It All Started With A Fever, Part 16

The Acute Phase: First Rays of Light

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

ICU Day #43 (Friday, August 11th)

6:00 AM: Drew seems to be about the same this morning, meaning nearly-continuous Focal seizures affecting primarily his eyes and mouth. In fact, he had seizures most of the night even though they gave him Ativan twice to try and stop them. His heart rate has been over 100 and he has been hyperventilating despite the doctors turning the ventilator settings down twice. He is essentially breathing over the ventilator settings. Strange thing is last night he finally went into ketosis from the Ketogenic diet, which means it may finally start to work. The nurse gave Drew all of his oral medications through his feeding tube a little early this morning, and then she had to turn off the feeding tube just now in preparation for the surgery later today.

10:00 AM: Drew squeezed the Neurology doctor’s  hand on command! The doctor actually tried once without success at the beginning of his examination, but Drew was mid-seizure. A few minutes later, the Neurology Fellow saw Drew break out of his seizure and told the attending Neurology doctor to try again when Drew was more awake. Sure enough — Drew was able to squeeze the doctor’s hand. His left hand is stronger than his right hand at this point. The Neurology attending doctor also said Drew’s EEG looks better than last week, but obviously still has a ways to go.

Before the Neurology doctors finished their rounds, I asked, “So now that the Ketogenic diet finally started to kick in, how long will it take until we see the diet possibly decrease his seizure activity?”

“For smaller children, it usually takes 2 or 3 days,” the Neurology Dietitian explained, “but for adults and teens as big as Drew, it may take up to a week to really have an impact.”

11:30 AM: Dawn cannot sit — she nervously paces the room back and forth while wringing her hands. We watch the nurses and respiratory therapists connect Drew to portable machines and monitors that they will use as they transport him down the hall from the ICU to the operating room. When we arrive in the holding area, the surgeons and anesthesiologist review the procedure and make final preparations. Finally, as they push Drew’s bed away toward the operating room, the nurse escorts Dawn and me to the exit, telling us to go grab lunch and be back to Drew’s room in about an hour.

2:15 PM: Dawn barely touched her lunch. Some neighbors kindly brought us fried chicken and we sat and visited with them while we ate, although Dawn was visibly shaking with worry throughout the meal. We returned to Drew’s room a bit after 1:00, and a short while later the surgeon came and told us everything went very well. Finally, the rest of the nurses and respiratory therapists rolled Drew back into his ICU room about 30 minutes ago, and we sat and listened as the surgeons and anesthesiologists reported back to the ICU doctors the procedure, interventions, and orders. The doctors didn’t want to pull the breathing tube out of his mouth until after he returned to his ICU room. Once they had Drew hooked back up to the machines and monitors in his room, they pulled his breathing tube out of his mouth. At the base of his throat, the shiny, white tracheostomy tube protrudes about a half inch, surrounded by a white cuff and secured with a soft-tie collar around his neck. Despite the commotion and noise, Drew is still quite sleepy from the anesthesia and he appears the most restful since he came out of the Pentobarbital coma. I wish his mother could feel so restful, but at least she appears somewhat relieved that the surgery is finished and all went well (and honestly, I felt the same anxiousness on the inside even though I might not have showed it on the outside).

11:00 PM: Drew has been doing a little better tonight. He has slowly been moving his arms and hands a tiny bit and trying to follow more with his eyes in between seizures. A big change this evening is that now that the breathing tube is gone from his mouth, he has started to make some facial expressions, but the facial expressions tonight have been more sorrowful as it appears he has been having some pain from his surgery. With the lights dimmed, I have been sitting at his bedside, holding his hand, and we are listening to the Lord of the Rings soundtrack until some pain medicine kicks in. Overall, seems like we saw some positive changes today.

Drew ready for CHHS Homecoming 2016.

ICU Day #44 (Saturday, August 12th)

12:30 AM: Well, he just threw up a little bit of blood and Ketogenic diet about an hour ago — not a lot, just a little bit. However, the remarkable thing was that he knew it was coming and he tried as hard as he could to turn all the way over onto his right side. He lifted his left arm way up off of his body and seemed to be reaching for the bed rail and trying to turn his trunk when he moved just enough in time for the emesis. We got him cleaned up and the nurse suctioned his mouth and throat. I have to chuckle as he glides his tongue around his mouth and along his teeth, and at one point, I thought it looked like he might be trying to talk, but of course he couldn’t and I tried to explain to him why. Starting to run a little temp despite the Motrin and Tylenol, so we’re going to use some ice packs to help cool him down.

8:00 AM: The Neurology resident came by for pre-rounding and I asked her about Drew’s eyes and the difficulty he is having tracking or looking at anything. She said it is because he is still having focal seizures, and when they occur in the frontal lobes of the brain, his eyes will deviate up and away from the side having the seizure. So some evidence that there are still some seizures going on at least sub-clinically. She also said that the plan is to leave the EEG off until tomorrow afternoon, so we can go ahead and wash his hair today.

10:15 AM: As I sat next to his bedside, Drew’s eyelids flew open and his eyes rolled upward and started to shake rapidly back and forth. This was followed by his mouth twisting and twitching, and rapidly his whole body started to convulse and shake up and down on the bed. He hadn’t had a General Tonic-Clonic seizure (formerly known as Grand Mal seizures) for a few weeks now. I hollered for the nurse and he came running into the room. Luckily, the GTC seizure only lasted about 45 seconds.

11:05 AM: Unfortunately we have not yet washed Drew’s hair because he proceeded to have a cluster of five GTC seizures about every 10 minutes apart, but they were able to rush and get him some Ativan just as the 5th one started, and it seems to have finally broken the cycle. The doctors ordered a check on his Phenobarbital level, and they also said that they may give him some pain medicine, as both of those may have lowered his seizure threshold. The ICU doctors just finished rounding, and they are going to do breathing trials (taking Drew off the ventilator, or breathing machine, and having him breathe on his own) every 6 hours — the first one started early this morning and he did very well. Again, if we can just get the seizures to stop, I think he would be doing awesome.

2:30 PMDrew just “talked” to Dawn. I was helping the nurse to re-position Drew In his bed and I noticed he was looking at me most of the time. So Dawn came around the bed to talk to him, and he got this scowl on his face.

“Are you angry, Drew?” Dawn asked.

As we watched him, it appeared that Drew mouthed the word, “yes.” With tracheostomy, he can’t actually speak, but it sure looked like he moved his lips and tried to say something.

“Did he just say ‘yes’?” Dawn turned to see if we had been watching.

Drew’s sister and I nodded, and she said, “Yeah, it looks like he just said ‘yes.'”

Now the nurse was watching as he worked on the IV tubing.

Dawn leaned in closer and asked, “Drew, are  you hurting? Do you need some pain medicine?”

As everyone in the room watched, Drew nodded his head and clearly mouthed the word “Yes” again.

“That works for me,” his nurse said.

Drew’s sister started jumping up and down, shouting and pumping her fist in the air as tears streamed down her cheeks. Dawn and I started hugging each other as we shook our heads in disbelief. For the first time in more than 5 weeks, Drew had finally been able to say something to us!

6:00 PM: Kind of a busy afternoon. After Drew got some pain medicine, his mom and sister washed his hair and tried to get all the EEG glue out of it. We had been nervous with the new tracheostomy to not get any water near his surgery site, but the nurse helped them to tip the bed down and use a basin to catch the water.

Since Drew seemed to be a little more awake today, his mother thought it might be good to let his girlfriend see him for the first time since he had been admitted to the ICU 6 weeks ago.

“When you and I were dating, back before we were married,” his mother said. “If you had been sick in the hospital, I would have worried myself sick, and it would have meant a lot to me to be able to visit you and see you. If we can wash his hair, I think the visit might be good for both of them.”

M❤️❤️❤️❤️ and her parents were planning to visit Drew this afternoon, so I texted her, “If you would like, I could take you to see Drew in the ICU today?”

She replied almost immediately, “I would love to see him. Thank you.”

Once she arrived with her parents, I walked M❤️❤️❤️❤️ back into the ICU as Drew’s mother and sister walked out. At first, the many monitors and tubes and machines appeared to intimidate and overwhelm her, so I explained them to her and tried to help allay her fears.

As she tentatively approached the bed, she put on some latex gloves and then grabbed Drew’s hand. I pulled up a chair behind her and helped her to sit down next to his bed.

“Let me know when you’re ready to leave, and I will help you find your way out of the ICU.” She nodded without looking away from Drew.

Two and a half hours later, she reluctantly let go of his hand and I helped her find her way back to her parents who were waiting upstairs in the McDonald’s room with the rest of our family.

Drew’s mother and older sister washing his hair.

ICU Day #45 (Sunday, August 13th)

4:15 AM: I awoke to the sound of the nurse calling the ICU doctor on her Vocera communication device, “Drew just had another General Tonic-Clonic seizure that lasted about 40 seconds.”

5:05 AM: I sat and watched as Drew had another cluster of 4 GTC seizures about every 10 minutes apart again, each lasting less than 45 seconds. The nurse was able to give him 2 mg of Ativan and it broke the cycle.

8:30 AM: The Neurology doctors plan to adjust some of Drew’s anti-seizure medicines and he continues to have 1+ ketones in his urine, so they are hopeful something can cut the seizures and control them better. For now, the doctors plan to tweak the doses and keep Drew on the 7 anti-seizure medicines he is currently taking: Onfi, Vimpat, Perampanel, Phenobarbital, CBD oil, Anakinra, and Topirimate, as well as the Ketogenic diet.

10:30 AM: The Respiratory therapists had to put Drew back on the ventilator. He was working too hard and his heart rate wouldn’t come down. He actually went about 24 hours with just an oxygen mask over his tracheostomy and was breathing on his own, but he definitely needs a break now. Hopefully he can calm down and not seize quite as much. One positive note is that the ICU doctors decided to remove Drew’s PICC line and convert the last of his medications to oral form through his feeding tube. He now only has one IV left for emergency medications, such as the Ativan.

6:30 PM: So after talking to us yesterday, it seems like overall Drew had a step backward today. He had another cluster of 8 GTC seizures from 1:45 to 2:35 this afternoon, and his heart rate has been really high all day. The doctors decided to put him back on the ventilator to help him not work so hard, and they have been giving him Ativan and a bolus of phenobarbital to try and stop his seizures. The doctors put the EEG back on for an hour this afternoon, and he was having Focal seizures the entire time. The doctors also plan to give Drew some pain medicine for his tracheostomy because it still seems really sensitive whenever the nurses have to suction his secretions. Pain and fatigue can lower the seizure threshold, and he certainly seems to be fatigued and in pain this evening.

11:00 PM: Drew has been a lot more comfortable with the pain pill on board and is not agitated or twitching his hands or mouth as much. For a while he was kind of awake and not seizing and listening to me tell him about some of the cousins and about church today. I then told him he was having seizures because of the virus he had, and now the virus is gone, the doctors are trying to get the seizures to stop, so none of this was his fault. It might have been my imagination, but it looked like he then mouthed the words, “I know.” A few minutes later he fell asleep. More and more it seems that the tracheostomy was really bothering him today.

ICU Day #46 (Monday, August 14th)

8:00 PM: Kind of neutral day today for Drew — not really much changing. On a positive note, he had no more General Tonic Clonic seizures today after the doctors made a couple of adjustments to his medicines, but he continues to have a lot of Focal seizures which make his mouth and eyes kind of hard to control. They gave him some pain medicine again this morning, and so he has been less agitated today and more comfortable, but that also meant less movement. Finally this evening, he seems to be looking with his eyes and listening to us talk a little more again. Hopefully the medicines will continue to diminish the seizures more and more each day. His feeding tube clogged this evening and it took them three tries to get it replaced, but it was critical because all of his medications are now given through the feeding tube.

Preparing and serving lunch in the McDonalds room.

ICU Day #47 (Tuesday, August 15th)

7:30 AM: Drew actually looks peaceful as he sleeps. The nurse said Drew had a much better night and last night was the first night she hadn’t needed to tape his eyelids shut because he seemed to have fewer seizures. He really looks like he is just sleeping right now. For a minute, I thought he looked like the old Drew again, just with longer hair and a scruffy beard.

2:00 PM: Some of the Young Women and their leaders from our church came up to the hospital and prepared and served lunch in the McDonald’s room. I was at work and unable to attend, but the rest of the family said it was delicious and a wonderful break from the hospital cafeteria.

Dawn and the Young Women leaders

9:00 PM: Another kind of neutral day for Drew. No GTC seizures and overall it seems he has had fewer focal seizures, but still several per hour. The medications appear to be cutting down on the seizures but he may be a little too sedated as a result. There were times during the day where he seemed to be able to follow with his eyes a little bit, but he has struggled to follow any commands. He really hasn’t mouthed any more words to us the last 2 days. So kind of a mixed bag, but so long as the seizures continue to abate and be more controlled, we hope that Drew will have longer stretches of alertness and start to be able to move and recover.

Dawn hugging and thanking a few of the Young Women.

family, FIRES

It All Started With A Fever, Part 15

The Acute Phase: The Darkness Before the Dawn

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

ICU Day #40 (Tuesday, August 8th) — A Decent Day

4:30 AM: The nurse just finished giving Drew his second round of Anakinra shots (4 shots each time). I held his hand because the shots seem to be pretty painful and sting even though they are only subcutaneous injections. The first shot, Drew didn’t really flinch, because I think he was sleeping, but then he woke up and the last 3 shots he was moving his left arm and hand quite a bit, reacting and trying to withdraw from the pain. Respiratory Therapy had to come re-tape his breathing tube again a couple of hours ago, and it looks better now. It is strange to think that this 12-inch, plastic tube dips all the way down into Drew’s lungs to help him breath, and the primary anchor is simply a couple of long pieces of tape along Drew’s upper lip and  cheeks. It is no wonder they need to re-secure the tape every few days.

10:00 AM: ICU and Neurology doctors both finished rounding, and they agreed starting today to try the Ketogenic diet one more time. The Ketogenic diet is high fat, low carb and low protein, but for reasons unknown, about 1/3 of kids on this diet see a 50% reduction in their number of seizures. For Drew, he will be on a ratio of 4.5 fats for every 1 carbohydrate and protein combined (it is all liquid in his feeding tube anyway). However, because he has developed a pressure sore on his sacrum (the bottom of his back), they are only going to try for 7 days and if the diet doesn’t kick in and help, they will switch him back to a regular diet to get more protein and heal his pressure sore more quickly. At this point, the concern to stop the seizures outweighs the concern over the pressure sore, and they will try to keep Drew on his sides more than his back to keep pressure off his wound.

One other development is that it looks like he got a little too much phenobarbital yesterday, so Drew may be really sleepy most of the day today. His phenobarbital level this morning was 93, which is pretty high. They were hoping to get him between 60 and 70 the next couple of days while the Anakinra shots had a chance to take effect, but they overshot a little and will have to hold his phenobarbital dose for today. His blood pressure and breathing and labs are all good this morning. In fact, he just looks like he is resting peacefully for the first time since coming out of the last Pentobarbital coma. The Respiratory Therapists are even giving him a break from the bite block to let his lips get a rest. The Neurology doctors also said as they were looking at his EEG from yesterday morning, they were hesitantly optimistic and the EEG seems to look pretty good today so far, but it could be the phenobarbital overdose. To their credit, the Neurology doctors seem to be a little more positive in their assessments and recommendations.

3:30 PM: Occupational therapy worked with Drew this afternoon, and because of his pressure sore on his sacrum, she wasn’t able to get him up to the cardiac chair again, but she did stretch both of his arms. Interestingly, when the therapist was stretching his right arm above his head, he actively tried to push it down she said. And then later today he was feeling the breathing tube with his tongue then reached up his right hand to his chest. It is nice to see that he is starting to move his arms and hands a tiny bit more today.

Christmas Eve, 2015

ICU Day #41 (Wednesday, August 9th) — A Not-so-decent Day

8:00 AM: Drew seems about the same this morning. I helped the nurses roll him and reposition him at 2:00 AM and 7:30 AM, and I got a good look at the wound on his sacrum. I can see why they are worried because there is one spot that the Wound Nurses said may go all the way to his bone. Each time we rolled Drew and changed his position in bed, the nurses carefully cleaned the wound and applied new bandages. He also has small pressure sores starting to develop at the base of his left toe and along the crest of his left shoulder blade, so they put bandages on those spots as well.

He has been moving his arms and hands a little bit more today, but not on command and he still can’t really follow any directions. I also woke up and helped comfort Drew while the nurses gave him his Anakinra shots at 4:00 AM. Reading the numbers again on that study about the Anakinra and they are a little misleading about the response rate, but the Rheumatology doctor said that given the significant seizure activity Drew has been having, they thought it would take at least 3 to 5 days on the Anakinra to hopefully start seeing some improvement.

4:00 PM: After a lot of thought, research, discussion, and prayer, we have agreed to proceed with tracheostomy surgery for Drew. He will have been intubated 5 weeks tomorrow, and it looks like he will need ventilator support for at least another 2 weeks or more. For pediatric patients, they really don’t like going beyond a month with the breathing tube in their mouth and they try to switch them to a tracheostomy so the breathing tube comes out of the base of their throat. As we watch him have seizure after seizure, he continues to chew and gnaw on the breathing tube and is causing sores on his lips. We are also worried about the impact on his teeth, tongue, and vocal cords as the plastic breathing tube rubs and irritates and starts to cause inflammation and damage. After reading up on it and discussing it, Dawn and I agreed that it will be best to have the surgery and switch him to the tracheostomy as he continues to battle these seizures. However, Drew’s brother and sisters are not entirely convinced yet and are a little worried about seeing their brother with a tube sticking out of his throat.

6:00 PM:This afternoon, he really seems to be having a ton more seizures, most likely as his Phenobarbital levels come back down into a safer range. The nurses gave him Ativan twice this afternoon to try and break up some myoclonic-type seizures, and they seemed to work temporarily, but only after a delayed response (one shot took 45 minutes before it seemed his seizures slowed down). His EEG has remained about the same since Monday, with usually 10 to 12 bursts per screen interspersed between frequent seizures every 5 to 10 minutes. He hasn’t been able to track with his eyes much at all today. On a positive note, they should have the CBD oil here tomorrow to start with Drew. We are just barely 49 hours into the Anakinra, but we’re sure hoping it will have an effect soon, because so far it doesn’t seem to be making a dent in the seizures.

7:00 PM: Drew 2, Nurses 0. He just peed all over his nurse twice. At first, he was peeing past the Foley catheter — weird because he still had the catheter, but he was peeing around it. So she took the catheter out because the doctors wanted to discontinue it anyway, and a couple of minutes later, we were surprised when Niagara Falls broke loose all over the poor nurse’s scrubs. In seriousness, this is the first time his bladder has been able to relax enough to urinate since he first arrived at the hospital over 5 weeks ago, so we’re hoping this is a really good sign that his body is slowly returning to normal.

10:00 PM: So even though his EEG is still a mess, and he has had a lot more seizure activity today, Drew has been reacting and moving the most tonight than he has all day. Just now as we turned him onto his right side, we tried to cross his left leg over, and he slowly pulled it back straight — his leg!! He also moved his right arm twice to cover his abdomen as his nurse was trying to give him his Lovenox shot (for blood clots). He seemed to scowl at the nurse when she washed his face. The nurse also noticed he has been flaring his nostrils and seems to be moving his eyebrows more. Hoping and praying for more tomorrow, but a few more little victories tonight after a long, hard day full of seizures.

11:00 PM: I just finished putting lotion on Drew’s hands and feet, and talking to him the whole time. He had one big seizure for sure, but the rest of the time he seemed very calm and quiet, and I swear a couple of times he tried to squeeze my fingers when I asked him. I told him good night and gave him a kiss on his forehead.

Ugly EEG screen during one of Drew’s seizures.

ICU Day #42 (Thursday, August 10th) — A Bad Day

8:30 AM: Drew’s EEG looks pretty bad this morning. As I look at him in bed, he seems to be sleeping and all the seizure activity would seem to be sub-clinical and not readily apparent. However, the Neurology team has a doctor who remotely monitors all of the EEG patterns around the clock, and Drew’s EEG was bad enough this morning that the Neurology doctor telephoned in to the nurses and ordered a 4 mg dose of Ativan this morning to try and quiet his EEG activity down.

1:30 PM: Drew loves Music Therapy. Today was the third day that the therapist came to his bedside with her guitar and she gently sang to him. You can tell he enjoys it because his heart rate and breathing will slow down, and during the session today, it seemed to be the first time he has rested all day with all of his seizures.

3:30 PM: “This is so stupid,” Drew’s brother says as he reads through the research article on the Anakinra. “Why is it not working on Drew?”

“I think it is working, but we need to give it more time,” I try to calm him down.

“It’s been three days now, so why is it not working?”

“You have to remember how bad his seizures have been and they said it will take a little longer than the girl in the case study,” I answered. “She was only having about 6 to 8 seizures per DAY, while Drew has been having at least 6 to 8 seizures per HOUR.”

“Well, it’s stupid that it is taking so long,” his brother answered. “The Sage 547 — it’s supposed to work on 77% of patients, but it didn’t on Drew. Ketogenic diet — supposed to help decrease 50% of the seizures, but not on Drew. All this plasmapheresis and medicines — nothing is working on Drew. Why is nothing working? Why is he not getting better?”

“He is getting better, but they just need more time,” I tried to reassure him. “We all want Drew to get better, and he will. You need to hang in there just as much as Drew.”

He just shook his head and threw the research article back down on the bedside table. “I don’t think I want to go to the Family Conference this afternoon,” Drew’s brother said. “I’m not in the mood.”

I turned and looked him in the eye, “Of anyone in the family right now, you need the Family Conference meeting the most, and you need to be there.”

5:30 PM: We just finished the Family Conference with the Rainbow Kids Team at Primary Children’s Hospital. They help families to cope with illness and prolonged hospitalizations, and the last several days the team of doctors, social workers, nurses, and chaplains have been visiting our family and helping us. They suggested the conference prior to Drew’s tracheostomy surgery, and I quickly agreed as the family certainly needed to talk through some of our feelings and worries.

For most of the conference, Drew’s brother and sisters sat silently contemplating the comments and feelings being expressed mostly by Dawn and myself. I tried to be quiet and give them a chance to answer as much as I could, but I couldn’t help it with what was probably the hardest question.

“What is the one thing you fear most about Drew’s illness?” One of the Rainbow Team members asked.

Silence. I sat there patiently waiting for someone to speak until I could not take it any more, so I answered, “I hope it is OK, but I think as we have been talking as a family that the biggest fear we have is that Drew will never come back to us… that he will never get better and never be the same again….”

The Rainbow Team looked at each of the family and asked, “Is this how you feel also?”

The kids each nodded yes, but Dawn added with tears in her eyes, “One of the most frustrating thing about all of this is that nobody can tell us if he will get better or not. Nobody knows how much he will recover. It’s just a big guessing game, and it’s frustrating.”

“That can be a hard thing — the unknown,” the Rainbow Team Fellow said. Silence settled again around the table as everyone reflected on this hard thing, but I felt instead that we did know some of the possible outcomes.

“I think we do have a little better idea now than we did six weeks ago,” I said. “At the very least, Drew comes home to us just like he is now. He might always have seizures and never be able to walk or talk again, but we would still love him and care for him and help him to be as happy as possible. However, I am not yet ready in the slightest to give up hope that these new medicines and treatments will have an impact on his seizures. I believe he will make some more improvement, and even if he is not exactly the same as before, at least we will still have him with us.”

8:30 PM: I asked Alex to help me anoint Drew and give him a blessing ahead of his tracheostomy surgery that is scheduled for tomorrow at Noon.

11:00 PM: Despite my enthusiastic speech in the Family Conference this afternoon, a feeling of dread has enveloped me. All of the frustrations and fears have descended upon me like a lead weight, and I am having difficulty as I sit and watch his EEG screen tonight. Drew seems to have been a lot worse today, having nearly constant seizures, despite all the new medications. Just tonight, he seems to have had a seizure that lasted for 90 minutes or more, both on his EEG as well as with his eyes and mouth. The ICU doctors rounded just now and agreed to try a shot of Ativan even though they aren’t sure it will help. CBD oil started today and now 72 hours into the Anakinra, but still nothing helping. He is scheduled to have surgery tomorrow at Noon for placement of a tracheostomy, and just in time as he started getting another sore on his lip today. As I lay there on the recliner next to his bed, I listen to the hum of the ventilator, the clicking of his feeding pump, and the many sounds from his SCD pump, the air mattress motor, and the IV machines. But one thing I don’t hear is any sound from Drew, who continues to have seizure after seizure after seizure. I hope something helps soon, but I feel my hope slowly slipping away.

Drew loves movies, and some of his favorites are the Lord of the Rings movies. My favorite of all the great quotes from those movies happens near the end of second movie, The Two Towers, as the two hobbits, Frodo and Sam, despair after narrowly escaping capture by Sauron’s minions. Frodo has been tasked with traveling to Mordor to destroy the One Ring, and Sam is his best friend and trusty companion who volunteered to help him. However, in light of the seemingly impossible quest still stretching out before them, Frodo begins to lose hope…

Frodo: I can’t do this, Sam.
Sam: I know. It’s all wrong. By rights we shouldn’t even be here. But we are. It’s like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn’t want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it’s only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn’t. They kept going. Because they were holding on to something.
Frodo: What are we holding onto, Sam?
Sam: That there’s some good in this world, Mr. Frodo… and it’s worth fighting for.

I suppose that at this very moment, I feel just like Frodo. After all of the dissapointments and hopes and emotions the last few weeks, it seems like we will never get out from under the FIRES shadow. How can our family ever go back to the way it was when so much bad has happened? And do I want to know the end, because what if it isn’t happy? I don’t really think we can turn back with Drew, but it just seems like this darkness will stretch on forever.

family, FIRES

It All Started With A Fever, Part 14

The Acute Phase: Auto-Immune versus Auto-Inflammatory

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 #37 (Saturday, August 5th)

7:00 AM: Not much change with Drew overnight, but we have had a few flickers of hope, which means he has started to open his eyes a little bit again. Continues to have frequent seizures (anywhere from 8 to 15 per hour) with a few periods where his eyes are open, but he is unable to follow commands and he has no real recognition of self or his surroundings. He did have a couple of left elbow twitches this morning, some random, spontaneous, muscle twitches, but not consistent or repeatable.

3:00 PM: The fifth plasmapheresis treatment just finished. They are loading him up with some Benadryl and Tylenol in preparation for starting the IVig because it often causes a little bit of a bump in temperature and rash. The doctors also decided to add a fifth anti-seizure medicine named Topirimate in hopes of breaking his seizures, and they are also re-dosing all of his other anti-seizure medicines right now to replenish them in his system after the plasmapheresis washed them out.

Drew and Alex, October 2016

10:30 PM: About 30 minutes ago, Drew had a Grand Mal seizure, which is his first grand mal since the very first week. Ironically, it happened while the ICU doctors were doing evening rounds, so I was standing near the doorway to his room when I saw it start. At first I thought he was reaching his right hand up to pull out his breathing tube, but then I realized it was a big seizure. His head was repeatedly turning to the right side and his right arm was jerking up and down. I hollered at the nurses and doctors, and by the time I ran over to his side, the seizure had stopped, so it lasted less than 20 seconds or so. Initially, I was excited to see some movement, but when I realized it was a Grand Mal seizure, I was worried all over again that things were getting worse, not better.

ICU Day #38 (Sunday, August 6th)

10:30 AM: Drew had another Grand Mal seizure this morning (second in the last 12 hours). The Neurology doctors just finished rounds and told us that despite all the medications and treatments, Drew is still nearly constantly having seizures. They’re going to give him one or two big doses of a sixth seizure medicine that he tried previously called Keppra just to see if it will have an effect. The cannabis oil probably won’t be here until the end of the week. Ketogenic diet probably won’t happen for a while because Drew has developed a pretty significant bed sore on his sacrum, but it’s still on the table once all the doctors feel like his body will handle it. With his constant seizures, his mouth is constantly moving and chewing on the “bite block” in his mouth that protects the breathing tube, and as a result, his bottom lip is starting to bleed. The doctors did agree to try a dose of Ativan to see if they can get his clinical movement to stop, but they told us he is still having the seizures on his EEG. We’re basically in the wait and hope the seizures eventually burn out phase again. It sucks.

2:30 PM: Between church meetings, I called up to the hospital to check on things and they had not been going very well since the Neurology doctors rounded. So I left church early, ran home and grabbed Alex and Ashley, and we headed back up to the hospital to comfort and be together as a family.

When I walked into Drew’s room, his mother sat in a chair next to his bed, gloves on as she held Drew’s hand, and her head was resting on her elbow as she sat and cried. I sat down next to her and put my arm around her, but she barely moved other than her shoulders shaking with her sobs. After several minutes I was able to get her to look at me and I asked, “What is the matter? What did the doctors tell you?”

“The doctor looked me right in the eye and told me there is nothing more he can do for Drew, that is the problem,” she explained as tears streamed down her cheeks.

I pulled her close and tried to comfort her. “Surely there has to be something more. They just need to figure out the anti-seizure cocktail and make sure they have the right combination of medicines, including the right doses and timing of the medications. They’ll keep trying,” I tried to reassure her, but tears were rolling down my face now too. It hurt to watch our son in bed having seizure after seizure, and then to see the hopeless look in Dawn’s eyes — it was almost too much to bear.

Eventually, she was able to calm down enough to leave Drew’s bedside and go for a walk. We found the rest of the children in the cafeteria and sat and talked for a while. Erin had been there for the doctors’ rounds and confirmed it had been a rather pessimistic outlook, but more out of frustration on the doctors’ part because even though they were not sure what more to try, at least they agreed to try the Ativan and Keppra today. At the very least, the doctors asked us to have another Care Conference tomorrow at 11:00 to discuss our next treatment options now that the plasmapheresis and IVig had finished. Although, in the back of my mind I was fearful it was a meeting to weigh some type of hospice, or comfort-care discussion, instead of any other possible treatments because based upon their rounds today, it didn’t sound like there were any other different treatment options to try.

10:00 PM: “Did you see that?” I asked the nurse.

“Not sure — what did you see?” The nurse had been busy working on Drew’s breathing tube.

“When you were trying to adjust Drew’s bite block, he moved his right arm and hand.”

“Are you sure it wasn’t just a seizure?” He has been having lots of seizures, mostly just moving his mouth and eyes, and she had heard in report about the grand mal seizures.

“No,” I shook my head. “I saw his Grand Mal seizure last night, and this was not a seizure. Last night, he was flexing his arm and jerking his head over and over again. Just now, I think he was trying to reach his hand up to his mouth.”

Over the next hour or so, Drew moved his right wrist a couple of times back and forth, as well as his 4th and 5th right fingers, his left wrist once, and his right elbow. Unfortunately, I couldn’t get him to do them on command or repeat them, but I was able to video a little bit of the movements to send to the rest of the family. However, the movements became noticeably less as he fatigued quickly.

ICU Day #39 (Monday, August 7th)

10:00 AM: Lots of seizures. When he has seizures, his eyes roll up and cannot track anything, and he is unable to move or do anything. Morning medications were a little late because of pharmacy. Funny thing is that Drew is bigger than some adults, but the medicines here are usually packaged in doses for children, toddlers, and infants, so they often have to send up multiple vials or doses to get an adult equivalent.

He didn’t have a Grand Mal seizure this morning, but he did have a myoclonic seizure in his right leg and abdomen. It started about 7:30 AM as just a fasiculation, or rhythmic spasm, in his right thigh, but then it gradually expanded to include his whole right leg and then his abdomen by about 9:00 AM. Neurology doctors were just in and plan to do a “routine” EEG and then they will give Drew some Ativan to try and stop the seizure. On a more positive note, he did move his right arm a little bit more about midnight or 1:00 in the morning, but since then he has not moved more. We think he may have become fatigued or the medications may have peaked. Anyway, hoping the seizure medicines can kick in shortly, stop the myoclonic seizure, and maybe we can see him start moving more purposefully again.

1:00 PM: The nurse was finally able to give Drew some Ativan and a bolus of phenobarbital by about 10:45 AM and the myoclonic seizure stopped within 5 minutes. Just now, Grandpa had been sitting with Drew during our Care Conference, and he said Drew was moving his right arm a little bit again — he bent his elbow while he coughed and then straightened it back out. Still not really able to follow commands or move on command.

So we had our fourth Care Conference today just before lunchtime, and we went into it resolutely that no matter what, we wanted them to do all they could to get Drew’s seizures to stop, but we weren’t exactly sure what to expect. Once introductions were made around the little conference room (2 ICU doctors, 3 Neurology doctors, 1 Rheumatology doctor, and 3 social workers, along with our family), the ICU attending welcomed everyone and said, “I believe we wanted to discuss with you where we plan to go next with Drew. Who would like to start?”

The Rheumatology doctor immediately sat up straighter in her chair. “I want to go first this time,” she said. “I told you before that we have more options in mind, and here are two research articles that discuss them. Before we jump into the treatment, thought, we need to talk a little bit first about the thoughts behind the treatment.”

With that the Rheumatology doctor stood and grabbed a dry erase marker and started diagramming an overview of the immune system on the white board.

“Our immune system is basically divided into two parts: the Innate immune cells and the Adaptive immune cells. Since not a lot is known about FIRES, there is a debate among practitioners which part of the immune system is more to blame. All of our treatments up to now have focused on treating the Adaptive immune cells, which are essentially the antibodies and lymphocytes. Auto-immune disorders occur when the Adaptive immune system (antibodies) begin attacking specific tissues and receptors. We feel that the plasmapheresis and IVig were good, but not the complete answer. Drew hasn’t run any fevers for 2 days despite his persistent pneumonia. However, even though those treatments are finished, Drew continues to have seizures.”

“Now we are going to shift our thinking and treat Drew’s FIRES as more of an auto-inflammatory disorder, which focuses on the Innate immune system. Auto-inflammatory disorders are more rare and essentially occur higher up in the immune system’s chain of attack. Where the Adaptive immune system is more specific and precise, the Innate immune system is more general and non-specific. The Auto-inflammatory process may or may not be triggered by a virus or pathogen, but the reaction is an over reaction of white blood cells and their respone is not well-controlled.”

“If you agree, we would like to begin a new treatment today that targets Drew’s FIRES as an auto-inflammatory disorder, and the new medicine is called Anakinra. He will receive the Anakinra for at least 10 days, but we should have an idea if it works within the next 48 to 72 hours. Other FIRES children who have used this medication have seen their seizures drop by 75% to 90%.”

After the gloomy outlook yesterday, we happily agreed to proceed. If the Anakinra doesn’t work, next step would include a form of chemotherapy, but we’re really hoping the Anakinra works. Several FIRES children successfully had their seizures become significantly less frequent with Anakinra and Ketogenic diet, so we’re hoping it will work for Drew as well. We also discussed possibly moving forward with a tracheotomy and PEG (feeding tube surgically inserted through the abdomen). Additionally, we plan to try the Ketogenic diet one more time to see if we can get it to work while he is receiving the Anakinra, and some of his anti-seizure medicines were also adjusted to see if the control could be improved.

4:30 PM: First round of Anakrina injections completed. Four shots in total, and with each shot, he moved his left hand. After the first one, his brother Alex held his hand, and although Drew’s eyes remained closed, he squeezed Alex’s hand with each of the subsequent shots.

Drew and Alex, October 2016

family, FIRES

It All Started With A Fever, Part 13

The Acute Phase: (Im)patiently Waiting

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.

Seems like all we have been doing and saying this past week is that we have to wait and see what happens. Drew has been in a medically-induced and/or seizure-induced coma since July 5th. We are so anxious to see him open his eyes and maybe even talk to us, but it has been so very difficult to wait.

President Deiter F. Uchtdorf gave a hallmark address during the April 2010 General Conference entitled, “Continue in Patience.” I appreciate some of his counsel and wisdom as it struck especially close to home this past week. Elder Uchtdorf explained, “Patience means active waiting and enduring. It means staying with something and doing all that we can—working, hoping, and exercising faith; bearing hardship with fortitude, even when the desires of our hearts are delayed. Patience is not simply enduring; it is enduring well!” It would be a gross understatement to say that the desires of our hearts have been delayed. I hope our family may have the necessary fortitude to continue through this trial as it will have been 5 weeks this Friday since we brought Drew to the hospital.

ICU Day #34 (Wednesday, August 2nd)

2:30 AM: Drew’s oxygen saturations have been up and down all night, with increased secretions in his lungs. The respiratory therapist is here in the room performing a percussion treatment on Drew’s lungs, which consists of  a hand-held machine that “gently” beats on his rib cage to loosen the phlegm and consolidate the fluids for suctioning. The doctors have ordered these treatments every 4 hours to help keep Drew’s pneumonia from getting worse, and they seem to be helping, but in between the nurses have had to do more suctioning.

5:30 AM: The Radiology Technician just finished using the portable X-ray machine to take another chest X-ray and see how his pneumonia is doing today.

Drew — missionary cousin homecoming.December 2014.

10:00 AM: Neurology and ICU doctors both just finished rounds and they asked us to have a family meeting with the doctors this afternoon to have a plan in place as they start to bring Drew out of sedation. They plan to begin decreasing the Pentobarbital by 1 unit every 4 hours starting at 8:00 tonight. They want to bring him all the way out of sedation again, but gradually, so that they don’t trigger more seizure activity. They also ordered an ultrasound of his abdomen as the chest X-ray this morning showed a pocket of fluid just below his right lung and they want to look at it more closely.

5:45 PM: We just finished our Care Conference with all of Drew’s doctors, except for Rheumatology, but they had talked already with Neurology and were on board. Essentially, the doctors feel that we really cannot go back to the medically-induced coma again as we have pretty much maxed out its impact on Drew’s seizures, and we really need to focus on more of a long-term, management solution. They will finish the plasmapheresis treatments tomorrow and Saturday, and then we will watch how Drew does over the weekend as the Pentobarbital comes out of his system. The Neurology doctors cautioned that best-case scenario is that Drew will only have a few seizures per hour when he first comes out of the coma. We again assured them that we plan to see this through even though the doctors feel Drew will not come out of this “unscathed” and we really have no idea how much this syndrome will impact him, but we will just have to wait and see.

8:00 PM: The nurse just lowered the Pentobarbital rate from 6 to 5, and the slow process begins to bring Drew out of the medically-induced coma.

One of the biggest challenges for Drew’s siblings is being able to figure out why Heavenly Father would allow this to happen to Drew. As we sit and talk, I have tried to reassure them that one day we will know. Elder Uchtdorf said it better: “Often the deep valleys of our present will be understood only by looking back on them from the mountains of our future experience. Often we can’t see the Lord’s hand in our lives until long after trials have passed.” Again, it is difficult to answer the why questions when we are still in the middle of the trial, but someday we will understand.

ICU Day #35 (Thursday, August 3rd)

12:10 AM: The nurse lowered his Pentobarbital rate from 5 to 4, and the Respiratory Therapy has been in to Drew’s room a couple of times to perform some percussion treatment and suctioning. Drew’s pneumonia has not worsened, but has improved slightly. Still no fevers.

8:15 AM: The nurse just lowered Drew’s Pentobarbital rate from 3 to 2, so at this rate, the Pentobarbital should be shut off by about 4:00 this afternoon. However, because it takes a long time to metabolize the Pentobarbital, the doctors said it will likely take 48 to 72 hours to be completely out of his system and Drew probably won’t be able to “wake up” until Saturday or Sunday. We’re cautiously hopeful, but last time they brought him out of the medically-induced coma, Drew eventually went into status epilepticus, which means the seizures wouldn’t stop and couldn’t be controlled, so we’re very worried again about what will happen. His EEG is definitely more active now as they have already started bringing him out of the sedation, but no clinical seizure activity yet. His lungs are sounding a little bit better. No bowel sounds yet, but hopefully as the Pentobarbital continues to decrease his stomach will wake back up.

10:45 AM: Neurology doctors just stopped by. We looked at the EEG screen, and although he cautioned not to watch it too closely but look more at Drew, he said he was somewhat encouraged. There are still frequent “spikes” but also some normal-looking activity in between. Between coming out of sedation and the constipation, he thought the EEG was encouraging despite the several “spikes.” They will be really curious to see what it looks like after the plasmapheresis today. The plan to increase his Perampanel dose today (it is not full dose yet) and they also discussed with Dr. Folloux other contingency plans last night to adjust some of his other medications as needed. They actually thought of two other medications they could add, and they discussed trying the Ketogenic diet again. His tube feeds have been on hold the past 4 days until his bowels start moving again, but his gut has been completely shut down due to the effects of the Pentobarbital. However, the doctors are hopeful his stomach will wake up by tomorrow or Saturday as they bring him out of sedation.

7:00 PM: The nurse just shut off the Pentobarbital drip. They actually kept him on it a few hours more than they originally discussed due to the plasmapheresis taking off his seizure medications. The kidney doctors performed the plasmapheresis from 1:00 to 3:00 this afternoon, and during the second hour, he started having what appeared to be seizures with much more EEG activity. They believe the plasmapheresis pulled off much of his seizure medication along with his antibodies. So as soon as the plasmapheresis ended, they gave him a new dose of his three seizure medications, plus they added a dose of phenobarbital. It took a couple of hours for the new dose of seizure medications to take effect, and in the meantime, it looked like he had a few seizures, which was really hard to watch and sit and wait for medicines to kick in.

10:00 PM: The ICU doctors just said the Neurology doctor (Dr. Butterfield) called and said to give Drew another bolus of phenobarbital. They ran some lab tests to check his phenobarbital level right now after the first bolus it was only 36 and they want him to be between 40 and 50. So they gave him another bolus just now.

As Elder Uchtdorf concluded his remarks, he summarized:”The work of patience boils down to this: Keep the Commandments; Trust in God, our Heavenly Father; Serve Him with meekness and Christlike love; Exercise faith and hope in the Savior; And NEVER GIVE UP.” We would never give up on Drew, but it sure can be painfully hard to learn patience as we wait.

ICU Day #36 (Friday, August 4th)

8:30 AM: Finally, some success with Drew’s stomach waking up. Last time he came out of the Pentobarbital sedation, it took about 15 hours for him to have a bowel movement. This time the plasmapheresis may have sped it up a little bit because it only took 12 hours. Right after shift change this morning, the day nurse discovered during his assessment that Drew’s stomach is officially awake.

Other developments overnight include the slow, but continued improvement with Drew’s EEG as he continues coming out of the coma. However, this morning some of his brain waves were looking really weird on the EEG — the waves did not look like any of his previous seizures, but there were some definite changes. After talking with the Neurology resident, it appears the EEG is picking up muscle movement, not a seizure. As the sedation continues to wear off, Drew has begun swallowing a little bit. When I first saw him swallowing, I was kind of freaking out because I was afraid it was a seizure, but his swallowing is sporadic, not rhythmic or cyclical, and definitely seems more like swallowing. He also has had a little coughing and belly twitches, a teeny bit of a finger twitch as they were suctioning him this morning. Doctors say some of his reflexes have returned, but not able to follow commands just yet. They believe it will still be another 24 to 48 hours before the Pentobarbital may be out of his system enough for him to possibly “wake up.” Again, we’ll just have to wait and see.

11:30 AM: Dawn just arrived at the hospital, and she has been crying. She had registered Ashley for 11th grade at Copper Hills High School this morning, but she didn’t register Drew for his senior year yet. She is not even sure if, or when, he will be good enough to return to school. His ability to return to school this year will depend largely on his progress the next few days, so we will probably have to go into the school next week and talk to his counselor about options for Drew. Again, we just have to wait and wait and wait and see what happens.

One of the many reasons that the Harry Potter books were so popular and enedearing is that J.K. Rowling provided many outstanding, inspirational quotes throughout all seven books in the series. In the fourth book, Harry Potter and the Goblet of Fire, in the very last chapter of the book (didn’t see this in the movie), Hagrid is talking with Harry and his friends about the coming challenges now that the evil Lord Voldemort has returned. As they prepare to depart school and return home for summer vacation, Hagrid gives them this piece of advice:

“No good sittin’ worryin’ abou’ it,” he said. “What’s comin’ will come, an’ we’ll meet it when it does.”

Although Hagrid does not have the eloquence of Professor Dumbledore, he speaks with the wisdom of one who has undergone his own trials and hardships. Hagrid knows that the most terrible things in life can never be predicted, but at the same time, he also acknowledges that life will still go on, and we must continue forward and be ready for whatever may come our way. No matter how Drew emerges from this illness, we too must press forward and meet what’s comin’ when it gets here.

After eating a lot of food samples at Costco, sometimes you just need a nap.

family, FIRES

It All Started With A Fever, Part 12

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.

family, FIRES

It All Started With A Fever, Part 11

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.

family, FIRES

It All Started With A Fever, Part 10

The Acute Phase: Pioneer Day

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.

So often in life, we tend to lose persepective, or our focus can be blurred, due to stress, emotion, and fear. I mentioned in an earlier blog post last week about a frustrating day with one of the nurses, however, I would be negligent if I failed to mention the many, many outstanding nurses who have cared for Drew these past few weeks. He has had so many that it has become difficult to track, and I hesitate to mention names because I cannot remember them all, but some of the hardest working and most compassionate nurses who have cared for Drew include (and not limited to) Brady, Mary Kate, Jamie, Mary, Steven, Laura, Joshua, Nichole, Ashley, Ruby, Melissa, Brooke, Mel, Sarah, Ally, Rachel, Erin, and George.

Obviously, Drew is a big kid with a lot of medicines and a lot of medical needs these past few weeks. I can see the exhaustion on the nurses’ faces when they finish their shifts. They work doggedly to clean, reposition, juggle, actively monitor, and manage all of Drew’s many symptoms and do their best to help Drew recover. Then you throw in some C-Diff and the need to don extra gloves and gowns to just enter his room, let alone work to prevent any infections or other complications, and we can visibly see the extra effort that the staff expend to care for Drew. We also are very grateful to the many attending doctors, fellows, residents, and other clinical staff. There are several doctors who will always hold a special place in our hearts as they sat with us at Drew’s bedside and helped us to understand and navigate this nightmare of a journey. Even though it might be easy to focus on the one, it would be a disservice to lose persepective of the 99 who went above and beyond. Our family will always be grateful for the outstanding care from the vast majority of the nurses, doctors, and other clinical staff at Primary Children’s Hospital who have done their best to help Drew to get better.

ICU Day #25 (Monday, July 24th)

8:30 AM: Last night just before midnight, Drew’s feeding tube became clogged, so they had to replace it with a new one. They were able to place the new feeding tube in his room, and I watched as they threaded it up through his nose, down the back of his throat, and then slowly down into his stomach. Once they could hear with their stethoscope and felt confident that the end of the tube made it to the right spot, a portable X-ray was taken and examined by the doctors to verify it was placed correctly. Drew is about the same otherwise. Still not conscious. Seizures about every 2 to 4 minutes. Doctors plan to continue adjusting medications and monitoring. If anything, the seizures seem to have changed slightly again according to his EEG, but not sure if there is any significance to that or not.

2:00 PM: So one of the medication changes this morning was to drastically jump his phenobarbital dose up because that seems to be the only medication currently having any effect on his seizures. The doctors ordered a bolus dose a little bit ago, as well as big increases to his doses he gets twice per day. It seems the doctors are really trying to break his cycle of seizures because nothing else has really been effective. When they first gave him the phenobarbital bolus, Drew’s blood pressure dropped really low, but it started slowly climbing before they had to give him any norepinephrine. Immediately thereafter, the seizures slowed to about every 15 minutes, lasting less than 45 seconds, although they continue to be focal with clinical manifestations each time, including hypersalivation, spasms in his mouth and jaw, and his eyes rolling upward.

Boy Scout kayak trip, Snake River, 2016

10:00 PM: Sometimes so much attention is focused on the one child who is sick, the rest of the children may feel neglected. We have been trying not to let that happen, spending some time each day to check in and talk to each of them. We also have tried to involve them all in decisions, meetings, and some of the caregiving.

Today is Pioneer Day in Utah. As part of the celebration for this state holiday, we took the kids up to the top of the parking garage and we watched the hundreds of fireworks igniting across the valley. Coincidentally, a line of thunderstorms was also approaching from beyond the Oquirrh mountains, and periodic lightning bolts danced across the sky to punctuate some of the aerials from the ground. It was a nice break from the confines of the ICU, and it was equally nice to express our love to all of the children and their dedication and help these past few weeks.

ICU Day #26 (Tuesday, July 25th)

9:00 AM: Drew continues about the same this morning as he remains unconscious with clinical seizures that vary in frequency from every 3 to every 10 minutes. The seizures really started to increase this morning as some of his medications wore off, but since he got them again at 8:00, the seizures have been relatively quiet again. The ICU doctors came by and they plan to take out the catheter and the arterial line today to keep Drew from getting any additional infections.

Boy Scout Kayak Trip, Grand Teton, 2016

Noon: The occupational therapist came by at 10:30 to help sit Drew up in a stretcher-chair. This effort required assistance from five people in order to keep any of his tubes or IVs from getting pulled out. They like to sit patients up in a chair to help prevent any pressure sores, as well as to allow gravity to assist with draining the lungs, moving the bowels, and challenging the blood pressure to start getting used to being upright again. Drew tolerated the chair well and after an hour, they returned him to bed.

The Neurology team stopped by while Drew was sitting up, and they want to add a new anti-seizure medication called Perampanel. They explained that this new medicine works differently than the other seizure meds, so the hope is that it can help get his seizures under control. Once the Sage 547 study drug finishes tomorrow, the Neurology doctors are thinking plasmapharesis is most likely the next step. They also told us that they started the application for getting an open label cannabis oil type medicine approved so that could be another treatment option later down the road if needed.

9:00 PM: I just returned to the hospital following a church leadership meeting as I tried to get caught up a little bit on some of the needs of the ward. While I was at home, I also grabbed the mail from the mailbox as it hadn’t been checked for a few days, and the first packet of physician bills had arrived. Good thing for insurance. All of the doctors have been working so hard to help Drew that I don’t mind. Otherwise, didn’t seem like much progress for Drew today. Seizures continued most of the day and he is certainly not any closer to “waking up,” nor has he been able to blink his eyes again since last weekend. As the Sage 547 study drug ends tomorrow, the ICU Case Manager has scheduled another Care Conference, or family meeting, with all of Drew’s doctors for 11:00 AM to discuss which treatments to do next. They are still hopeful some of these other options will help, but I think we all agree that placebo or not, the Sage 547 study drug did not work for Drew.

family, FIRES

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.

School play

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

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.

Pouring her heart out

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.

family, FIRES

It All Started With A Fever, Part 8

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.


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.

family, FIRES

It All Started With a Fever, Part 7

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.

family, FIRES