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.
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 PM: Drew 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.
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.
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.
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.