It All Started With A Fever, Part 25

The Chronic Phase: Home Again

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

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

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

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

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

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

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

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

100 days since onset.

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

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

Shopping for some sweet Nikes.

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

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

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

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

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

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

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

101 days since onset.

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

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

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

Loving my Aunt’s dog.

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

Working on standing strength and balance with his physical therapist while playing Connect Four.

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

102 days since onset.

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

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

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

Occupational Therapy working on word-finding and recognition.

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

103 days since onset.

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

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

“That was in my stomach?” Goodbye to the feeding tube.

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

104 days since onset.

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

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

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

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

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

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

Dawn paused, and then answered, “Yes.”

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

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

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

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

Drew made nachos for one of his last Occupational Therapy treatment sessions.

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

105 days since onset.

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

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

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

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

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

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

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

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

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

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

106 days since onset.

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

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

Goodbye, Primary Children’s Hospital.

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

Touring the house with a little help from his brother and sister.

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

107 days since onset.

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

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

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

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

“No you’re not,” Dawn answered.

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

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

“Yes, Drew, you’re home,” Dawn said.

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

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

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

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

Welcome home, Drew.

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It All Started With A Fever, Part 24

The Chronic Phase: The Rehab Homestretch

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

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

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

93 days since onset.

Morning physical therapy session. Drew’s legs are a lot stronger than the first time he rode the bike on September 1st and he could only go across the bridge and back. Now he is riding around the parking lot loop.

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

Played a couple of games of Uno and Drew actually won one game.

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

94 days since onset.

The weather was sunny but cool and this was Drew’s first time walking across grass (he needed a lot of help). Sometimes Drew flips his eyepatch up when he doesn’t want to use it.

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

Drew got to hold some furry critters at Grandma’s.

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

95 days since onset.

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

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

Not a Ketogenic smoothie! It took him over an hour, but he ate everything.

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

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

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

96 days since onset.

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

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

He later told us he was a little scared to be on the big stairs, but he did really well.

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

97 days since onset.

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

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

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

Working with PT on walking, balance, and safety.

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

98 days since onset.

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

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

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

”What?” I asked.

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

“Do they know why?” I asked.

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

”Is he having seizures again?” I asked.

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

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

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

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

99 days since onset.

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

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

Watching the sunset over the Salt Lake Valley from the hospital’s rooftop patio.

 

 

 

 

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It All Started With A Fever, Part 23

The Chronic PhaseField Trip

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.

Rehab Team, Day #16 (Saturday, September 23rd)

86 days since onset.

1:30 PM: The morning therapy sessions were the usual dressing, walking, and strengthening activities, but the afternoon physical therapy session involved car transfer training, which was a pre-requisite to leaving the hospital this weekend for a few hours on our Ride Pass. We pulled the car up to the front of the hospital and practiced with the physical therapist. The wind was whipping around and the temperature was chilly as a storm was approaching, but Drew did very well with the car transfer. The nurse also explained to us that as part of the Ride Pass, the doctors and treatment team set 3 goals for us to work on when we leave the hospital. The Ride Pass also allows us to see what gaps remain for Drew to return to home (or other community settings safely.)

4:00 PM: “You know, the ride pass is valid for both Saturday and Sunday,” the nurse explained. “So long as you finish your therapy sessions, which you already have..”

”Really?” Dawn asked. “Maybe we can go for a ride… get out of the hospital for a few minutes.”

”It’s raining,” I said. “And we only have about an hour before his next medicine is due.”

”So what?” Dawn said. “Do you want to go for a ride, Drew?”

”Sure,” he said.

”OK, then, I’ll go pull the car up to the front of the hospital,” I said.

6:00 PM: We drove around the University of Utah campus, up to the front of Hogle Zoo, and then up to Red Butte Gardens, but it was raining pretty hard so we really couldn’t get out of the car. Drew tolerated the car ride without problems and it was good practice.

First trip outside the hospital in over 12 weeks. Just a drive around campus because of the rain.

 

Rehab Team, Day #17 (Sunday, September 24th)

87 days since onset.

11:15 AM: Drew went to church with Dawn and Erin at the hospital this morning, and still struggled to understand everything said by the speaker. He will make comments out loud, and not in a quiet voice, and today he was quite noticeable.

“I’m broken. I’m broken. I’m broken.” Drew kept repeating this phrase during the closing prayer, but it was so close to being over, they just tried to hush him until the prayer finished.

”What’s the matter, Drew?” His sister asked as the congregation started leaving the chapel.

”The man told me I’m broken,” Drew explained.

”No, he didn’t say that,” his sister said.

”Yes, he did,” Drew said.

”Drew, he didn’t say that, and you’re not broken,” his mother added.

”I’m broken. I’m broken,” Drew continued. “Can I rip this hymn book?” Drew picked up the hymn book from the seat beside his wheelchair.

”No, you can’t rip the hymn book,” his mother said and she carefully took the book from him and returned it to the seat.

For another 45 minutes, he continued to angrily repeat, “I’m broken” before they were able to get him to calm down and focus on something else.

2:45 PM: “How fast is Mom going?” Drew asked me. We were sitting in the middle row of our SUV together. Per the doctors orders, one of us had to sit next to Drew to make sure he had no seizures, stayed upright, and tolerated the drive well.

”Looks like she is going about 70, Drew,” I told him.

”70?” he replied. “Go faster, Mom.”

”I can’t, Drew, it’s raining and the other cars are going slow.”

”I like to drive fast,” Drew whispered to me.

”Not sure I wanted to hear that,” I whispered back.

”Go fast, Mom.”

”I’ll go as fast as I can, Drew,” she said, “but I am more concerned about getting to Grandma’s safely than getting there fast.”

5:30 PM: Drew did fairly well at Grandma’s, but he definitely had trouble navigating stairs, and the more tired he got, the more impulsive and loud he became. Several times, he would try to stand up on his own without warning, and since there were no seatbelts in Grandma’s chairs, we had to be ready to stop or catch him.

He remembered the older cousins fairly well, but it took him several tries to get the younger cousins’ names. Towards the end of the visit it was obvious that he was becoming extremely tired, and as we were preparing to leave, Drew thought it would be funny to drop the F-bomb as he walked toward the door.

”Drew Carter Olsen!” Grandma said.

”I’m just kidding, Grandma,” Drew chuckled.

”That kind of language is NOT funny,” Grandma said with her hands on her hips, “and you don’t talk like that in MY house.”

”OK,” Drew said.

As we were walking down the four stairs into the garage, Drew didn’t even look down, but barreled down them while leaning heavily on my shoulders. I tried to cue him and kept him from falling, but he still rolled his ankle on the last stair.

”Ow, that hurt,” he said. He limped for a few steps, but seemed to be walking fine by the time we got to our car in the driveway. The return to the hospital was uneventful as Drew talked about how much he liked driving fast on the freeway.

Visiting with Grandpa.

Rehab Team, Day #18 (Monday, September 25th)

88 days since onset.

9:30 AM: Pretty good night. Only woke up briefly about 1:00 and pulled on his pulse oximeter and then again at 6:00 when they had to empty his bladder, but both times he went right back to sleep. Drew still gets a little groggy for his morning therapy sessions due to one of his seizure medicines that makes him sleepy, but not as bad as when he was getting the Trazadone. Drank most of his smoothie for breakfast, however, we are grateful that the doctors plan to start weaning him from the Ketogenic diet and will bump his ratio down to 3 fats for every 1 carb and protein combined. The doctors were telling us that even with the extreme ratio of 4.5 to 1, Drew was barely in ketosis so the diet may not have been truly contributing to his seizure control anyway, and with his slow-healing tracheostomy hole and bed sore, we are hoping the increased protein will help them to heal more quickly.

8:30 PM: “I hate your beard,” Drew said. Two of his uncles and two of his cousins had come to visit.

”Why do you hate my beard?” His uncle asked.

”Because, I dont’ like beards,” Drew said. “Have you always had a beard?”

”Drew, don’t you remember? I have had a beard for years,” his uncle said.

”Well, I don’t like it. I think you should leave,” Drew said as he pointed at the door.

”What?” His uncle asked as he looked to us unsure what he should do.

Before we could answer, Drew said, “Just kidding. You can stay, but I still don’t like your beard.”

We tried not to mention beards the rest of the visit.

Rehab Team, Day #19 (Tuesday, September 26th)

89 days since onset.

9:15 AM: Super sleepy this morning even though he slept almost the entire night. He got his medicines at 8:00 AM, and he started falling back to sleep by 8:30 AM. He pretty much slept through OT and they had to reschedule PT because he couldn’t wake up. The nurses didn’t give him any sleep medicines the last few nights, so they are checking again to see if he has a urinary tract infection from all the straight catheters.

10:30 AM: We asked to meet with the dietician about his food. So far, they have brought him the exact same food as when he was on the extreme Ketogenic diet ratio but just a bigger serving without adding any more protein. Last night, he had an egg white and cheese omelet and they doubled the amount of salsa — we were upset because salsa is a condiment!! Then this morning, they doubled the amount of strawberries in his smoothie. He wouldn’t touch the smoothie and we picked some of the strawberries out, but he fell asleep while eating. The doctors and nurses agreed that the diet needs to have more protein, and we asked the dietician to please give him more variety. Really — who eats salsa without chips or something else? That’s not going to help his wounds heal!!

4:30 PM: We just met with the Social Worker who reviewed today’s IDT Meeting discussion and plan for Drew. Short answer is that we will start getting things ready for Drew to discharge from the hospital on either Friday, October 13th or Saturday, October 14th. He will be on a normal diet for his last week in the hospital and they can work with him on swallowing his pills so that hopefully he won’t need the feeding tube at home. The week before he leaves the social worker will also help us order a wheelchair and walker and any other equipment he will need for home, and then she will also help us set up some home or outpatient therapy for continued rehab.

Rehab Team Day #20 (Wednesday, September 27th)

90 days since onset.

4:00 PM: The Rehab doctors came and talked to us about Drew’s sleepiness. His urinary labs came back negative for any infection, and it would simply appear to be that Drew’s seizure medicines are having a greater impact on his alertness. The doctors agreed that they need to start decreasing his seizure medicines so that he can be more awake, but they can only do one at a time and go slow to keep his seizures from returning. Further, the Ketogenic diet is considered to be one of the seizure medicines, but the chances that he is still in ketosis are slim, so they plan to accelerate weaning off of the diet. Tomorrow they will decrease his ratio to 2 fats for every 1 carb and protein, and then starting on Monday he will be on a normal diet.

7:00 PM: ”Why do you have to time how long I eat?” Drew asked.

”Because you take too long,” Dawn tried to explain. “You can’t take 90 minutes to eat your meals.”

”Why does it matter?” Drew asked.

”Because they won’t take out your feeding tube,” Dawn said as she pointed to his face. “Don’t you want your feeding tube out?”

”Of course,” Drew said, “But I don’t seen why it matters how long it takes to eat?”

We are working with Drew to speed up his eating. Every little distraction side rails his focus and he has not regained any automatic behaviors so that he can keep eating while he watches TV or talks. He will take little bites and chew them for several minutes before swallowing, so it just adds up to over an hour to eat a meal. Again, we sure hope he continues to improve and get better.

8:30 PM: “Dad, can you hand me a towel?” Drew asked me.

”Here, use this one.” I handed him the end of the bath blanket hanging from the back of his wheelchair that he had used on his way back from his evening shower. Drew had finished dressing, brushing his teeth, and washing his face.

”Dad, this towel is wet.”

I felt the blanket. “No, Drew, it’s dry.”

”Dad, it’s wet.”

I felt the blanket again, and then I felt his hands. “No, Drew, your hands are wet, not the towel.”

”What?” He asked.

”Your hands are wet. Dry them off on the towel.”

He tried to dry his hands, but then he persisted, “Dad, I need a dry towel.”

His sister then walked over and felt his hands. “Drew, your hands are dry now, but they are ice cold. Let’s warm them up in this blanket.”

She worked for a few minutes until he finally realized what he was feeling and his hands started to warm up.

First time on the treadmill.

Rehab Team, Day #21 (Thursday, September 28th)

91 days since onset.

8:15 AM: “Drew, for breakfast they brought you scrambled eggs, a cup of raspberries, and some cream,” I said as I situated his breakfast tray on the table in front of him. Drew was sitting in his wheelchair next to the bed.

”OK,” Drew said.

”Do you want me to put a little raspberry juice in the cream?” I asked.

”Dad, what are you doing? Don’t ruin my milk.”

Drew grabbed the cup of raspberries from me and poured them on his eggs.

“Drew, that is gross.”

”No, Dad, my milk is gross now.”

He mixed them around and started eating them.

Several minutes later, a doctor stopped in to see Drew and he asked Drew what he was eating. Drew said, “scrambled eggs and salsa.”

When the occupational therapist arrived for his OT treatment, Drew was still eating and she asked him, “why are your eggs red?”

Drew answered, “it’s scrambled eggs and salsa.”

I explained that they were raspberries, but to Drew, he finished the plate believing it was salsa that he mixed into his eggs and he couldn’t really tell the difference.

Working out in the gym with PT — biceps curls with a 10-pound bar.

 

Rehab Team, Day #22 (Friday, September 29th)

92 days since onset. — THREE MONTHS since being admitted to the hospital.

Today was a day of reflection and remembrance for me. Dawn spent the day at the hospital with Drew and said he did well with most of his therapies while I spent the day at home fixing our daughter’s car and installing grab bars for Drew to come home. In the evening, the whole family sat in Drew’s room as his brother and sisters all came to the hospital. We had the BYU-Utah State streaming on Alex’s computer, which served to be a major distraction so that Drew ended up taking 2 hours to eat his dinner (steak and salad).

Although Drew has made a lot progress from the brink of death, the 3-month anniversary of the onset of his illness combined with the prospect of leaving the hospital within the next two weeks has brought more into focus the extent of Drew’s continued impairments and how much our lives will be different now.

I slept poorly the last couple of nights as I keep thinking back to the week before he came to the hospital. He had been running a fever for a few days with some malaise, but really no warning signs of what lie ahead. He talked to me about his workout routine, reviewed his schedule at work for the week, and asked about hanging out with his friends while we sat and ate dinner three nights before he went unconscious. Now we have to help him eat, get dressed, and shower. He has trouble remembering things and struggles at times to find words. His eyes don’t work together and he has to wear an eyepatch. At this point, he also has a hole in his throat and a wound on his tailbone that have yet to heal. His body is weak and his balance is horrible, and to make matters worse, he does not realize his balance is bad and has to be supervised at all times.

In the back of our minds, we were hoping that Drew would be able to rehab back to normal before he left the hospital, with visions of him walking out the front doors of the hospital with his arms raised in victory. However, that seems more fantasy than reality at this point and will likely not be achievable by the time he leaves the hospital in a couple of weeks.

Next summer we were hoping for a family trip to Hawaii to celebrate Drew’s high school graduation and his older sister’s graduation from college, but now the thought of any future family vacations seem as insurmountable as Mount Everest. Even just a trip to the grocery store now appears extremely difficult and frustrating, and will require coordination of efforts and juggling of schedules.

Life will not be the same, and certainly our family is no different from others who face illness or other challenges, but we have to just keep moving forward, grateful in the fact that our family is still whole despite what has been lost, working together to overcome what still lies ahead.

Shooting some hoops in physical therapy. The PT sits behind him to guard him from falling as he works on his balance.

 

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It All Started With A Fever, Part 22

The Chronic Phase: Trying to Get Some Traction

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.

Rehab Team, Day #9 (Saturday, September 16th)

79 days since onset.

7:00 PM: Drew had a pretty decent day riding the bicycle and shooting a small basketball for physical therapy. He sorted his clean laundry and folded his clothes with occupational therapy. He practiced memory and word-recognition games with speech therapy. Then in the afternoon, Drew was able to watch a little bit of the BYU versus Wisconsin football game before falling asleep (the game was ugly anyway) for a 90-minute nap.

He had a really good evening playing cards (War and Go Fish) with his family, especially once they brought him an eye patch. We were noticing the last several days that as Drew would try to read or look at his phone, he would close his left eye and look through his right eye. As the therapists would work with him, he would constantly say that his right eye was clear and worked well, but the left eye seemed blurry and was not lining up with the right eye. As we put the patch over his left eye, he had a much easier time looking at his cards and playing the games tonight. There are plans for an Opthamology consult later in the week.

Playing cards with the new eye patch. He said it helped a lot.

9:30 PM: Drew starts getting ready for bed by 8:30 most nights because he gets a bunch of seizure medicines at about 8:15, and when they start to kick in 20 to 30 minutes later, he pretty much falls asleep even if he is in the middle of playing cards. So we try to get teeth brushed and ready for bed just after his medicines are given.

Drew had been in bed and falling asleep as the nurses were doing vital signs and performing their shift assessment tonight, but they had to re-dress the bandage covering the bedsore on his tailbone. As he seemed to already be asleep, the nurse’s aide helped roll Drew onto his side and held him there while the nurse worked on the bandage. However, Drew woke up and flew into a rage.

“Will you stop bullying me?” Drew yelled at the nurse’s aide who was helping to roll him. He pushed hard against the bed rail and fought with the nurses to roll away from them.

”Why are you doing this to me?” He said as he glared at the aide.

The nurse said, “Drew, we need to change your bandage on your back — can you roll over for me?”

”Leave me alone,” Drew yelled as he took a swing at the nurse and tried to hit her. He then tried to punch the nurse’s aide in front of him.

Dawn and I then jumped up and went over to the side of Drew’s bed. His mother tried to calm him down and remind him where he was while I held his hands to stop him swinging at the nurses. It took all of us working together to finally help him to relax and turn for the nurses. Unfortunately, his bed sore has “stalled” according to the Wound Nurse, and we are trying some different bandages and a medicine called Meta-honey to see if it can help the wound to heal. The bed sore is about the size of a small matchbox and goes about halfway to the bone, which is better than it was in the ICU, but hasn’t changed for a couple of weeks now.

This is the third Saturday night in a row that I was able to go home and sleep in my bed. Drew’s older sister has volunteered to come up from school on the weekends and stay with Drew on Saturday nights so that I can go home and get some sleep and get to all of my church meetings more easily on Sunday mornings.

Rehab Team, Day #10 (Sunday, Septemer 17th)

80 days since onset.

4:10 AM: The bed alarm went off as Drew tried to climb out of bed. However, as soon as his sister stood up, he remembered he was in the hospital and stopped, and then he went back to sleep for a while.

11:30 AM: He had a good breakfast and got dressed once his mother arrived at the hospital. He fell asleep just before church was to start at 10:30, so they missed the meeting. But the church leaders came around after the meeting and offered the sacrament in Drew’s room. The leaders blessed the sacramental emblems and then gave them to Drew, his mother, and his sister.

Later when I arrived at the hospital, Drew said, “Hey, Dad! Guess what?”

“What?”

“When they blessed the sacrament in my room, they said to ‘bless the bread and this piece of cheese….” He paused for a moment to look at me and see if I understood.

“No they didn’t, Drew,” his mother corrected.

He seemed serious and intense, but then the corners of his mouth slowly turned upward and Drew started chuckling.

She explained to me that they do have to give him a piece of cheese instead of bread because of his Ketogenic diet, but they didn’t change the words of the prayer. Sometimes it is hard to tell if Drew is joking or not, but once he started giggling at his joke, we all started laughing.

5:30 PM: Drew fell asleep not long after I got to the hospital. He typically has a rest break in the morning and another one in the afternoon, not necessarily to sleep, but just to give his healing brain a rest from any stimulation. We turn the lights out and keep the room quiet, so he usually falls asleep anyway, but we were told to limit his naps to 60-minutes, if possible.

This afternoon, we started to wake him up from his nap so that he could visit with some family and cousins who had come up to the hospital. However, he was struggling to wake up. We try tickling him, pinching his legs (softly), and sometimes even ice packs. He woke up enough to get up to his wheelchair, but then fell back asleep while we moved to the lobby.

Because his room is relatively small, and to minimize noise and overstimulation, the doctors had limited Drew to no more than 2 visitors at a time in his room. So today, we thought we would go down to the lobby where there was more room for everyone. There would still be a lot of noise, but it wouldn’t be as confined.

Once in the lobby, we woke him up again, and then he was able to visit with some of his cousins he hadn’t seen since before he got sick. After a few minutes, he recognized them and gave them hugs. Even though he kept mixing up their names, he actually remembered them and had a nice visit. As he gets tired or over-stimulated, he will perseverate or forget words, and he has a harder time hearing and understanding what is said to him. We try to speak loudly and stand in front of him when we talk to him, and that helps him to understand. His grandparents and his aunt and uncle were also there. A short time later, three of his friends from school came and they visited quite a while with Drew before and after dinner.

Rehab Team, Day #11 (Monday, September 18th)

81 days since onset.

1:30 AM: I awoke to the sound of Drew’s bed alarm. I opened my eyes and saw Drew’s legs hanging over the bed rail.

”Drew, stop,” I yelled. “Where are you going?” I jumped up and ran over to stop him from getting out of bed. The nurse ran into the room as I grabbed Drew’s legs and pushed them back over the rail.

”Dad, I need to get up and brush my teeth,” Drew said, and then he tried to squirm out of my grip and swing his legs again.

”No, Drew,” I said. “It’s the middle of the night still.”

”We’ll brush your teeth in the morning,” the nurse said as she worked to reset the bed alarm.

”Where’s my phone?” Drew asked. I handed his phone to him. He pushed the button to illuminate the screen, and then he squinted and read the time. “One-thirty,” he read aloud.

”Yes,” I said. “In the morning. You need to go back to sleep until 7:30.”

”OK,” he said as he closed his eyes and pulled his blanket up to his chin. It took a few more minutes, but he finally drifted back to sleep. Once I was sure he was out, I slowly retreated to the fold-out couch and laid back down.

4:30 AM: He woke up again, but this time he didn’t yell or try to get out of bed. I could hear him fidgeting in the bed, so I opened my eyes and saw that he had grabbed the bedrail with both hands and had pulled himself up so that he could peek over the padded bedrail.

I didn’t say anything, but I waved at him. He waved back.

”It’s still the middle of the night, Drew. You need to get some more sleep.” Without a word, he rolled back into the bed and closed his eyes. I watched for several minutes to make sure he wasn’t playing possum and attempting another bed exit, but I could hear his snoring start back up again and I knew he was asleep.

7:30 AM: Drew woke up two more times in the night, but once was when the nurses emptied his bladder at 6:00 AM, so it wasn’t entirely his fault. At least he was more easily oriented to remember he was in the hospital and he was able to more quickly fall back asleep.

I had started waking Drew up again so that he can get out of bed and up to his chair for breakfast. He was starting to rouse when the nurses entered the room. The night nurse and day nurse finish up their shift-change report in the room beside the patient’s bed.

As she finished up her report, the night nurse leaned closer to the bed and said, “Drew, I’m going home now.”

“What?” Drew has half-asleep still, and nearly automatically raised both his arms and said, “Well, alright then. Come give me a hug.”

“Well, OK,” the nurse said.

As she leaned forward and Drew wrapped his arms around her shoulders, she said, “Hey, Buddy, you need to brush your teeth — your breath stinks.”

Without missing a beat, Drew responded, “Well, so does yours.” Drew didn’t laugh, but the rest of us did.

8:00 AM: Once Drew was awake and transferred into his chair, I pulled his bedside tray closer and helped put the straw in his breakfast smoothie.

“Dad, I’m sick of shakes.”

”I’m sorry, bud,” I said. “This is all you can have right now. We’ll talk to the doctors later today and see if we can change it.”

“Fine,” he said. However, I encouraged and cued him for the next 20 minutes and he reluctantly took a few swallows. Finally, he pushed the cup away and said, “No, I don’t want any more.”

”Fine,” I said. “I don’t blame you.”

I took the unfinished smoothie back out to the nurses’ station. The nurses have to calculate how many calories he ate, and then they re-start his tube feeds between therapy sessions so that he can still get his nutrition and recommended calorie intake.

4:30 PM: I got off of work a little early, and it is a good thing I did because the Neurology attending doctor came to discuss Drew’s diet and other concerns with us. After much discussion, the Neurology Team had agreed that because his wounds are not healing and he is already getting sick of the diet, they are going to start weaning him off of the diet (just like any medicine, they have to gradually decrease it). The goal is to have him off of the diet before he leaves the hospital, and in a way, it will be nice to have him supervised for any possible increase in his seizures as they wean him off the diet and they can adjust stuff here if they need to. No seizures today, and he had a 2-hour nap through lunch, so he did really well in therapy this afternoon. He rode the bicycle outside again this afternoon, and he played several games with OT.

The Neuro doctor said that with the FIRES kids, they will have some seizures when they go home, but they typically don’t go back into status epilepticus (the non-stop seizures) once they enter the chronic stage. As we adjust his medicines they can go slow and make sure the seizures stay under control now. The rehab doctors were saying that even with the 4.5 to 1 ratio, he is barely staying in ketosis, and with his slow-healing wounds, it only makes sense to wean the diet first instead of waiting 2 to 6 months like they normally would. With that decision, they will change his ratio to 4:1 for this week, 3:1 next week, 2:1 the following week, and then finally have him on a normal diet for about a week or so before he goes home. Hopefully that will also allow time for his bedsore and tracheostomy wound to heal before he leaves the hospital.

Getting encouragement from mom. Crawling hurts his wrists, arms, and neck.

Rehab Team, Day #12 (Tuesday, September 19th)

82 days since onset.

9:30 AM: Drew had a better night and only woke up twice, but unfortunately, he had a really hard time waking up for breakfast. Before I left for work, he was also having a hard time staying awake for his PT and OT sessions. In fact, he started falling asleep while putting on his socks, and then again later, he fell asleep while kneeling and working on his balance. I had to leave for work, but Dawn said they barely got him into the wheelchair and returned to his room, and because he was so sleepy, they reclined the wheelchair and let him sleep there until lunch arrived at 11:00.

9:45 PM: I returned a little later tonight after finishing my church meetings and found Drew asleep in bed and Dawn sitting on the couch crying. I held her for a while and let her cry. She finally explained that Drew had a better afternoon and evening, but she was sad after Drew had a visit from his best friend and girlfriend. Drew was asking his best friend all sorts of questions about school and classes, because they were supposed to essentially have the same schedule this semester. As they talked, Dawn said she could tell that Drew was feeling left behind and missing school, and after they left, he was really wanting to get out of the hospital and be back with his friends at school.

”Why did this have to happen?” She asked me. “This isn’t the way his Senior year was supposed to go.”

”I don’t know,” I said. “But at least we still have Drew with us.”

Rehab Team, Day #13 (Wednesday, September 20th)

83 days since onset.

8:00 AM: “Good morning, Drew,” the Nurse Tech said. “Time for your breakfast.”

Drew groggily opened his eyes and looked at the Tech. “Don’t tell me it’s another smoothie,” he said.

“Ok,” the Tech said. “I won’t.”

After a moment, Drew asked, “So, is it another smoothie?”

The Tech smiled. “You’ll have to ask your nurse.”

His nurse walked into the room holding Drew’s breakfast.

Drew couldn’t see what she was holding, so he asked, “Is it another smoothie?”

The nurse, unaware of the previous conversation, shook her head and said, “Yes.”

“Ugh!” Drew said as he closed his eyes and shook his head. “At least I hope it is strawberry.”

As she read the writing on the lid, she smiled and said, “Looks like we at least got that part right — it’s strawberry.”

“Ok, then,” Drew said as he started moving his legs towards the edge of the bed. “I’ll get up. But I can’t believe its another smoothie.”

10:00 AM: Drew struggled to stay awake all through breakfast and his morning therapy sessions. Today he started falling asleep while putting on his socks, and he was barely staying awake while shooting baskets and walking to his room with physical therapy. He had a very hard time just standing up straight, and he leaned heavily on the walker as he walked, nearly falling multiple times if not for the physical therapist pushing and pulling on him to keep him upright. Every step we had to cue him for safety, balance, and direction to his room. When he finally made it to his room, Drew laid down on his bed and immediately fell asleep, which was too bad because he was scheduled for a visit this morning from the Copper Hills High School Principal, Mr. Quarnberg, and Drew’s Counselor, Mrs. Walters. Dawn and I visited with them as Drew slept. They reviewed Drew’s progress towards graduation and allayed our fears about him missing so much school. They assured us that they will work with the hospital Education Specialist to track his work while he is here, and then once he returns home, we will work with the school and his doctors on his gradual return to school. As a very nice gesture, they brought him a school blanket, and encouraged him that lots of people and peers are praying and hoping for his recovery and return.

Drew showing some school spirit.

8:00 PM: Better afternoon, but little progress. Drew had a 90-minute nap through lunchtime and missed lunch, and then after his afternoon therapy sessions, he fell asleep again and missed Music Therapy.  The one bright spot was his evening shower. He finally seemed alert and awake, and he walked with the walker and a lot of assist down to the shower room at the far end of the unit. He tried to do as much of his shower as possible, although with his tracheostomy still open, I had to sit and keep the bandage covered and dry as much as possible.

Rehab Team, Day #14 (Thursday, September 21st)

84 days since onset.

8:30 AM: Instead of hollering my name the last couple of nights when he wakes up, he will lift his head up and look for me on the couch on the opposite side of the room. Or he will grasp the bedrails with both hands and pull himself up to look for me. I still wake up when I hear him moving in bed, so I wave at him to let him know I see him, and then he waves back. I haven’t had to remind him as much that he is in the hospital, but I do have to remind him that it is still the middle of the night and he needs to go back to sleep. The last several nights we were relying on Trazadone to help him stay asleep, but we finally realized that in combination with all of his other seizure medicines, the minimal dose of the sleeping medicine was amplified by the sedating effects of the rest of his medicine, so he was struggling to wake up in the morning, and struggling even more to stay awake the last few days. So we discussed with the doctors, and last night was the first night without any sleeping medicines and it seemed to make a big difference.

Finally a day where we felt like we weren’t just spinning our wheels. He practiced getting dressed with OT and he put his socks on nearly independently. With physical therapy, he walked all the way to the Rehab Gym with a walker (still lots of assistance and verbal cues). Once in the gym, he played Uno with the therapist and his mother while he practiced unsupported sitting, reaching, and holding his cards. In the afternoon, he went for another bicycle ride with physical therapy, along with more practice walking. Finally with Speech Therapy he played memory games with cards and worked on word-finding as he still struggles to remember names of items, or he calls them the wrong word (which is similar to his very first symptoms of being sick, before the seizures even started).

He finished the day with a visit from his brother, Alex, and his brother’s friend. They played WAR, and even though he lost the card game, he was actually somewhat civil in defeat and not so competitive for a change. While his brother was here, we also walked to the end of the hallway and back, touched the ceiling, and had him stand next to his brother to see how tall he was in comparison. The only problem is that Drew kept trying to run and nearly lost his balance multiple times. He is still extremely impulsive and very much lacks any safety awareness. Finally a good day all the way around with therapy, rest, and a little more improvement.

Working on standing balance, coordination, and strength.

Rehab Team, Day #15 (Friday, September 22nd)

85 days since onset.

3:30 PM: I returned to the hospital from work to find Drew in his room working with Speech Therapy, and he hollered, “I don’t like your freakin’ beard or your freakin’ moustache.”

Dawn had stepped into the hallway to visit with one of our neighbors, so Drew had been alone in his room working unsupervised, and he was really acting up today.

“I think you should cut it all off, your freakin’ beard,” Drew said again.

The poor speech therapist was trying hard to redirect Drew to the task they were working on at hand, which was following verbal directions to draw a picture, but Drew was struggling to focus.

“Drew, Drew,” I said as I stuck my face right in front of his, and with our noses nearly touching, I said, “You need to be nice. Stop being so rude.”

”It’s his beard,” Drew said matter-of-factly.

”It’s OK,” the Speech Therapist said. “Drew, let’s try something different.” He then proceeded to pull out the picture cards.

As good as Drew’s day was yesterday, and even with a decent night sleep, he seems to have taken a step backward as far as his behaviors and cognition. He has said lots of rude things to the staff today and isn’t listening when they ask him to help do things, like roll on his side. Fortunately, the nurses and therapists know this is part of the process, but these behaviors can sure try our patience.

4:30 PM: The eye doctor just finished examining Drew. He is from the Opthamology Neurology Team and also video recorded Drew’s eye movements to add to his chart. Essentially, the doctor said there is not much we can do right now to fix his eyes but simply to continue wearing a patch over one eye. His eyes both seem to do well individually, but they are not coordinated together with their movement or focus. The doctor said the way to fix it is to address whatever is causing the vision problems, and at this point, Drew’s vision problems could be due to his brain illness, his prolonged seizures, or three of his seizure medications. Unfortunately, it is too early to say for sure, so in the meantime, wear an eye patch and then we will return to the clinic a few weeks after we leave the hospital.

8:30 PM: “Why are you nurses always reporting what I say?” Drew’s continues to be rude and defiant to the nurses. Not sure if it is official, but in a way, it seems like Drew’s brain is healing similarly to his body. After being so sick and in a come for so long, he needs to re-learn how to roll and sit up and stand and eventually walk and run. In a way, it seems his behaviors and cognition likewise have to progress again through the different stages and phases of growing up. For the past couple of days, he is acting a lot like he is in 4th or 5th grade again. Hopefully this will be a short phase and he will continue to progress to more age-appropriate behaviors, but he may or may not — we just don’t know how much lasting damage was caused by his illness and seizures.

He walked to the shower room again with a walker, assistance, and lots of verbal cues. After, he put a small puzzle together with his sister. It is interesting to note that he still has not regained normal sensation throughout his body. As we were transferring onto the shower bench tonight, he scraped his arm on the doorway pretty hard, but he didn’t even flinch. He cannot feel his feet very well, nor can he tell if he has a full bladder or not, and his balance and proprioception are horrible. The physical therapist today, though, hadn’t worked with Drew in nearly a week, and he couldn’t believe his progress with some things, such as his sitting balance and standing up. Of course, he still has some things to work on and improve in the next 3 or 4 weeks of rehab (vision, sensation, balance, diet, wounds, safety, strength, bladder, cognition, etc.), but hopefully we can continue to make some progress with his physical, mental, and social recovery before he comes home.

The last bit of news we received this afternoon from the doctors was that they agreed to allow us to have a Ride Pass for this weekend, which means we are allowed to take him out of the hospital for a few hours to practice different transfers and activities. We try to achieve a few goals with the outing while also identifying the areas we need to continue to practice for the next 3 or so weeks in Rehab. In order to be ready for anything that might arise, his mother and I were trained how to administer his rescue medicine in case he has a prolonged seizure. We are also getting trained on how to empty his bladder even though we are planning to return to the hospital before he would need to have the straight catheter again. They pretty much said we could take him anywhere but our home, because he would not only be really confused, but it could be very difficult to get him to go back to the hospital. So, we’ll practice and train and see if we can take a field trip on Sunday for a few hours.

Shooting hoops in the Rehab Gym.

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It All Started With a Fever, Part 21

The Chronic Phase: Welcome to Rehab

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.

Rehab Team, Day #2 (Saturday, September 9th)

72 days since onset. Seizure count = No seizures today.

8:30 AM: “Drew, you need to swallow.”

Drew sat in his wheelchair with the bedside table pulled up close to him. He was working on a strawberry smoothie made with heavy cream and a few strawberries. The Speech Therapist had trained Dawn and myself how to assist him with eating and making sure he doesn’t choke or swallow down the wrong tube, and now that he is cleared to start eating, the doctors wrote the orders that he can only eat meals with the Speech Therapist or his parents present to assist.

Drew finally swallowed, and then said, “Why are they talking about me out there?” He turned to look out of the open doorway towards the nurses’ station where the nurses were busy giving their report as the new nurses prepared to start their day shift.

I stood up and closed the door. He is easily distracted and then it makes it harder for him to remember how to swallow, or to remember that he even has food in his mouth (even if is is just a smoothie). What would normally have taken Drew 10 minutes to eat now takes about 45 minutes, and Dawn or myself have to sit there and cue him and help him make sure he can eat without choking.

“Good job, Drew,” I said. He finally reached the bottom of the cup.

4:00 PM: We had about 20 more minutes of physical therapy to obtain for the day to get to his 3-hour allotment. He had tried to get it all in the morning, but he was falling asleep and having a hard time participating, so the physical therapist said he would return in the afternoon.

“Do you have a front-wheeled walker tall enough for Drew?” I asked. We had been having him walk in the room to the bathroom and a little bit in the therapy gym by having Drew hold onto our shoulders and then helping him under his arms. I thought maybe he was strong enough to try a longer walk by using the walker for more stability.

“Yes,” the Physical Therapist said. “Let me go grab it.”

While he ran for the walker, I lined Drew’s wheelchair up in the hallway. Once in place, Drew stood and grabbed onto the walker, although I had to assist his left arm up onto the handle and help his fingers to grasp the left handgrip.

With the physical therapist on one side and me on the other side, we were able to help Drew walk to the end of the hallway. However, his body was leaning all over the place and if not for the two of us, he would have fallen over multiple times. He required constant verbal cues to stand up straight, regain his balance, lift his legs higher, and steer away from the walls and objects in the pathway. Just the fact that he had the strength to walk that far was amazing, but his balance is very poor, as is his safety awareness and vision (everything is blurry right now). Considering that he was still coming out of his coma only 4 weeks ago, we are happy that he has made so much progress already.

9:30 PM: Drew had his first shower tonight as he prepared for Homecoming. The nurse assisted us as we tried to help him wash himself. The rehab staff need to get baseline measurements of his ability to perform hygiene and other daily activities so that they can measure his progress during his rehab stay.

I stood next to him the entire time so that I could help keep his tracheostomy fistula covered to prevent water from entering his lungs, and also to keep him from falling off the bath bench, which has no seat belt. As we were trying to let Drew as much as he could, I ended up getting a shower also and I was drenched from the knees down. However, the shower was much better than the bathtub because Drew was simply too tall to fit safely in the tub they have here.

His girlfriend arrived a little after 7:00 and we tried to stay out of the way as much as possible. Drew was so happy and excited to see her and they sat and visited about school, friends, choir, and other happenings. To finish out the evening, they played a game of Candy Land. His vision is so poor it is difficult for him to see much, but he could tell the colors on the cards OK and then his girlfriend helped him move his piece along the board. After the game finished, we started to watch the beginning of the BYU-Utah game, which Drew was excited to watch, but it started so late, he fell asleep before halftime. He had a pretty busy, exhausting, but good day.

Copper Hills Homecoming 2017

Rehab Team, Day #3 (Sunday, September 10th)

73 days since onset. Seizure count = Approximately 3 small seizures clustered together in the morning.

3:30 PM: I arrived from church back to the hospital just in time to see Dawn and Erin lifting Drew back into bed. He fell for the first time and luckily, his mother and sister helped him lower to the floor just onto his knees, but he scraped his left knee.

“He was sitting in the green recliner after he finished his afternoon snack,” his sister explained. “And all of a sudden, he stood up on his own.”

Dawn and Erin had helped Drew up out of bed to eat his afternoon snack (which was another heavy cream smoothie), but the problem with the recliner is that it doesn’t have a seat belt. He tried standing up on his own a few times, but this time they were cleaning up his snack and not ready.

Erin had stayed the night last night, and she was exhausted, so I encouraged her to try and take a nap before she had to drive back to school in Provo this evening. Dawn and I then finished situating Drew in bed, and then I went and talked to the nurse about the fall. She was not even aware it had occurred, but I figured the rehab staff better be aware because as he has regained some strength, he has also become more impulsive and stubborn about being able to get up.

6:15 PM: “Drew, does it taste good?” I asked him.

Drew started to nod his head, but then as he started to answer my question, he went to take a breath in and he inhaled the piece of chicken he had been chewing in his mouth.

He coughed and coughed and coughed, and then he finally gagged the chicken back out, but it also triggered everything else he had just eaten for dinner. I grabbed an emesis bag and handed it to him, helping him line it up to his mouth as he vomited.

Just as his legs and arms are weak, his mouth muscles are not used to chewing food, especially chicken. We also had reaffirmed that he really needs to focus while he tries to eat so that he can swallow properly and not get distracted.

More Homecoming 2017

Rehab Team Day #4 (Monday, September 11th)

74 days since onset. Seizure count = No seizures today.

3:05 AM: Drew finally fell back asleep. He awoke about 35 minutes ago and was trying to climb out of bed. He had thrown his pillows and blanket on floor, and then was trying to get up over the bed rail. Luckily, I awoke in time to stop him. The nurses had shut the door and closed the window blind on the door, so they were not aware that he was even trying to get up until I hollered for him to stop.

5:30 AM: Drew awoke again about 4:00 AM and he just finally fell back asleep. I sat for over an hour and watched to prevent him from pulling out his feeding tube.

6:50: Drew fell back asleep after waking up again at 6:25 after the nurses had finished working with him. He sleeps really good until about 2:00 or so, but then he starts waking up and having trouble sleeping. Hopefully the doctors can figure out something to help him sleep better at night.

11:00 AM: Drew was so sleepy, he couldn’t complete all of his therapy this morning and he fell asleep. Luckily the therapists have time in their schedule to try back later in the afternoon to make up the minutes he missed.

8:00 PM: The nurse posted Drew’s schedule tonight, and he has pretty busy days with a few rest breaks sprinkled in the mix. The therapists were able to get the rest of his therapy finished, and tonight is another shower. Of course it would be easier if we just did his shower for him, but that doesn’t help in the long run as he needs to be able to return to doing things for himself. His mother and I assisted him for the shower, and it would seem we might want to bring swim trunks or a change of shoes and socks because we were soaked from the knee down.

Rehab Team Day #5 (Tuesday, September 12th)

75 days since onset. Seizure count = No seizures today.

6:40 AM: Drew woke up at 3:15 AM today and just barely fell back asleep. I had to sit and watch him because he kept trying to pull out his feeding tube, pull of his pulse oximeter, and pull of the bandage over his tracheostomy fistula.

“Drew, you really need to get some sleep.”

“Why are you mad at me, Dad?”

“I’m not, Drew,” I said. “I just want you to be able to get the rest you need so that you can be able to do all of your therapy.”

7:30 AM: Despite the lack of sleep last night, Drew is on a schedule and the nurses said we need to get him up and going so that he can be ready for OT at 8:30. I think I am just as tired as Drew and I am not sure how we are going to make it through the day. It takes a lot of effort, but finally we are able to get Drew up to his wheelchair to start working on his blueberry smoothie for breakfast.

2:30 PM: I plead with the doctors to try and change his nighttime medication and nursing schedule to help improve his rest at night. He struggles to participate in the therapy when he is so tired, so the doctors were going to try and change some of the timing of the medications. Fortunately today, Drew was able to take a long nap so that he could participate in the afternoon therapy sessions, but unfortunately he slept through his lunch and they just had to give it to him through his feeding tube. At any rate, this afternoon in physical therapy, Drew was able to ride the bike outside for the first time.

http://www.jeffreyolsen.com/wp-content/uploads/2017/09/IMG_0151.mov

 

7:00 PM: Every Tuesday afternoon, the Rehab Team meets to review the rehab patients and their progress towards their goals. Today was the first meeting where they discussed Drew and his initial findings, and based upon their evaluations and assessments, they believe he will need about 4 to 6 weeks of rehab. I figured he would need at least a month anyway, but it all depends on how quickly his brain recovers.

Also, on the weekends, some of the patients can get a pass to leave the hospital for a few hours to try a community activity, such as the zoo or a store. However, after their discussion, the rehab staff decided that Drew is not yet ready for a weekend pass because of how impulsive he has been, and they want him to be a little safer and calmer before we take him for a short trip out of the hospital.

Lastly, today in Music Therapy, he started learning the songs for “My Fair Lady.” Unfortunately, his eyesight is not good enough for him to read the music or small print, so his mother plans to write the words larger. Without being able to see the words or musical notes, they struggled to get through two lines of the first song today. It’s a good thing they have 2 months to prepare for the musical.

Rehab Team Day #6 (Wednesday, September 13th)

76 days since onset. Seizure count = No seizures today.

2:30 AM: I awoke to the sound of the bed alarm. I sat upright and saw Drew’s legs hanging over the bed rail and off the side of the bed. I ran over and lifted his legs back onto the bed.

“Dad, what are you doing?” He asked.

“Time to sleep, Drew,” I said. “You need to stay in bed.”

“Dad, I need to get up.”

“No, Drew, it is the middle of the night and you need to go back to bed.” Luckily he fell back asleep in only 20 minutes this time.

5:30 AM: “Dad! Dad!”

“Yes, Drew,” I said as I groggily sat up on the side of the fold-out couch.

“Dad, I need to go to the bathroom.”

This was his first time since he was sick that he felt the need to use the rest room, and if he could start to urinate on his own, he would no longer need the nurses to straight catheter him every 4 to 6 hours.

I jumped over to his bed and put his gripper socks on and we made our way to the bathroom. Unfortunately, after 20 minutes, he still couldn’t go and we had to make our way back to his bed without success.

10:30 AM: Fortunately, Drew went back to sleep from 6:30 to 7:15, and then we had to start getting him up to the wheelchair to have breakfast. He drank his whole strawberry smoothie for breakfast (although it took about 40 minutes to drink about 8 ounces), and he did really well getting himself dressed with OT and he walked to the therapy gym. He then came back to his room for a rest.

4:30 PM: Unfortunately, even with the seemingly better night sleeping, Drew took a 4-hour nap and slept not only through lunchtime, but also through his afternoon PT and OT sessions. Speech therapy was able to get some time in, but he then rushed up to Music Therapy for some more practice singing “My Fair Lady.”

Rehab Team Day #7 (Thursday, September 14th)

77 days since onset. Seizure count = No seizures today.

7:15 AM: “Dad! Dad!”

“Yes, Drew,” I sat up on the edge of the fold-out couch.

“What time is it?” Drew asked.

“7:15 AM,” I told him, and then I realized he was trying to climb out of bed.

“I’m late for school,” Drew hollered at me as he tried to climb over the bedrail. “Seminary started at 6:00.”

“Drew, Drew…,” I said as I grabbed his legs and pushed them back on the bed. “You’re in the hospital. Remember?”

“What?” He asked.

“You’re in the hospital,” I repeated. “You don’t have to go to school yet. They know you’ve been sick.”

It took about 10 more minutes, but the nurse and I were finally able to convince him that he did not have to go to school today.

6:30 PM“This is all I get for dinner?” Drew said as he squinted down at the plate in front of him.

His mother tried to encourage him and explained, “There’s some scrambled eggs, part of an avocado, salsa, and ‘milk’ — you like all those things.”

“This is all I get for dinner?” Drew repeated. I looked at the plate and was a little surprised at how little they had brought him.

“We really need the doctors to change this diet,” I said. “There is no way the 4.5 to 1 ratio is sustainable, and he already is so sick of the lack of options and he hasn’t even been eating real food for one week yet.”

9:00 PM: Drew had a few friends from school visit tonight, and he enjoyed the company for the most part, but by the time they finished, he was super tired. His words were becoming more slurred, his eyes were half-open, and he was having a really hard time remembering words or making sense. The doctors ordered that Drew should not have more than 2 visitors in the room at a time (parents not included) — including doctors and other medical staff — so his friends had to rotate through a couple at a time.

Drew laughed and they laughed and overall it was good, but at some point, I started worrying that when he does go home and back to school, there will be many kids laughing AT Drew and not laughing WITH him. Between the prolonged seizures and the brain injury, it may take many weeks for him to return to normal. It is amazing that he can still read and write and do multiplication, but he cannot remember he is chewing food or cannot realize when his bladder is full or realize he is not safe to stand up without help. I suppose that will all just take time, but we are so physically drained, we are sure praying that these things all heal sooner than later — especially before we are supposed to take him home next month.

IMG_0166.jpg

Drew’s Eagle Project — August 2015

Rehab Team Day #8 (Friday, September 15th)

78 days since onset. Seizure count = No seizures today.

7:45 AM: “Another smoothie?” Drew said as he sat and squinted at the cup in front of him on the tray. “This is like my 50th smoothie.”

Because the diet is so extreme, he gets a “smoothie’ four times per day, and it consists basically of 8 ounces of heavy cream, an egg, and a little bit of fruit. I would be sick of them too if I were Drew.

9:45 AM: “It looks like his bedsore has stalled,” the Wound Nurse told Dawn. “It really hasn’t improved much the past couple of weeks.”

“What does that mean?” Dawn asked.

“We may have to try something more extreme next week,” she said. The Wound Nurse then told my wife several things we could try to help it heal, or things we should be doing.

“Why are you telling me all of this?” Dawn asked. “Shouldn’t you be telling this to his nurse?”

“Well, you can help also,” the Wound Nurse explained.

“We have at least another month here,” Dawn said. “And we were hoping his bedsore would simply be healed by then. I really think you need to be telling his nurses what to do, and if he still has it next month, then we can talk about things to do at home.” Dawn later broke down and cried, feeling so overwhelmed at the possibility of yet one more medical concern she would have to care for when Drew goes home.

9:00 PM: He actually had a really good day with all of his therapy. He slept better last night, and that carried over into a better morning. However, he only had a 15-minute nap this afternoon, and he struggled to stay awake while he ate dinner (he couldn’t finish it because he was too tired). We got him into the shower again tonight and it went a little better.

Grandma and Grandpa visited again tonight, bringing some take-out Chinese food for Dawn and myself to eat while they sat with Drew.

As we later talked, Drew’s grandmother asked, “So do the doctors know if his vision and hearing and everything will be better by the time he goes home?”

“No,” I shook my head. “They really have no idea.”

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It All Started With a Fever, Part 20

The Sub-Acute Phase: Crazy Dreams and Crazy Diet

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.

Neuro Floor, Day #16 (Saturday, September 2nd)

65 days since onset. Seizure count = 2 Focal Seizures today.

2:00 PM: Drew really likes riding the bicycle for therapy. It is a three-wheel bike with two seat belts to help with trunk support and straps on both pedals to keep his feet in place. One therapist has to help from behind the bike to keep Drew’s head and trunk from sliding while the other therapist walks/runs next to the bicycle to help Drew steer. Again, his left arm is still quite weak, so he keeps veering to the left. The therapists were really trying to let him do more of the steering this time since it was a Saturday and there were fewer people on the pedestrian bridge between the hospital and the outpatient medical building across the street.

Getting ready to ride.

4:00 PM: “Never mind, Alex,” Drew said in frustration.

“What’s wrong?” Alex asked. He was helping Drew remember how to play Clash of Clans on his iPhone.

“My eyes can’t see the screen very well,” Drew said.

“Hold on,” Alex said. He crossed the room and pulled his iPad out of his backpack. After a few moments, he had the game pulled up on the bigger screen and tried again with Drew.

“I still can’t see it, Alex.” They tried for several minutes with the screen held only inches from Drew’s face, but he could not make out any of the details. “I can’t see it.”

As he went to return his iPad to his back backpack, Alex passed me in the chair watching them and he said, “Sad part is that Drew was the one that taught me how to play Clash of Clans when I got home from my mission last sumer. We would play together and kick butt all the time, even when I was in Kentucky we could team up together. Now he can’t play….”

“Hopefully his eyes will recover soon,” I said. Although at this point we are not certain if the visual problems are due to injury to the parts of his brain that process visual input, or if the problems stem from his eye muscles or focusing. At some point the doctors will have ophthalmology return to screen his vision and make recommendations.

7:20 PM: “Dad, the game starts in 10 minutes.”

Drew was not happy with me and his mother because we insisted he get out of bed and go for a quick wheelchair ride to the patio. He hadn’t been out of bed since the bike ride in therapy and we knew he wouldn’t get up once the game started.

“We’ll be back in time for kick-off,” I said to Drew as we rolled down the hall to the elevators.

“Is that Drew?” Two nurses from the ICU approached us from the other end of the hallway as they had just finished shift change.

“Hello,” Drew said as he waved his right hand. “My name is Drew. Who are you?”

“I took care of you in the ICU a few weeks ago while you were sleeping,” the nurse explained to him. I recognized both of them and smiled, but Drew had no idea who they were (again, not sure if it was due to his eyesight or his memory, but probably a combination of both).

After we talked a few minutes, the nurses had to leave. “We’ll see you later, Drew.”

“OK,” he replied and waved his right hand, “Bye.”

As the nurses continued walking toward the stair leading to the lobby, the one nurse turned to the other and said, “Well that just made my day!”

8:45: One of the rehab doctors this morning challenged Drew to an arm wrestle to test his strength, but he struggled to even hold his grip, especially on the left hand. So the doctor instead challenged him to a thumb war, and Drew actually won both the right hand and the left hand. The doctor was amazed and assured me he had been trying to win, but Drew beat him. As a result, Drew challenged the two male nurses tonight to thumb wars as they gave him his medicines. He still gets the 4 Anakinra shots along with 6 seizure medications, vitamins, and an antibiotic all crushed up and administered through his feeding tube, so it takes quite a while for all of the medicines to be given. However, Drew actually beat both of the nurses as well. The one nurse laughed as Drew pinned him and said, “he has such long thumbs, and they are strong.”

Drew actually became more interested in the thumb wars with the nurses instead of the BYU football game against LSU on TV because he really couldn’t see the screen very well. We had to keep letting him know the score and clock and other info about the game because he couldn’t read them on the screen. However, within minutes of getting his last medication, he fell asleep just before halftime. We turned the TV off so he could sleep and his older sister, Erin, volunteered to stay with him so the rest of the family left for home as they settled down for the night.

Drew’s brother helping with the therapy session activity.

Neuro Floor, Day #17 (Sunday, September 3rd)

66 days since onset. Seizure count = 1 Focal Seizure today.

8:30 AM Erin reported that Drew awoke at 1:30 AM, 3:30 AM, and 6:30 AM for various reasons, so we talked to the doctors and nurses about scheduling some rest breaks during the daytime to help him stay awake later into the evening. We also agreed to let them give him some Melatonin to help him get back into a better sleep pattern at night. Once he was up for good at 6:30 AM, his sister turned on The Amazing Spider Man Part 2 for him to watch. She played the movie on her laptop computer and set it up on two pillows on his lap where he can see the screen better, even if he can’t make out all of the details.

11:00 AM: Drew went to church at the hospital with his mother and older sister for the first time this morning. He couldn’t take the bread, but he took the water as the Sacrament was passed.

When I returned to the hospital later in the afternoon, I asked, “So how did you like church, Drew?”

He answered, “I couldn’t really understand what the people were saying and a lot of them just cried.” As today was the first Sunday of the month, church consisted of a Fast and Testimony Meeting, and his mother explained that many of the people who shared their testimonies either talked too fast or too softly for Drew to be able to understand what they were saying.

6:30 PM: When I returned to the hospital after my church meetings were finished, his mother reported that Drew sat up in a chair next to his bed for a couple of hours in the afternoon and used the dry-erase board to work on some math, writing, and memory cues. He also watched a little bit of “My Fair Lady” with his mother and sister. I had to laugh because he challenged his brother and uncle and some of his visitors to thumb wars.

Drew loves Music Therapy.

Neuro Floor, Day #18 (Monday, September 4th)

67 days since onset. Seizure count = 1 Focal Seizure lasting about 70 minutes

9:15 AM: Drew started having a seizure at 8:58 this morning. It was a Focal Seizure where his eyes rolled up and deviated to the side, but it was quite sudden. He had been fully awake and talking to me and the nurses. We were going to get him up into a wheelchair for the morning because we found out with the Labor Day holiday today, therapy would not be coming to work with Drew until after lunchtime. So the nurse had just rolled Drew’s wheelchair into his room and I knelt down to remove the leg rests. When we turned back around to help Drew, he was having the seizure.

“Are you sure it’s a seizure?” The nurse asked me.

“Yes,” I said. “This is what the last several seizures have looked like, although sometimes he has more mouth twitching.”

A few moments passed as we waited for the seizure to stop, and at one point, his right eye stayed rolled up and deviated to the right while his left eye rolled downward and deviated in the opposite direction and looked really freaky. At that point, seven minutes had passed without the seizure breaking, so the nurse notified the attending doctors and she went to go get his “rescue medicine,”  which is a dose of Ativan. We had requested more specific guidelines from Neurology as to when he could get a “rescue” medicine to help break him out of a prolonged seizure, or cluster of seizures, and they had specified for him to get the medicine if he has a General Tonic-Clonic (Grand Mal) that lasts more than 5 minutes, or a Focal Seizure that lasts more than 10 minutes. By the time the nurse returned with the medication, 12 minutes had passed without the seizure stopping, so she gave him the medicine through his IV.

9:35 AM: The doctors just gave Drew a third dose of Ativan to try and stop this seizure. The first two doses seemed to work for about 30 seconds each time, but then he went right back into the seizure.

“If we cannot get the seizure to stop, we may have to transfer him back to the ICU,” the doctors told us.

“No,” Dawn said as she leaned closer to Drew and squeezed his hand. “Come on, Drew. Wake up!” Tears were streaming down her cheeks.

9:55 AM: Despite the third dose of Ativan, his seizure did not stop and the group of hospitalist doctors in the hallway talked with the Neurology doctors. They agreed to try one more medicine — a dose of Fosphenytoin — which is more powerful, but also has more side effects.

“If the Fosphenytoin doesn’t work, or if his breathing starts to becme suppressed with all of the medicines on board, we will have to move Drew to the ICU,” the doctors told us while the nurses worked frantically to hook up the IV pump that would administer the medicine. “We also need to hook him back up to an EEG for the next several hours to help us watch for any more seizure activity.”

Dawn collapsed in a chair and started to sob. I tried to comfort her and rubbed her shoulders as we watched the commotion going on around Drew’s bed. “Don’t cry,” I said to her. “It will be all right. Drew will pull out of this.”

“Today wasn’t supposed to be like this,” she said. Then angrily, she looked up at me and added, “And there’s no way I want to go back to that hellish nightmare.”

I am fearful that if Drew does have return to the ICU, Dawn may have some PTSD and be pretty traumatized by the setback.

11:30 AM: It took about 15 minutes for the full dose of Fosphenytoin to run into Drew’s IV and it appears to have finally stopped the seizure, so we were able to avoid transferring back to the ICU for the moment. However, all of the medicines have made Drew extremely sleepy and dropped his blood pressure down to 85/42. The nurses are pushing fluids through his IV to help raise his blood pressure back up. Meanwhile, the doctors are running a bunch of tests to try and figure this out, and they are getting ready to hook him back up to an EEG for a little while. They plan to watch him closely for the next several hours to make sure his seizure has stopped and his breathing stays good.

9:00 PM: Drew is doing much better tonight. The Ativan is finally wearing off and he is back to talking and laughing and hugging everyone. He helped us sing “Happy Birthday” for my birthday tonight. He had one 30-second seizure this afternoon, but otherwise his seizures have been fine since the big one this morning. They really coudn’t identify any reason for the prolonged seizure, and the Neurology doctors are not even sure they want to call it a seizure, but rather they are referred to it as an “event.” His labs came back good. His Phenobarbital level was in range. Nothing else really changes, so they aren’t sure what cause the “event.” Hopefully we are back on schedule tomorrow with rehab and maybe even removing the tracheostomy, but we’ll see what the doctors decide.

Neuro Floor, Day #19 (Tuesday, September 5th)

68 days since onset. Seizure count = No seizures today.

3:00 AM: “Dad,” Drew yelled. “Dad!”

“What’s the matter Drew?” I answered from the fold-out couch in the corner of the room.

“Get her away from me,” Drew yelled as he tried to hit the nurses’ aide sitting beside his bed. At night, he continues to require a 1-on-1 nurses’ aide to keep him from pulling out his tubes.

“Drew, be nice,” I said.

“Get away!” Drew continued to yell and swing. “Dad, get me out of here!”

It took us several minutes to calm him down. Every morning he has been waking up between 2:00 and 4:00 and started pulling at his IV and feeding tube and breathing tube. He often forgets he is still in the hospital and starts swinging at the nurses and aides, but I have been able to talk to him and calm him down. Luckily, he fell back asleep this morning after about 25 minutes of yelling.

4:00 PM: The EEG came off about 2 hours ago and his hair is all gummed up with the glue from the 19 different leads that had been attached to his scalp. The nurses and his mother plan to give him a bath this evening and work on getting all the EEG glue washed out of his hair.

9:00 PM: No seizures today. Drew was able to participate in all of his physical, occupational, and speech therapy sessions, but he did fall asleep during both speech therapy treatments. His speech has been a little slurred and his responses a little delayed today, so they think he may still have a little bit of the rescue medicines in his system, but overall a much better day than yesterday.

The doctors told us today that they plan to try and increase Drew’s therapy treatments this week to see if he can tolerate 3 hours per day. So starting tomorrow he will have separate PT, OT, and Speech treatments in the morning and again in the afternoon, as well as Music Therapy from 3:30 to 4:30. His Rest Breaks will remain the same for now. Even though his tracheostomy was capped all day today with no problems, the doctors are talking that they may postpone taking the tracheostomy out for another day or two just in case he has more seizures like yesterday, but we will talk to them tomorrow and try to move it up since he had no seizures today. It just goes to show that so long as the seizures stay away, he will continue to do great.

Neuro Floor, Day #20 (Wednesday, September 6th)

69 days since onset. Seizure count = No seizures today.

2:45 AM: I awoke to the sound of a ‘crash.’

“Where do you think you are going?” The nurse’s aide said as she ran into our dimly-lit room. I then realized that Drew had swung his legs over the bed rail and was trying to climb out of bed.

“Whoa,” I said as I jumped up off the fold-out couch and ran to the side of Drew’s bed. I arrived before the nurse’s aide and grabbed his legs to keep him from getting out of bed. “Drew, stop.”

“Pull me up, Dad,” Drew said, speech slurred, eyes half-open. “Help me out of here.”

“No, Drew,” I said. “You need to stay in bed.”

“Get me out of here, Dad.”

“You’re OK,” the nurse’s aide said. “Let’s go back to sleep.”

“Help me, Dad.”

“I’m right here, Drew.” I pulled up a chair and sat next to his bed, holding his hand. It took about 30 minutes for him to fall back asleep again.

4:00 AM: Just as I was falling back asleep, Drew tried crawling out of bed again. We stopped him and repeated the same routine to keep him in bed and help him fall back asleep.

7:00 AM: “Can you help me brush my teeth, Dad?”

“Sure, Drew.” I handed him his tooth brush with a pearl of Ketogenic-friendly toothpaste and assisted him with brushing and rinsing his teeth.

After he finished putting on chap stick, as we were waiting for nursing to bring his medications and occupational therapy to start at 8:30, we sat talking.

“Did you have a bad dream last night?” I asked Drew.

“Yeah,” he said. “I had a dream that I was in a tomb full of mummies and I was trying to get out of it.” He continued to describe the dream to me, and then it made perfect sense why he was confused and trying to get out of bed a few hours earlier.

4:00 PM: We didn’t even have to discuss the tracheostomy schedule with the doctors. The Respiratory Therapy Director came into Drew’s room this afternoon and announced that it was time to remove the cannula. She explained that based upon his capping trial tolerance, there was no need to postpone taking out his tracheostomy, so she carefully removed it and covered the fistula with a small bandage. She explained that the hole will heal over time on its own and to just keep it clean and covered so nothing enters into his throat and lungs until it heals.

When I arrived from work, Drew’s eyes lit up and he said, “Hey, Dad, I have a hole in my throat.” The bandage over the hole was flapping around the edges as Drew’s voice was nearly blasting the cover off. His words were breathy because of the hole in his throat, but I could make out what he was saying.

Lastly today, with the tracheostomy removed, speech therapy scheduled him for a swallow study on Friday and she brought in some real food to start practicing eating. Her options were limited thanks to his Ketogenic diet, but she brought in some fresh avocado and Drew loved it.

Removing Drew’s tracheostomy cannula.

Breathing tube out!

Neuro Floor, Day #21 (Thursday, September 7th)

70 days since onset. Seizure count = No seizures today.

7:30 AM: Drew had a really bad night again last night. He woke up screaming for me three different times. The nurse’s aide was no longer able to help after 6:00 AM this morning, so I was sitting next to Drew’s bed watching him when he started talking in his sleep.

“It’s still looking at me, Dad.” His eyes were half-open and it seemed like he was looking through me at something on the wall.

He recoiled and tried to move away from me in the bed, “Help me, Dad.”

“I’m right here, Drew.” I held his hand as he slowly fell back asleep.

8:25 AM: The nurse just finished giving Drew his medications, and we had a few minutes until the OT would arrive to start his treatment, so we were talking again and Drew was telling me about the crazy dream he was having this morning.

“You were there with me, Dad. We were helping Santa Claus in his sleigh, and as we were flying along with the Christmas Spirit, I looked down and saw a bunch of baby moose. We stopped to look at them, and then I saw a big moose that was trying to kill me with his antlers.”

On the one hand, Drew is finally getting more sleep. But on the other hand, he is having really vivid, crazy dreams. Hopefully these will continue to resolve as his brain heals.

4:45 PM: So Drew will be officially transferring to the Rehab Team tomorrow afternoon. He will be getting evaluated and tested by the Rehab Team over the Weekend and then on Tuesday, they will have a better estimate of how much longer he will be in the hospital. Right now they are estimating 3 to 5 weeks in Rehab, and then outpatient therapy once we get home. Because of his brain injury, he will need to be supervised 24/7 for several weeks after he returns home. The plan is to keep him on all 7 of his medicines and the Ketogenic diet for at least 2 months before making any changes. As the Rheumatology doctor explained, they feel like his inflammatory system has finally calmed down and they want to keep it calm while he rehabilitates. Down the road, they can revisit his diet and medicines to see if they can be decreased without allowing the seizures to return, but for now, status quo — and really, other than the one bad seizure last Monday, his seizures have been doing really well.

Drew with his older sister and brother in the waterfall garden.

Rehab Team, Day #1 (Friday, September 8th)

71 days since onset. Seizure count = No seizures so far today.

10:00 AM Drew had a pretty good morning so far. He slept a little better last night because I kept the light above the sink on all night. He still woke up at 2:00 AM thinking he had to go to school, but with the light on, he was able to remember more quickly that he was in the hospital and It took less time to calm him down. He also got up with OT this morning and got himself dressed (with a little help) and then PT worked his legs really hard in the gym. He came back almost asleep in the wheelchair, so we laid him back down and he is taking a nap. Swallow study is supposed to be at 11:00 and then this afternoon he will be officially transferred to Rehab.

Noon: Drew passed the Swallow Study with flying colors. The Speech Therapist gave him some water and pudding mixed with barium, and then she and the Radiologist watched on X-ray as Drew swallowed. He needed a little water to wash some residual pudding down, but otherwise he swallowed without coaching or problems.

Drew’s first real meal, even if it is Ketogenic.

3:30 PM: Drew had his first meal with Speech Therapy this afternoon. Once he was cleared by the Swallow Study, he was allowed to practice a full, Ketogenic tray of food. The Speech Therapist brought a tray of chicken, bacon, avocado, salsa, butter, and heavy cream. Drew freaked out with the smell of the bacon and said it was going to make him throw up, so we had to get rid of the bacon initially. He ended up eating the chicken, salsa, and avocado with the butter and heavy cream mixed in to raise the fat ratio. He also drank some water. He will start getting some trays now at meal times to see if he can start eating, but because of his crazy, Ketogenic diet, it will be heavy on fats with very few proteins and practically no carbohydrates. The Speech Therapist laughed and said Drew is the first Ketogenic patient she has worked with here who was actually eating the Ketogenic food and not just getting all of his nutrition through his feeding tube. We’re all going to be learning this strange diet together since Drew will be on it for at least two months.

4:30 PM: The Rehab Doctor stopped in to talk to us briefly. She has written the orders and now Drew has been officially admitted onto the Rehab Team.

WELCOME TO REHAB!!!

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It All Started With A Fever, Part 19

The Sub-Acute Phase: Baby Steps

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.

Neuro Floor, Day #9 (Saturday, August 26th)

58 days since onset. Seizure Count = 5 Focal Seizures today.

7:30 AM: “Drew, your bladder is full,” I told him after the nurse finished scanning his bladder with an ultrasound. “Can you try to go to the bathroom?”

“I don’t have to go right now,” Drew said. He has not regained full sensation and he continues to have weakness and limited motor control throughout his body, so we’re trying to practice and facilitate his bladder muscles.

“Drew, if we don’t try to go to the bathroom,” I explain to him, “then the nurses will have to use a catheter because your bladder is full. Can you try to go?”

“I guess,” Drew shrugged his shoulders, “but I really don’t have to go.”

I helped Drew sit up on the side of the bed. As he rolled and sat up, I held his head while he helped to pull his trunk up and then I helped swing his feet out of bed.

“Go ahead and count to 3, Drew, and then we will stand up,” I say as I stand in front of him, his hands on my shoulders, and my arms under his shoulders holding his trunk steady.

“One… Two… Three,” he said and then he leans forward and I help lift him to stand up on his wobbly legs. I held his trunk upright as he struggles to shift and pivot his feet, but then eventually he is lined up with the shower chair (which has wheels) and we slowly lower down onto the seat. I then rolled him into the bathroom, and we repeat the process to stand and pivot to the toilet. We have to shove a pillow behind him so he can lean back against the plumbing, and then he holds onto some grab bars on the wall to steady himself. Even still, either his mother or myself have to help him hold his head up, especially as he begins to fatigue.

Despite trying for several minutes, he cannot release his bladder to empty. As he becomes more fatigued and starts leaning, we reverse the process and get him back to bed before he is too tired to help us. The last thing we need is for him to have a seizure or fall and injure himself and prolong our hospital stay.

2:30 PM: We repeated the attempt at the bathroom three more times in the morning, but still no success. However, he was so tired from all of the transfers, he fell asleep and the PT and OT had to reschedule his therapy appointment from 10:00 to 2:00. We had to work to get him to wake up, but once he was awake, he readily agreed to participate. He worked with them on unsupported sitting and rolling on the mat, and then as an added bonus, he played catch with his girlfriend, M❤️❤️❤️❤️. He felt ready to have his friends visit, but we thought we better start small and make sure he didn’t freak out again. So M❤️❤️❤️❤️ came up this afternoon and not only did they have a nice visit, she helped inspire him to work harder in therapy.

Playing catch in physical therapy with his girlfriend.

Neuro Floor, Day #10 (Sunday, August 27th)

59 days since onset. Seizure count = 3 Focal today (one for 7 minutes)

5:30 PM: “I was asleep for 7 weeks and 3 days,” Drew told his friends from school. “I woke up on August 24th.”

I returned from my church meetings this afternoon to find Drew’s room full of visitors, mostly his aunts and uncles and grandparents, but he had his attention focused almost exclusively on three of his friends from high school.

“I need you to sign me up for auditions tomorrow,” he said to his best friend. “I won’t be at school tomorrow, but I hope to be able to make it in time for the auditions.”

His friends kind of looked at his mother and I wondering if this was true or not.

“We’ve told him he won’t make it to auditions,” his mother said,  “But he keeps hoping they’ll figure out some way for him to go.” The auditions at the high school are for this year’s musical, ‘My Fair Lady.’

His friends did bring some of the sheet music for the audition, and they sat and sang with him a few bars of “On the Street Where You Live.”

A short time later, as his friends prepared to leave, his mother tried one more time saying, “Drew, you won’t be able to leave the hospital tomorrow for the audition.”

“I know,” he said. “That sucks.”

8:30 PM: This evening we got Drew into his wheelchair and took him for a ride out to the waterfall garden in front of the hospital, and while he was out there, he saw the parking garage and wanted to go see his car. So his mother and brother and sister rolled him out to his car for a few minutes and he looked at his old car. At least once per day, we try to go outside with Drew and take in some fresh air. Once he returned to his room, he was pretty tired, but he was still able to play catch with his brother for about 45 minutes. They would throw a soft football back and forth as they talked about remembering things like his address and movies and different things they used to do together.

This morning, the doctors said that they plan to start “capping” his tracheostomy tomorrow for a couple of hours. Each day, they will gradually increase the time his tracheostomy is capped and hopefully after a week or so, he will be able to get the tracheostomy removed. We continue to be very blessed with his progress and pray it continues at such an incredibly fast rate.

9:30 PM: “Can I have a hug?” Drew asked each one of his siblings and his mother as they prepare to go home. One by one, they lean over the rail of his bed and he grabs them with his arms and gives them each a hug and a kiss on the cheek.

Lastly, we resumed one other tradition to close each day with a family prayer. Since Drew is in the hospital, we gather around his bed with folded arms and bowed heads and say family prayer. Last night, he kind of watched us with his eyes open, as if he wasn’t sure what we were doing. Tonight, however, he closed his eyes and bowed his head along with the rest of us, and when his sister said, “Amen,” he said “Amen” as well.

Neuro Floor, Day #11 (Monday, August 28th)

60 days since onset. Seizure count = 1 Focal Seizure today.

9:30 AM: Drew’s mother arrived at the hospital just as the fourth team of doctors were finishing their assessment, and Drew looked exhausted, with slurred speech, half-open eyes, and delayed responses.

“I’m not sure what we can do to get him to sleep longer at night?” I asked. “He was so tired last night from all of his visitors that he fell asleep by 8:45 PM, and then he woke up this morning at 4:15 AM and has been awake since.”

“Are you sure it was 4:15 this morning?” She asked me.

“Yes, because he kept trying to pull all of his tubes out and the nurse assistants kept telling him to stop,” I said. “So I woke up also, and neither one of us has slept since then.”

“Well, that is going to make his physical therapy hard again,” Dawn said as she shook her head. The physical and occupational therapists have been trying to work with Drew each weekday at 10:00 AM, but about half the time he has fallen back asleep or is too tired.

“It doesn’t help that from 7:00 AM onward there are four different teams of doctors all taking turns examining Drew, as well as the nurses and respiratory therapy all coming in and doing assessments throughout the morning, asking him questions, testing his muscles and his memory, and so there isn’t much time for a nap until late morning when he is supposed to do physical therapy,” I said. “If only he could sleep until 7:00, that would be ideal, but not sure why he wakes up so early?”

Sure enough, by the time the physical and occupational therapists arrived at 10:10 AM, Drew had fallen back asleep and couldn’t wake up for them. They rescheduled to try back at 2:00 for his therapy session.

11:30 PM: So today, the doctors switched Drew from continuous feeding through his feeding tube to bolus feedings, which prepare him for a more-normalized routine to transition back to mealtimes. He continues to work with speech therapy on swallowing, but he is a ways away from trying to eat any food yet, especially on the Ketogenic diet (so we have been careful not to eat any food in his room in front of him). However, tonight was kind of a perfect storm and the result was him throwing up.

Drew was nearing the end of his dinnertime bolus feed when the nurse started to give him his evening medications through his feeding tube. We were also helping him to brush his teeth for bedtime, and as he was trying to rinse and spit, some of the water went down his windpipe and he started coughing. As he coughed, his gag reflex kicked in and he threw up all over his shirt. I quickly rolled him to his side and he proceeded to throw up all over his shirt and pillow. He threw up quite a bit, including half of his evening medicines. So after we got him cleaned up, the nurse had to go call the doctor and get orders to re-administer the medicines he threw up, and then pharmacy had to send them up again. Unfortunately, while I turned around to put his dirty clothes away, I turned back around to find that Drew had pulled out his IV (“I thought it was some dead skin,” he said). Finally, the nurses were able to give him the rest of his medicine and he was cleaned up and ready for bed, but it was pretty late and I couldn’t wait up for the IV Team to come give him a new IV.

Up to a chair bright and early, dressed and ready for the day.

Neuro Floor, Day #12 (Tuesday, August 29th)

61 days since onset. Seizure count = 1 Focal Seizure today.

9:30 AM: I talked to the doctors this morning about trying to figure out how we can get Drew to sleep better at night. After he threw up last night and pulled out his IV, we didn’t get to sleep until almost midnight. Then the nurses had to come in at 4 AM to give him his Anakinra shots (which still hurt a lot) and then at 6 AM to do a bladder scan and insert a catheter to help him empty his full bladder. Drew and I were both exhausted from lack of sleep and a steady stream of healthcare workers. As Drew gets tired, his speech and memory and attention definitely get worse. The doctors’ initial solution was to cut down on his daytime naps, but I told them we can’t cut down on naps until he is sleeping better at night. We’re both getting interrupted so many times, the daytime naps are a natural result (although I don’t get a nap because I have to go to work). After some discussion, they agree to consolidate all of his medicines and shots at 8:00 and to decrease the frequency of some of his vital signs and bladder scans.

5:30 PM: “Do you like my shoes?” Drew asks the nurse. He has already asked her this same question three times today, but either he can’t recognize her face or he has forgotten that he told her, so he is asking her again.

“Yes,” the nurse answers, “those are nice shoes.” She nods politely at his orange and gray high-top tennis shoes.

“These shoes are size 13 and they only cost $30,” Drew says as he points at his feet. “And can you believe they came from Wal-Mart?”

“No way,” the nurse says to him.

“Yes, Wal-Mart,” Drew said. “They are freaking sweet shoes.”

His brother turns to me and says, “You know, the old Drew would never buy shoes at Wal-Mart.”

“I know,” I replied. “After all he has been through, I’m glad to see him get excited about anything.”

Neuro Floor, Day #13 (Wednesday, August 30th)

62 days since onset. Seizure count = No seizures today.

11:00 AM: Drew walked today in therapy! He was unsteady and ataxic, but he was able to take 5 steps as I and his physical therapist helped him. His right arm and leg are definitely stronger than his left arm and leg (Which is why Neurology wants to do another MRI of Drew’s brain in the next week or so) and his trunk and neck muscles are still weak, but he was able to walk to his wheelchair at the conclusion of his therapy session this morning. His biggest challenge right now continues to be his sleep and getting some rest breaks during the daytime that don’t interfere with his therapy sessions.

8:30 PM: Drew was lucky to have three of his friends from high school visit this afternoon. They talked to him for quite a while, pulling up pictures on their phones and talking about school and friends and dances and normal teenager topics. After a while, we got him up to a wheelchair and they escorted him to the waterfalls and garden in front of the hospital. He was very tired, but no chance he was going to fall asleep with three teenage girls visiting him. One of them gave him a gift before leaving, and he was thrilled to see that she gave him a “Star Wars” fleece blanket.

Enjoying a summer evening with three friends by one of the waterfalls.

Of course Drew did not make it to auditions yesterday for the high school musical, but his mother emailed the director and asked if Drew could still take part in the ensemble. Based upon his amazing progress, we are hopeful he can still participate to some extent with the musical when it is performed in November. The response was a resounding ‘yes’ and not only that, there were several tributes to Drew throughout the auditions as he was missed. We are so grateful to the faculty, staff, and students at Copper Hills High School for their wonderful support and encouragement. The director sent us the sheet music for the songs and the Music Therapist and his mother will start helping him learn the songs next week. Even though it is not one of the leads, he is really excited to be able to still take part in “My Fair Lady.”

Auditions at Copper Hills High School for “My Fair Lady.”

9:30 PM: “Is it OK if we have family prayer before we go home for the night?” Drew’s mother asked.

“Sure,” Drew said.

“I think it’s your turn, Drew,” I said. His younger sister was at work, and his brother was out with some friends, so it was just Dawn, Erin, and myself. “Do you think you can say the prayer tonight?”

“Sure,” he said. “Everyone close your eyes.”

He paused and waited for us all to fold our arms and close our eyes, and then he started, “Heavenly Father…. We thank thee for the day we had today….” In the end, he gave a short, but sweet prayer that left us all crying, especially as he asked for continued healing and progress from his seizures. As his mother and sister departed, there was a sweet spirit in the room that lingered long after the prayer finished.

Neuro Floor, Day #14 (Thursday, August 31st)

63 days since onset. Seizure count = No seizures today.

9:00 AM: “I can see a little better today,” Drew said.

“Really?” I asked. “Tell me what you can see on your wall…”

The wall opposite his bed is decorated with cards, posters, and pictures.

“I can see the big letters along the top that spell ‘We ❤️ DREW,” he said. “I can also see there is a red octa… shape with black letters in it.”

“You’re right, Drew,” I nodded. “There is a ‘STOP’ sign with some words in it.”

He proceeded to read some of the bigger letters and shapes, such as a large card with a heart and his name in it, but many of the smaller letters and words were blurry. He said he could mostly just see colors and blurry shapes, but not the details.

2:45 PM: Unfortunately Drew was asleep when the PT and OT team stopped by in the morning, but they rescheduled for this afternoon and it was worth the wait. They helped him onto a three-wheeled bicycle and then took him for a ride across the bridge that connects the hospital with the outpatient office building. He loved it. He struggled at times to hold his head up and sit tall, and he kept veering to the left because his left arm is weak, but for the majority of the ride he powered the bike and steered it himself. After he finished, his left leg and arm were visibly shaking from the exertion, but Drew hardly noticed.

8:30 PM: As the University of Utah football team played their first game of the year tonight, we worked our way through the crowd and traffic back up to the hospital to find that we had just missed two of Drew’s co-workers from his job at the Kearns Fitness Center. They brought a bundle of cards from his other co-workers, along with a stuffed monkey in swim trunks to remind him of work. He loved it. Initially, he did not recognize them, but as they talked, he quickly remembered them and started asking all sorts of questions about the staff, the remodel project, and other details about work. After they finished, he was elated that they stopped by to wish him well.

Drew called him “Super Monkey” because he thought he had a cape, so we converted the monkey’s shirt to a cape.

Neuro Floor, Day #15 (Friday, September 1st)

64 days since onset. Seizure count = 2 Partial seizures today.

8:30 PM: Another bike ride today in therapy, and Drew was loving it even if the pedestrians on the bridge to the outpatient building were not. I spent the day trying to help Drew’s brother fix a car for him to take back to school to Provo, so I wasn’t around as much during the afternoon, but his mother said it was a good day overall.

However, in the evening, we were struggling to keep Drew awake long enough to make an attempt at using the bathroom and taking a bath. He was so incredibly tired after his therapy and visitors and did not have a nap since the morning, so his speech was really slurred and his eyes were half open. To help him stay awake, we played catch with a nerf football with him. He can throw the ball pretty hard and accurately with his right hand, and he can catch it most of the time if it goes into his lap. We tried to keep him talking and throwing until the nurses were finally finished with their shift change and ready to help (also, the nurse was trying to get all of Drew’s medicines first, which delayed his help as he has to crush them and dissolve them all in water for his feeding tube). It took maximal effort to get him to the toilet, but within minutes of sitting down, he fell asleep and could not be woke up. It took me and the nurse and his mother all lifting him to get him back to bed, and even still, we barely got him there. From what I have researched, 50% of patients with brain injury have sleep disturbances, both in sleep initiation and sleep maintenance, and yet sleep and mental rest are critical to recovery from a brain injury. We continue to try and work with the nurses to figure out a schedule for Drew to help him improve his sleep.

Alex and Drew and Super Monkey. Drew is not happy his brother borrowed Super Monkey’s shades.

 

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It All Started With a Fever, Part 18

The Acute Phase: The “Miracle Boy”

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

“I believe there’s an inner power that makes winners or losers. And the winners are the ones who really listen to the truth of their hearts.” – Rocky Balboa

Neuro Floor, Day #3 (Sunday, August 20th) — 52 days since onset

5:00 PM: “What do we have to do?” Drew mouthed to me when I returned to the hospital after church.

He was lying in bed with half-opened eyes, surrounded by the rest of the family. I wasn’t entirely sure what he was saying, “Are you asking me what to do?”

“What do we have to do?” He repeated. This time his mother helped me to read his lips.

“We have to work on getting stronger and get better,” I answered.

“What do we have to do?” He asked again.

“We will work with therapy the next few weeks, and then we will get strong enough to go home.” I explained more slowly.

Drew shook his head in frustration. “Do you hate me?” He mouthed.

“Of course we don’t hate you,” I shook my head.

“Do you hate me?” He repeated.

His mother leaned in close to his bed, “We love you very much, Drew.”

“Do you hate me?” He looked like he wanted to cry.

“No, Drew,” I said. “We love you very much.”

I don’t think he understood.

8:00 PM: “Tell them to go,” Drew was mouthing to us as he repeatedly waved his hand toward the door.

M❤️❤️❤️❤️ and her parents had stopped by in the evening to visit, but Drew surprised us when he became upset and angry.

“Drew, be nice to them,” I said. “They drove all the way up here to see you.”

“Tell them to go,” Drew repeated. He closed his eyes and shook his head as he continued waving for them to leave.

“Drew, why don’t you want them to visit?” I asked.

He kept his eyes closed tightly and kept shaking his head no.

“Do you not want them to see you?”

He continued to shake his head no.

“Do you not want them to see you? Are you worried what they might think?”

Drew nodded his head yes. Despite any and all reassurances, Drew would not calm down and would not visit with them, so his visitors slowly filed out of the room and wished him well. Tears came to my eyes as I realized he was finally starting to became aware of his sickness and his condition.

“OK, Drew, you tell us when you feel you will be ready for your friends to visit.”

In the end, I suppose we have had 7 weeks to process and grieve, and now that he is finally waking up, Drew is starting to go through the same emotions as he processes how much his life has changed due to his illness.

October 2016

Neuro Floor, Day #4 (Monday, August 21st) — 53 days since onset

8:30 AM: After such a traumatic and emotional evening, Drew woke up in a better mood this morning. He would mouth to us that he was “A-OK” and flash us an OK sign with his hands and fingers. However, he did not remember where he was and I had to remind him he was still in the hospital. He still has not moved his legs much and is only showing a flicker of muscle movement in his thighs.

1:00 PM: Unfortunately, Drew’s feeding tube clogged this morning and the nurses worked for nearly an hour to unclog it, but in the end, they had to pull the old tube out and insert a new feeding tube. The process is rather uncomfortable as they thread the tube up through one of his nostrils and then down the back of his throat to his stomach. He squirmed and winced the entire time. Once they had it threaded, Radiology came and took an X-ray to check its placement. As a result, the morning medications were a few hours late, and he became really sleepy when the therapists came into the room to work with him.

7:30 PM: “Dad, do you remember where you parked our car?” Drew asked me as I entered his room. I was shocked to actually hear his voice — although it was raspy and barely audible.

I walked over to his bed and leaned in close. “Why, yes, Drew, I remember where I parked our car, but we can’t leave the hospital right now.”

“The Respiratory Therapists put in a smaller tracheostomy cannula this afternoon,” Dawn explained to me. “The smaller cannula will help him to wean off of the tracheostomy by building up his lung and diaphragm muscles. It will also allow Speech Therapy to put a valve on the end of the cannula to allow him to speak.”

“Dad, do you remember where you parked our car?” Drew asked again.

“Yes, Drew, I know right where I parked,” I answered. Then to his mother, I said, “sounds like he doesn’t need a valve to speak.”

“His lungs are strong enough that he started speaking to us tonight without the valve,” his mom said.

9:15 PM: As his mother, sisters, and brother were preparing to leave for the evening, Drew asked in his breathy, raspy voice, “When do I get to go home?”

“We’re not sure,” his mother answered. “We love you very much and will be back in the morning.”

“When do I get to go home?” He asked again.

“Soon, Drew,” I said. “Soon….”

Neuro Floor, Day #5 (Tuesday, August 22nd) — 54 days since onset

5:30 AM: I was awake most of the night watching Drew because he kept trying to pull out all of his lines and leads. He doesn’t even realize he is doing it most of the time, but just feels the tape on his skin and tries to pull it off. He nearly got his feeding tube out a couple of times, and he had such a hard time getting it replaced, I didn’t want to see him go through that again.

9:00 PM: Drew has been talking a lot today — with and without the valve on his tracheostomy. As he has been talking, we realized he has had difficulty remembering words and names. He even had to be reminded of his brother’s and sisters’ names. He worked with physical therapy today in the rehab gym and practiced sitting on the edge of the mat for about 15 minutes. He also worked with speech therapy and swallowed some sips of water and ice chips, but it was difficult for him to consistently direct the water down his esophagus and not his wind pipe. His mouth and throat muscles are just as weak as his legs and arms, but the doctors have been so impressed with how much he is progressing, they said he may be ready for the full rehab within two weeks so long as his seizures continue to remain stable. We started tracking his seizures to monitor the effectiveness of the medications, and he was down to only about 12 seizures on Sunday, then down to about 6 on Monday, and then only 4 so far today. Overall he has come a long way in only 6 days, but still a little way to go. I am sure Drew would have much rather been in school today.

First trip outside the hospital in nearly 8 weeks.

Neuro Floor, Day #6 (Wednesday, August 23rd) — 55 days since onset

11:00 AM: Unfortunately, Drew had a seizure about 20 minutes before the physical and occupational therapists came in to work with him, so he was kind of sleepy and tired in his post-icthal state. They were able to get him up to the cardiac chair and then both therapists helped him to slide from the cardiac chair over to the mat in the corner of the rehab gym. The gym is a large, open space with mirrors, white walls, white cabinets, three mat tables, and various other pieces of equipment, such as adaptive bicycles, practice stairs, and swings. The therapists have been working with Drew on unsupported sitting, kicking a ball, throwing a ball, rolling, and lying prone on the mat.

Noon: Drew just finished working with the speech therapist. She was able to attempt feeding him with some Ketogenic-friendly sour cream that had been dyed blue. Drew did great with the first two swallows, but the third swallow, he kind of inhaled as he tried to remove the sour cream from the spoon. He sat for a couple of minutes with a stunned look on his face as he realized something wasn’t right, but he couldn’t figure out what to do. After the speech therapist coached him on clearing his throat and coughing, it seemed he was able to redirect the sour cream. However, a minute later, he coughed again and blue foam came out around his tracheostomy.

5:00 PM: Drew’s favorite part of the day is Music Therapy, and today he sang along with the speech therapist for the first time instead of just listening. The songs are simple and familiar to help the patients remember, such as the alphabet song and nursery rhymes, and even still, he would often echo the words and need frequent prompting to remember the words.

9:30 PM: “I heard he’s talking now?” One of the Respiratory Therapists from the ICU poked his head into Drew’s room. He worked with Drew a lot while he was in the ICU, but he had been on vacation for the past week and had not seen Drew since the ICU.

“Drew,” I said, “can you say ‘hello’?”

Drew smiled and waved his hand toward the door, and then he said, “Hello….”

“Are you kidding me?” The Respiratory therapist about fell over. “He could barely move his arms, and there was no way he could talk a week ago, and now look at him!”

For the next several minutes, Drew met someone who took care of him while he slept, and the therapist left flabbergasted. Earlier in the afternoon, one of the ICU doctors who saw Drew on his second day in the ICU stopped by, and she left in tears as he talked to her. As we shared all of the progress Drew had made, the doctor hugged Dawn and they cried for a few minutes together.

Neuro Floor, Day #7 (Thursday, August 24th) — 56 days since onset

11:00 AM: Drew stood up for the first time! In fact, he practiced standing 6 times as he got into and out of a wheel chair twice. Toward the end of his physical and occupational therapy treatment this morning, the therapists put together a reclining wheelchair for him to use. He stood again with both therapists and pivoted to the wheelchair to return to his room, and then back to his bed, but it took max assist from both of the therapists. During his therapy sessions, he also practiced sitting up on the edge of the bed several times.

5:00 PM: This afternoon Drew practiced writing letters and words on a dry-erase board with his sister’s assistance. He still has trouble reading small letters and his handwriting is difficult to read because he still has some ataxia and weakness in his hand, but he was getting better at reading words after his sister would write them out. Unfortunately, he worked so hard on his reading and writing, his afternoon Speech and Music Therapy treatments were kind of a disaster because he was so tired and mentally drained. As he gets tired, his response time slows and his words become more slurred and delayed. He did have about 5 seizures today, but overall had a good day and he continues to work on his memory and talking.

We felt bad missing another family function today — our neice got married in Utah County today, but it just rips our heart out to go to a family function with Drew in the hospital. Our family is not complete, so it is difficult to celebrate or leave him behind. We hope they understand and know that we will congratulate them in person, and with our whole family, in a few weeks.

8:30 PM: “Dad, where’s my phone?” Drew asked.

“It’s on the table next to your bed,” I said.

“Dad, can you give me my phone?”

I handed him the phone, and he studied it for a couple of minutes, trying to swipe the screen and struggling to read any of the numbers or letters. Finally, he held the phone back out to me and asked, “Dad, can you dial M❤️❤️❤️❤️’s number for me?”

I searched his contacts and dialed the number, and then I helped him lift his arm so he could hold the phone to his ear. Even though he has been moving his hands and elbows, his shoulders are still very weak, especially his left arm.

I smiled as he talked to his girlfriend about the first couple of days of school and choir, because school started two days ago. She patiently described to him what he was missing, and that he was missed.

Also, a couple more nurses and staff from the ICU stopped by after shift change this evening to see for themselves how well Drew was doing. They could hardly believe it was the same boy.

Working hard in therapy and getting encouragement from a four-legged therapist.

Neuro Floor, Day #8 (Friday, August 25th) — 57 days since onset

7:00 AM: Unfortunately, Drew pulled out his feeding tube this morning. The nurses spent 45 minutes getting a new one inserted. Once they finished, Drew was talking up a storm.

“Did I start school yesterday? What time is it?” Drew asked me.

“There’s a clock on the wall,” I pointed. “Can you tell me what time it is?”

“I can’t see the numbers,” he said.

“Well, it is a few minutes past 7:00 in the morning.”

“I’ve got seminary at 6:00,” Drew said with an alarmed look on his face. “Then I’ve got Drama, and Choir, and BC Calculus,…”

For the next little while, Drew was remembering his class schedule and talking all about A-days and B-days and how much he wished he could be at school. One of the big concerns that he kept mentioning was the auditions for the school musical coming up next week on Monday and Tuesday. He is convinced he will be there, and he plans to call his friends to sign him up for a slot.

5:30 PM: One of the nice features of being able to get up to a wheelchair is that it has wheels. After he finished his afternoon Speech and Music Therapy session, the nurse agreed to accompany us on a walk to go to the outdoor garden on the third floor. Because of Drew’s tracheostomy, the nurse must accompany us with a bag full of emergency items in case Drew’s tracheostomy falls out or becomes clogged. We sat for nearly 30 minutes in the shade of the patio garden, looking at the various statues and potted plants. The whole time Drew was nervously looking at his phone as he had asked me to send some text messages to some of his friends. He was having a hard time patiently waiting for their response and wanted me to send the messages again.

On our way back into the hospital, I noticed Drew was struggling to breathe. “Drew, are you OK?”

His face was bright red and he was making a strange sound from his throat as he gasped and struggled to take in a breathe. The nurse had a look of alarm cross her face and called Respiratory Therapy on her walkie talkie badge as we raced down the hallway back to his room.

Once in his room, the nurse grabbed the suction from the wall and started to try and help remove whatever was blocking his airway, but was having little success. I helped the nurse by hooking up the pulse oximeter to his finger while she worked on his tracheostomy.

“Fortunately,” I noted, “his Oxygen is good at 93%.”

Still, he was gasping and trying to cough something out of his airway. Respiratory Therapy made it to the room and they are able to suction a little deeper, but he also had little success.

“What I think may have happened,” the Respiratory Therapist said, “is that he has been on the speaking valve a little too long today and the lack of humidity with the valve and the outside air has dried out his secretions to the point that he cannot clear them.”

The Respiratory Therapist pulled off the speaking valve and flakes of dried secretions came falling out, but Drew still worked to clear something out of his airway. The Respiratory Therapist placed Drew back on the tracheostomy breathing mask, which gives him humidified oxygen to breathe. “Let’s have him breathe with his mask for a while and moisten back up his airway.”

I then helped the nurse to stand Drew and pivot him back to the bed as he looked extremely pale. We laid him down and positioned him, and fortunately all of his vitals looked good. It took about 30 minutes on the humidified oxygen for his secretions to moisten enough for Drew to finally cough them out.

8:00 PM: Drew’s seizures continue to be well-controlled, with only 4 to 8 seizures per day this past week, although one day he only had 2 seizures. They have all been partial seizures affecting primarily his eyes, mouth, and twitching of his hands or shoulders. One of the new doctors told me that the way one of the Neurologists described Drew’s brain waves on the EEG had been that he was having “seizures on top of his seizures,” and now the anti-seizure cocktail seems to finally have brought them under control.

9:00 PM: “I don’t know if you remember me,” the new Respiratory Therapist said as he entered Drew’s room and started writing his name on our dry erase board. “I took care of Drew a couple of weeks ago in the ICU, and I will be taking care of him again tonight.”

Drew smiled and waved at the therapist. “Hi, I’m Drew.”

“Wow,” the therapist smiled. “So what they are saying really is true. The ICU staff started calling him the “miracle boy,” and I wouldn’t have believed him to be the same boy I cared for in the ICU unless I saw it with my own eyes.”

I never could understand why the Case Managers were researching long-term care facilities to place Drew into after the hospital. In my mind there was no doubt he would be going to rehab and walking out of the hospital, so it was frustrating early on in the process when they would ask us to choose a facility for him. Whether it was our conversations with other FIRES families, or simply our belief in Drew’s motivation and strength, we knew he would “wake up” once the seizures subsided, and although he still has a lot of hard work ahead of him, he has come back to us.

 

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It All Started With A Fever, Part 17

The Acute Phase: A Slow Awakening

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.

There is an interesting verse in the Book of Mormon towards the end of the ‘war chapters’ that I reflect upon as Drew’s illness continues to stretch onward seemingly without end. The verse is found in Alma 62:41 and reads:

“But behold, because of the exceedingly great length of the war between the Nephites and the Lamanites many had become hardened, because of the exceedingly great length of the war; and many were softened because of their afflictions, insomuch that they did humble themselves before God, even in the depth of humility.”

First of all, you know this must have been a really long war because twice in one sentence, he described its length as “exceedingly great.” Second, we can learn that trials will fall upon all of us at some point in our lives, and we have a choice how we respond to those trials. Unfortunately, sometimes people can become frustrated and bitter as the tribulations seem to stretch on, and they choose to become “hardened.” On the other hand, our trial with Drew’s illness has had the opposite effect on our family. Despite the emotional roller coaster, we have seen the hand of the Lord bless our family and Drew so very many times.

ICU Day #48 (Wednesday, August 16th)

9:30 AM: Drew had a mostly quiet night last night, but every time they rolled him or changed his position in bed, his oxygen would drop into the 70’s and 80’s, and they had to suction him and watch him close until it came back up above 90%. The ENT surgeons just finished  changing out his tracheostomy to a new one and they said everything looks good. The ICU doctors were talking in rounds that now his tracheostomy has been switched out, they plan to transfer Drew out of the ICU tomorrow if everything continues to be stable. He seems to be having slightly fewer seizures, but still not all the way alert. Some of the medication changes seem to be helping slow down the seizures, so hopefully we’ll continue to see some improvement as they continue to adjust things.

8:30 PM: Drew has been really sleepy today. He was more awake late morning per Dawn and Erin, and he seems to have been a little more responsive. However, most importantly, he does not seem to be having as many seizures — it is hard to quantify, but I would guess he is averaging closer to 8 to 10 per hour now instead of 10 to 12.

Gotta love those cheeks.

ICU Day #49 (Thursday, August 17th)

10:00 AM: ICU just finished rounding and they still plan to transfer out of ICU this evening after the 4:00 Care Conference. He is getting Music Therapy right now and is smiling. He has periods where he seems to be tracking with his eyes, but still times with lots of focal seizures. We had another cluster of seizures again from 4:00 to 5:15 this morning, not the GTC, but lots of focal seizures that seemed to be continuous. The doctors decided to give him some Ativan to help break the cycle, and the seizures stopped within about 10 minutes. He seems to be doing good right now but limited motor control still.

5:00 PM: We just finished Drew’s care conference and everything went well. However, Drew won’t be transferred out of the ICU until tomorrow morning. There is a patient still in the room that they want to move Drew to and that patient is supposed to go home later tonight. The bigger news is that Drew was the most awake and alert this afternoon than he has been since we came to the hospital, and he has been trying to “talk” to us by mouthing some words, although he is still sleepy and incredibly weak. So just a heads up that Drew won’t be out of the ICU until tomorrow, and I can send a text out when we finally move to his new room.

9:30 PM: Word is getting around the ICU that Drew is scheduled to leave tomorrow.

“So I heard you might be leaving tomorrow?” One of the nurses who had Drew a couple of nights this week came into his room. Drew saw her approaching his bed and watched as she walked over and stood next to the head of his bed.

“Yes, we’re moving on up tomorrow,” I said. “Although I heard our view won’t be as good.”

“Depends on the room…,” his nurse said. The whole time she stood there, Drew was studying her face and seemed to be looking at her like she looked familiar.

I leaned in closer to Drew and whispered in his ear, “That is your nurse from Wednesday night. She took really good care of you. Can you tell here thank you?”

As he peered intently at her face, Drew mouthed the words, “th-thank y-you.”

As tears welled up in her eyes, the nurse said, “Well that just made my day.”

11:30 PM: Drew just picked his right hand up and moved it all the way to his chin. I jumped out of my chair in alarm that he was going to grab one of his tubes and pull it out. He was frustrated as he tried to reach his fingers for something on his face, so I boosted his elbow a little bit and then I realized he was trying to itch the tape on his cheek that is holding his feeding tube in place. Then I realized he probably doesn’t even know it was here or what it is, so I pulled up a chair next to his bed and I sat down and explained all the tubes and stickers on his face and chest in hopes that he wouldn’t try to pull them off.

Elder Dallin H. Oaks explained that we choose how we will be affected by adversity:
“Surely these great adversities are not without some eternal purpose or effect. They can turn our hearts to God. … Even as adversities inflict mortal hardships, they can also be the means of leading men and women to eternal blessings.
“Such large-scale adversities as natural disasters and wars seem to be inherent in the mortal experience. We cannot entirely prevent them, but we can determine how we will react to them.”

As we count our many blessings and focus on how far Drew has come since those first, few dark days of his illness, we realize how much we need the Lord and our dependence on him for all that we have. We are so grateful that Drew is finally starting to get better and the seizures are subsiding.

Neuro Floor Day #1 (Friday, August 18th)

1:00 PM: He’s been really sleepy all morning because he was awake most of the night. I told him several times to try and close his eyes and go to sleep, but he didn’t fall asleep until about 4:30 this morning. He hasn’t missed much as his mother and I have been packing up his stuff and waiting for his move out of the ICU.

3:10 PM: Goodbye, ICU. Hello, Neuro Floor! Drew officially made it out of the ICU for the first time in 7 weeks!

Goodbye, ICU!

Neuro Floor Day #2 (Saturday, August 19th)

8:00 AM: Drew finally fell back asleep. He woke up about 5:00 this morning and was trying to tell us something, but we couldn’t understand what he was saying other than the number three and holding up three fingers. I am sure it is frustrating for him as he struggles to talk to us.

12:45 PM: Bath time! One of the perks of being on the Neuro Floor is the hydrotherapy room, which includes a bathtub that has the ability to bathe patients such as Drew. We helped the nurses slide him onto a stretcher, and then we rolled him down to the hydro room and placed him over the tub. The bathtub actually raises up off of the floor and the water rises up and over the gurney. Unfortunately, Drew slept through almost the entire bath until right when we got him back to bed.

I have to chuckle because Drew reminds me a little bit of Westley from the Princess Bride when he wakes up from being “mostly dead.” Drew is so weak, he needs help moving his head, arms, and legs, but he is slowly getting stronger again. After being in a coma for most of the past 7 weeks, he is also quite sleepy much of the day and night, and the doctors tell us it will take time for him to recover.

6:30 PM: Hair cut time! His aunt was very kind and came up to the hospital this afternoon to try and cut Drew’s hair for the first time in over 2 months. We had to move him into the cardiac chair again and raise him up so that she could better cut his hair, but even then, I had to help him hold his head forward so she could use the clippers on the back and sides. We may have tried to squeeze a little bit too much into one day as he started to have a seizure mid-hair cut. His wonderful aunt hurried as quick as she could and finished just in time so that we could get him back to bed before he had more seizures. He was really tired and so were the rest of us, but he looks pretty handsome now!

Here is the clip from the Princess Bride. I feel a lot like Fezzik every time we see Drew start to move again.

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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.

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