It All Started With A Fever, Part 9

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.

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.

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.

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.

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