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.
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.”
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.
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.
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.
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.
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.
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.
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.
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.