to work on clearing his lungs. Unfortunately, just now we see a seizure on his EEG and our hearts break a little.

3:45 PM: The doctors come meet with us and tell us that they need to put Drew back into a medically-induced coma again. Although his brain waves looked good the first two hours, his seizures returned starting at 2:00 and since that time, he has had “a lot” of them. I glance at the EEG monitor as they talk, and there is a lot of background activity as well as at least 7 spikes of superimposed seizure activity just since 2:00. The doctors plan to return him to the coma under deep sedation for another 48 to 72 hours to try and suppress the seizure activity and break the pattern.

5:00 PM: We were so anxious to see Drew “wake up,” but it just wasn’t meant to be. Dawn wants to go out to the car to talk because she feels that is the only place we can be alone. Once we get out to the parking garage and close the car doors, Dawn starts screaming and hitting the steering wheel with her hands. I tell her to let it out because she tends to hold everything in and worry. I hold her in my arms as she sobs, and her shoulders shake violently as she releases all the pent up dissappointment, worry, and fear from not only the last several days, but also the fear of what lies ahead.

ICU Day #14 (Thursday, July 13th)

8:00 AM: Continued seizures overnight, although mostly of the sub-clinical, focal variety. The Neurology doctors were not happy with the lack of suppression since yesterday and adjust the Pentobarbital dose with the goal of no seizure activity (per Drew’s EEG) for a solid 48 hours, which means the soonest they will try to bring him out of the medically-induced coma again will be Saturday morning.

Jazz game from the nosebleeds, March 2016

9:30 PM: A follow-up MRI of Drew’s brain was performed this afternoon to compare to the one he had last week. The good news is that the results showed no real changes from last week, and that everything still appears relatively normal. In fact, that is the frustrating thing at this point: everything appears normal and healthy other than his persistent seizures.

The gloom from yesterday’s return to the medically-induced coma still hangs heavy.  Tomorrow will be two weeks since Drew’s brain got sick, and in many ways we still are no closer to him getting better. An even bigger unknown is what to expect the next few days and weeks. Last Sunday morning, the Stake President and one of his counselors and a couple of members from our ward came up and gave each of our family Priesthood blessings. It was a sweet moment and the Spirit was strong with the promise of hope and peace. Well, five days later, Dawn was feeling especially low again and she asked her brothers to come to the hospital and help me give her a blessing tonight. When they arrive, we find a secluded part of the lobby and give her a blessing. The Spirit was especially strong as her brother concluded the blessing, and afterwards, we all hug and cry and visit for a while to encourage each other. It might seem like a trite saying at times, but truly, families are forever.

ICU Day #15 (Friday, July 14th)

1:00 AM: A little over one hour ago, Drew’s oxygen saturations dropped quickly. The nurses worked frantically to bring them back up, but they were only having minimal success. Respiratory therapy was called, and as they suctioned and secured his breathing tube, the nurses and I helped to reposition him to improve his oxygen. The doctors were also notified and once his oxygen had stabilized, they ordered a stat chest X-ray that, although still no pneumonia, there were worsening infiltrates and phlegm in both lungs. The doctors ordered some aggressive respiratory treatments and repositioning to try and clear his lungs.

4:00 AM: The Respiratory Therapist returned with a chest percussion machine and starts targeting different areas of Drew’s chest, followed by suctioning of lots of secretions. Following the treatment, his oxygen improves slightly.

8:00 AM: Another respiratory treatment with another bump in oxygen saturation and more secretions suctioned out. Additionally, his seizures remained at bay under the deep sedation, with no activity. The nurses have also requested an air mattress to help prevent Drew from getting any bed sores. He has essentially been in a coma since last Thursday, and appears will continue to be in bed for several more days, so the air mattress is ordered.

High tops in bed for part of the day to help prevent drop foot contractures.

4:00: The doctors ordered an echocardiogram of Drew’s heart this afternoon. The Pentobarbital can start to be really damaging on a patient’s heart and kidneys, and some of his labs have shown some changes, so they wanted to double check and make sure his heart is still holding up OK with the deep sedation. Luckily, Drew’s heart looks strong, but the doctors told us they don’t want to keep him on the Pentobarbital much longer.

10:00 PM: It was kind of status quo for Drew today at the hospital. He remained deeply sedated for suppression of his seizures while buying time for the seizure medicines to build up in his system. As such, we decided to drive up to East Canyon for a few hours to join our ward Youth Conference.

We had originally planned to help out with the Youth Conference being held this week, and both Drew and his younger sister would have been in attendance instead of just his sister. With Drew stable and not changing, I thought we should drive up and particpate with the testimony meeting planned for this night. Dawn accompanied me, which was a beautiful drive through the canyons east of Salt Lake City. As we waited for the meeting to begin, I became a little emotional watching some of Drew’s friends and imagining what Drew should have been doing this week instead of lying in a hospital bed in a coma. The testimony meeting was a spiritual uplift and many of the youth expressed concern and prayers for Drew. We had to leave before the end of the meeting in order to get back to Drew, but it was a nice couple of hours to escape the hospital.

ICU Day #16 (Saturday, July 15th)

8:30 AM: At one point, I counted last night, and Drew has 35 tubes or wires attached to him: there are 19 wires on his head for his EEG; his breathing tube in his mouth; his feeding tube in his nose; 1 arterial line in his right wrist; 1 PICC line in his right elbow; 1 reulgar IV in his right forearm; 3 regular IVs in his left elbow and wrist; 1 Foley catheter; 2 pulse oximeters measuring his breathing (one for the EEG and one for his telemetry); he has 3 telemetry wires attached to his chest; and 2 lines for his SCDs on his legs to help prevent blood clots. It takes a lot of hands to help turn or reposition Drew not only because Drew is a big kid, but just to manage all of the lines to not pull anything out.

The doctors do plan to start bringing Drew out of the deep sedation today, but this time they plan to wean off the Pentobarbital much more slowly. So they plan to start gradually tapering it off starting about 9:00 AM and say it will not be completely off until 24 hours later. Additionally, his cultures grew an organism last night and he now has pneumonia which they will start treating with an antibiotic. We are anxious to see if Drew can fully wake up this time, but we now realize it likely won’t be until Sunday as they bring him out of the sedation more slowly this time around.

The Acute Phase: Into the F.I.R.E.S.

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 disease.

ICU Day #9 (Saturday, July 8th)

5:30 AM: Drew’s seizures continue to spiral out of control over night, and for most of the seizures, the nurses are having to help him breathe. At one point around 3 AM, he has 4 seizures in one hour, and the Ativan and other medicines they are giving him to stop the seizures no longer seem to be helping. The nurses are working frantically and diligently to maintain his oxygen saturation through kind of a pseudo-CPR using a combination of jaw thrusts and a breathing bag. There are three nurses taking turns through the multiple seizures, rotating as their arms and hands fatigue.

When the ICU doctors arrive and see the gravity of the situation, they quickly discuss with the nurses to determine a course of action, after which they nod their heads in agreement. One of residents breaks from the huddle and comes back out of Drew’s room to where I am standing in the hallway. As she approaches me, she says, “It has come to the point that we need to insert a breathing tube into Drew’s throat and lungs so that he can maintain an open airway during these multiple seizures.”

I nod and respond, “Yes, I understand — the nurses have been bagging him most of the night, and the seizures certainly seem to be worsening.”

In order to intubate Drew, the doctors have to sedate him and they hope that the sedation will also help to stop the seizures. I stand out in the hallway and watch nervously as two Respiratory Therapists race into the room with a ventilator and other equipment, and then the 10 to 12 nurses and doctors in the room all converge around Drew’s bed as they quickly work to insert Drew’s breathing tube. Between the breathing tube and the sedation, it seems like Drew’s body stops shaking for the first time all night.

Father and Sons outing to Top Golf, April 2017

1:30 PM: Our family retreats to the chapel on the third floor of the hospital. We have the little room to ourselves, which seems subdued and calm from the hustle and bustle of the ICU. As light softly pours through the stained glass window along one of the walls, we sit and talk about Drew and his diagnosis of FIRES and the worsening seizures. We cry and hug each other as we let our emotions pour out. Again, there was talk from the ICU doctors about palliative care and preparing for the worst, as children with FIRES generally have poor outcomes (10% to 30% mortality rate).

The possibility that we might lose Drew seems to be creeping ever closer. We talk about Drew fondly and what losing him would mean to our family, and with that uncertain future facing us, we feel hopeless and somewhat despondent. As we talk about the Savior, and temple blessings, and placing our trust in the Lord, we start to feel a sense of reassurance that all will be well in the end. We remind ourselves that Drew is still here with us and we resolve to act as such. Despite some of the grim news from some of the doctors, and their reports of poor outcomes and likely having to let “nature take its course,” we decide we need to focus on the positive side of the statistics and try to stay upbeat and encouraged, especially as we visit with Drew in his room. At the end of the afternoon, we emerge from the chapel feeling a sense of peace and a resolution to keep fighting alongside Drew to overcome this tribulation.

6:00 PM: Because FIRES is such a rare disorder, there is relatively little information on the World Wide Web about the prognosis or outcomes. However, that doesn’t stop Drew’s older sister from poring over the internet for the past 24 hours to learn everything she can about FIRES, and she shares some of the research with us. Many of the research articles reference two landmark studies from 2011 and 2014, and in those studies, they found that older children do better (average ages were 2 to 15 years old). Additionally, they found that 10% to 15% of survivors of the Acute Phase will have a full recovery, while another 18% to 20% will recover with only minimal impairment. Drew was very healthy and strong previously, he had no underlying health conditions, and we rushed Drew to the hospital within two hours of onset of his symptoms, so hopefully all of that will add up to a full recovery for Drew. Only time will tell, but first, he has to get through the Acute phase (the constant seizure phase) of the syndrome.

ICU Day #10 (Sunday, July 9th)

8:00 AM: The nurses spent the night walking a tightrope trying to balance Drew’s sedation, seizures, and blood pressure. As his blood pressure would drop, they would have to lighten his sedation, and then he would have seizures. Finally, about 1:00 AM, the doctors agreed to order a PICC line to improve his IV access and allow more medicines to run simultaneously. When the IV Team finishes the PICC line about 2:15 AM, the nurses then have two additional lines through which they can start some medications to better control his blood pressure in the hopes that the sedation can be a little stronger and improve the seizure suppression. In all, he ended up having 7 seizures last night, and 2 more this morning despite the sedation and other seizure medicines.

10:30 AM: While Alex and I drive home to shower, grab fresh clothes, and attend church, Dawn and Erin and Ashley stay at the hospital and have an in-depth discussion with the Neurology doctors. Erin has written a list of questions on the white board in the room, and the attending doctor patiently discusses each one, with the bulk of the questions simply asking to clarify the treatment plan for Drew going forward.

With the decision to start treating the FIRES last Friday, they started him on a high dose of IV steroids. When the final dose of steroids concludes on Monday (tomorrow), then they can begin a round of IV Immunoglobulin therapy over 3 days, as well as starting Drew on a Ketogenic diet. They also have him on 3 seizure medicines, to which they plan to add a fourth and continue to monitor their effectiveness. Finally, they plan to keep Drew in a medically induced coma for 2 to 3 days with the hopes of achieving “burst suppression,” or eliminating all seizure activity and allowing his brain to rest while all the medications catch up.

If nothing else gained from the long meeting with the Neurology doctors, we feel like there may be some hope after all. The Neurology doctors assure us that they plan to aggressively fight Drew’s seizures, and if these first few treatments fail, there are several others that they can use.

Drew after extubation and sedation with the hopes of achieving “burst suppression.”

9:30 PM: Doctors still not happy with his “burst suppression” because he is still having seizures despite the sedation. The doctors make more adjustments to try and fully suppress the seizure activity and get his brain to rest.

ICU Day #11 (Monday, July 10th)

8:30 AM: He had 8 seizures overnight despite the sedation with Propofol and Versed, so about 6:00 AM this morning, the doctors decided to switch his sedation medication to Pentobarbital with hopes of achieving true burst suppression (no seizures) for at least 48 hours. The Pentobarbital is a much stronger medication for sedation, but it also carries greater risk for damage to Drew’s heart, kidneys, and lungs, so they do not want to keep him on the Pentobarbital for more than a few days. Given the persistent seizure activity overnight, and the lack of full burst suppression, the doctors decide to keep him sedated until Wednesday morning. They want a full 48 hours on the Pentobarbital and then bring him out of the coma to see if his seizures have stopped.

8:30 PM: No seizures since switching to the heavy sedation under Pentobarbital this morning.

ICU Day #12 (Tuesday, July 11th)

8:30 AM: Drew had a quiet night with no seizures. More IV Immunoglobulin and more seizure medications today, including a new one called Onfi (Carboxapem). Hopefully no seizures when they bring him out of the coma tomorrow.

9:00 PM: Drew’s mother and I nervously pace the ICU hallway outside his room. We are hoping and praying so very hard that tomorrow will be full of good news and the seizures will have stopped. No word on when they will start lifting the sedation, but Drew has gone for about 38 hours without a seizure now. The doctors did warn us that if he starts having “a lot” of seizures again, they will have to put him back under the sedation for an additional 2 to 3 days as they continue to load him with the IV immunoglobulin and the several seizure medications. When we ask the Neurology doctors to clarify what they mean by “a lot,” they have difficulty specifying the exact threshold that would make them return Drew to the coma. They do finally say that ideally, Drew will have no more than 1 seizure per hour, and even 2 per hour would be considered a success.

In a way, it is like Christmas in July as we anxiously hope and pray to get Drew back. We know the medicines require time to work, but we are so hopeful that he will be past the seizure stage tomorrow and on his way to recovery.

The Acute Phase: The Downward Spiral

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 disease.

ICU Day #7 (Thursday, July 6th)

1:00 AM: Drew is surprisingly alert tonight between his seizures, although he continues to have slurred and delayed speech. They have him on two different medicines to try and control his seizures, but they seem to be having little effect. As his mother and I sit in the room with him, he holds his mom’s hand and says,”Mom, I have a confession to make.”

His mother smiles and asks, “Confession about what?”

“Well, Mom,” he continues. “I was going to wait and tell you at the end of the summer, but I felt I needed to let you know now. I hope you’re not mad at me.”

A look of worry flashes briefly across his mother’s face before she reassures him, “Drew, you can tell me anything, and I will always love you and be proud of you.”

“Well, you know my friend, M❤️❤️❤️❤️?”

“Yes,” his mother nods.

“Well, she is my girlfriend.”

His mother and I both smile at each other as she says, “We kind of suspected she was your girlfriend, Drew.”

“Yeah, so I know I’m not supposed to have a girlfriend, Mom, but I really like her a lot.”

“You should bring her around more so we can meet her,” his mother says as she strokes his hair. “If you feel really strongly about her, then you just have to promise me that you’ll respect her and treat her like a daughter of God.”

“I will, Mom,” Drew replies. “I promise I will never touch her or do anything wrong to her.” They continue to talk for quite a while about girlfriends and trusting each other more and making good choices.

3:30 AM: Drew continues to drift in and out of sleep between seizures when he asks me, “Dad, is M❤️❤️❤️❤️ still in the ICU Waiting Room?”

“No, Drew,” I reply. “It is the middle of the night and she had to go home to get some sleep.”

Drew’s mother and I take turns resting in the recliner in the corner of his room, so I have been holding Drew’s hand and watching over him for the last couple of hours.

“Hey, Dad? Can you read my cards to me again?” (Several friends and family members had brought him some cards last night). So I pull out the several “Get Well” cards and read them to him again as he drifts back to sleep.

Family hike, June 2017

7:30 AM: Drew has had 10 seizures since midnight, with 7 of them just since 4:00 AM. They had to give him some Ativan to help break the cycle when he has more than 3 seizures within one hour. They seem to be needing the Ativan more and more.

9:30 AM: The family has been reeling this past night with the possibility that all of this time Drew was simply battling a kidney infection. His brother spent some time working over the punching bag in the basement. His older sister stayed up late researching possible answers for this development. His mother and younger sister cried and worried and hoped. As we waited for the doctors, I had been speaking with the nurses and we agreed that the CT scan results did not add up to just a kidney infection, nor would a kidney infection account for all of his symptoms.

By the end of the morning, we had met with all three groups of doctors: ICU, Neurology, and Infectious Disease. All three of them agreed that Drew did not have an infection in his kidneys, but rather, signs of inflammation, which is much different. Several signs that he did not have an infection were normal urine, no fevers, the inflammation was spotty and affecting both kidneys equally, and he never had a bladder infection or complained of pain with urination or in his low back. Furthermore, all of his other signs and symptoms had been improving since Sunday, but his seizures, lethargy, and transient confusion had been worsening. With this information, the Neurology doctors were much more certain that these all pointed to an autoimmune encephalopathy, whereas, the ICU doctors were not quite ready to accept this as the diagnosis and still wanted to wait for a few more lab results and possibly perform some other tests. Additionally, they schedule another CT scan with contrast this afternoon to look a little more closely at the inflammation in his kidneys.

3:30 PM: His seizure activity seems to be slowly increasing as the day goes on, not so much in the intensity or duration of his seizures, but more in the frequency. The two seizure medications don’t seem to be slowing things down at all. His brother and sisters take advantage of periods between seizures when Drew is somewhat alert.

“Hey, Drewbie,” his brother says. “Do you want to listen to some music?”

“Sure,” Drew answers without opening his eyes.

Alex and his younger sister, Ashley, pull up songs on their phone and play them softly. Interestingly, they play one of his current favorite songs by Jon Bellion, but as he listens to it, he says it doesn’t sound right and he asks them to play the right song. They double check that it is the right song, and even pull it up on his phone and play it, and he still says it doesn’t sound right.

Later in the afternoon, he randomly starts to sing a Veggie Tales song: “We are the pirates,… We are the pirates, who don’t do anything….” We had been watching a video clip of the short song, “We are the Pirates Who Don’t Do Anything,” and for some reason he starts singing the first couple of lines to us. At times, he will preseverate on some words or requests, such as asking repeatedly for sips of water over and over again even though we give him some.

Alex playing some music for Drew.

8:45 PM: Three more groups of doctors were consulted today: Neprhology (kidney specialists), Oncology (cancer), and Rheumatology (they help to manage children with autoimmune disorders).   The CT scan with contrast was performed after Drew was sedated, and while he was out, the nurses started another IV.

The ICU doctors during evening rounds told us that the CT scan results came back this evening and showed that the inflammation in both kidneys had lessened and looked almost back to normal (again, not something you would expect from an infection). The Nephrology doctors did not see anything else wrong with his kidneys and signed off.

Seizure Count: approximately 20 seizures today; total of 32 seizures since Sunday.

ICU Day #8 (Friday, July 7th)

8:30 AM: The seizures contnue to become more and more frequent now, and to make matters worse, he requires help with his breathing nearly every time. Luckily most of the seizures last less than a minute, but the seizure medications do not seem to be helping.

Again, the ICU doctors are not entirely convinced yet as to the cause of Drew’s condition, but I lose my patience a little bit when they do their morning rounds.

“I can say that Drew is now doing worse than when I brought him in last Friday,” I say to the group of ICU doctors gathered in his room. “I know there are still a few lab tests pending, but could we please start doing more to treat and not continue to run tests?”

Fortunately, the Neurology doctors agree that further testing will not change our course of treatment at this point. The Neurology, Infectious Disease, Oncology, and Rheumatology doctors all feel very certain Drew has a type of autoimmune disorder causing his encephalopathy. Essentially, his immune system created antibodies about ten days ago to fight off the viral infection he had at home, but unfortunately, the antibodies started attacking the tissues in Drew’s brain and kidneys as well, which caused the encephalopathy. The doctors plan to start Drew on some high-dose steroids today and switch out one of his seizure medications to try a fourth medicine in an effort to get his seizures under control.

11:00 PM: It has been a rough day. Drew is up to 33 seizures in the last 24 hours. He really hasn’t been awake much today or spoken to us beyond groaning. Based upon the results they have, we finally hear a name for what type of autoimmune encephalopathy that they believe Drew is fighting — it is called FIRES, which stands for Febrile Infection-Related Epileptic Syndrome. The ICU doctors give my wife a hug as they talk about this suspected diagnosis. They tell us that outcomes are generally poor, and that they may request a visit tomorrow with the palliative care team. As we scramble to look up information on FIRES, there is not a lot of information about this rare disorder, but one thing that is clear: up to 30% of children with this syndrome will die, and right now things appear to be pretty grim for Drew.

Seizure Count: 33 seizures today, 65 seizures total since Sunday.

The Acute Phase: Seizure, Sleep, Repeat

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 #4 (Monday, July 3rd)

12:30 AM: The doctors ordered a stat CT scan following the first seizure. Unfortunately, Drew had become lethargic and confused and was refusing to lie on his back or hold still for the CT scan. Despite the efforts of four nurses and I trying to position Drew, he becomes increasingly combative and ultimately receives doses of Benadryl, Ativan, and Haldol without effect, so one of the ICU doctors has to come down to Radiology and sedate Drew with Propofol to get him to hold still. Fortunately, the CT scan results come back a short time later as normal, with no evidence of any bleeding, tumors, or structural changes that would explain the new seizure.

8:00 AM: Surprisingly, Drew is quite lucid this morning. He is able to complete a fairly lengthy neurology exam for both the ICU doctors, and then again with the Neurology doctors. He remembers the date, that he is in Primary Children’s Hospital, the year, and even that Trump is the President of the United States. He complains of having “pain all over,” and his speech is still slurred and slightly delayed. Later, his uncle would also surmise that he also gets pain all over when he remembers Trump is President. The doctors assure us that most children with encephalopathy will have seizures, so they are not surprised, but they plan to repeat his lumbar puncture this afternoon and obtain more samples to expand their search for the virus or other causative agent.

Noon: Drew has his second seizure (first of the day). This seizure is also a Grand Mal, but it only lasts about 60 seconds and does not require any Ativan to help it stop.

Me and Drew, Scout Camp 2016, Grand Teton

8:00 PM: The lumbar puncture went well and similar to before, the preliminary results show no infectious agent. There is a slight rise in his blood cell count in the spinal fluid, but the total count still falls within normal limits. They plan to send samples to California (to test for anti-NMDA) and the Mayo Clinic in Minnesota to test for more auto-immune markers in addition to expanded panels for viruses, heavy metals, toxicology screens, and other possible infectious agents that might have been missed from the first lumbar puncture. Drew is not as alert as yesterday, and we only have been helping him sit on the edge of the bed to urinate (instead of trying to stand again) because of the fear that he may have a seizure while standing and hurt himself.

Seizure Count: Only 1 seizure today, but he was sedated for much of the afternoon while he had another lumbar puncture and IV placement.

ICU Day #5 (Tuesday, July 4th)

4:00 PM:  Drew’s mother and I run home to do some laundry and pack a fresh set of clothes. We return to the hospital just in time to see Drew have another seizure (his second seizure of the day). This one only lasted about 60 seconds and was a “focal” seizure. Basically, the focal seizures have been limited to his eyes, mouth, and breathing.

8:30 PM: Unfortunately, Drew just had his third seizure of the day. Drew’s mother and I have discussed possibly walking to a window or outside the hospital to take advantage of the spectacular view from the hospital (situated up on the East bench of the Salt Lake Valley) and watch fireworks, but instead, we sit by Drew nervously hoping his seizures are finished for the day. Although his seizures are now more focal in nature and somewhat self-limiting, the problem with them is that he has stopped breathing each time. The nurses have to assist his breathing and sometimes I help by performing jaw thrusts to better open his airway while the nurses hold an oxygen mask over his mouth and nose. The nurse explains that if he was not in the ICU, they would have to call a “Code Blue” each time he stops breathing, and then all the ICU staff would come running to his room to assist. So the doctors plan to keep Drew in the ICU another night.

Seizure Count: Three seizures today; 5 seizures total to date.

ICU Day #6 (Wednesday, July 5th)

9:00 AM: Drew had three more seizures overnight. Despite the increasing seizures, at this point, he continues to be lucid part of the time. The doctors allow him to start some ice chips, but they also placed a feeding tube on Monday while he was sedated so that he can start getting some nutrition (he hasn’t really eaten solid food since last Wednesday).

At this point, Drew now has three groups of doctors working on him: ICU, Neurology, and Infectious Disease. For the next few days, the doctors seem to disagree on the next steps because all of the lab work and tests from the second lumbar puncture have come back negative. West Nile virus is negative. Both Herpes viruses are negative. Bacterial Meningitis is negative again. Toxicology screen, heavy metals, fungi, and all other infectious agents are negative. All other viruses negative except for 7 more pending and the Mayo Clinic still pending. The Anti-NMDA from California also came back negative.

The Neurology doctors now feel it is most likely autoimmune in nature, and the next step is to determine if the trigger was a tumor or a virus. They plan to do an ultrasound and another CT scan this afternoon with contrast to look for any tumors in Drew’s chest, abdomen, and pelvis. Drew overhears the word cancer, and he starts to get really worried despite our reassurances. The plan is to now add a fourth set of doctors who specialize in oncology (cancer).

Drew hugging his brother

The ICU doctors on the other hand are still not ready to focus on only an autoimmune disorder and feel more work-up is needed to rule out additional drugs or poisons. The ICU attending doctor steps into Drew’s room and bluntly confronts Drew’s mother and me.

“With all the tests and lab work coming back negative for any infectious agents, we feel like we need to consider the fact that your son may have used some drugs,” she said.

We stand there shocked and dumbfounded that they are bringing this up again. We have already told them multiple times he has never used drugs, all of his toxicology screens have come back negative, and the doctors in the ED even gave him some Narcan to make sure his altered mental status was not due to narcotic use (it wasn’t).

The doctor continues, “You look like you have a question for me?”

“No,” his mother says, “I’m just trying to process what you said.”

In reality, Drew’s mother was using every ounce of her being to not scream in the doctor’s face. Instead, as soon as the doctors leave, we go out to our car. We sit in the parking garage and Drew’s mother screams and cries and screams as she repeatedly slams her hands on the steering wheel.

“How can they keep accusing our son of this?” She yells. “How many more things do they have to rule out before they actually start treating him?”

2:00 PM: Drew is resting in bed with his eyes closed. Dawn’s mother and sisters have gone home for the day to catch up on the laundry and chores. We have decided that either his brother or myself should stay at the hospital to help Drew urinate or keep him calm. Drew is actually much bigger than most of the nurses and a few of them are hesitant to help him out of bed.

Out of the blue, Drew asks, “Can we have a prayer?”

“Sure,” I said. “Would you like to say it or would you like me to say it?”

Drew surprises me again when he says, “I’ll say it.”

Drew starts, “Heavenly Father…, Please bless me to feel better…. Please bless the seizures to stop…”

He pauses between each request, and a couple of times I wonder if he has fallen asleep. However, he continues by repeating the same two lines again. He pauses for a long time again, and I wonder if he forgot what next to say, so I prompt him,”In the name of Jesus Christ, Amen?”

Drew answers, “No, Dad, I’m not finished.” He then repeats the same two lines for a third time, but then he adds, “Please bless the doctors. In the name of Jesus Christ, Amen.”

Drew hugging his older sister

8:00 PM: Drew returns from the CT scan, and this time, he didn’t even need to be sedated. He was struggling to stay still on his back, but it only lasted for a few minutes. The worst part was the contrast shooting through his IVs, which are really chewing up his veins in his hands and wrist.

Initially, they thought they would transfer him out of the ICU this evening, but he has had 4 more seizures today and the doctors feel like they better keep an eye on him one more night. They also talked about letting him start some broth, but he is so tired and sleepy after the CT scan, he cannot attempt any liquids at this point.

As the doctors come around for evening rounds, Drew asks, “So do I have cancer?”

“Ultrasound and CT scan results are negative for any tumors, so you don’t have cancer,” the ICU resident explains. “However, it looks like you may have an infection in your kidneys, so we need to review some of your tests and see if this is why you have been sick.”

Drew starts to cry as he says, “I don’t have cancer.” We’re all relieved, but still a little frustrated as it seems we are no closer to an answer as to what is causing Drew’s symptoms.

Once the doctors leave Drew’s room, his mother again tries very hard not to scream as she begins to cry. She turns to me and asks, “Are they saying all of this might just be due to a kidney infection?” She pounds her fists on my chest, “Why did they do all these tests to my son for just a kidney infection?”

Unfortunately, we find out the next day that Drew did not simply have a kidney infection, which would have been much easier to treat, but these CT scan results of his kidneys did confirm Neurology’s diagnosis.

Seizure Count: Seven seizures today; Twelve seizures total.

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.”

Drew resting, 7/2/17.

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.

Drew talking with his mother about 1 hour pre-seizure

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.