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.
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!
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.