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.
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.
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.
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.”