It All Started With a Fever, Part 7

The Acute Phase: The Calm Beneath the Storm

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 disease.

ICU Day #13 (Wednesday, July 12th)

5:30 AM: The family is anxious to see if Drew can wake up when they bring him out of the coma today. He hasn’t opened his eyes or become conscious enough to communicate since last Thursday. As he lays in the coma, we sit and watch all the monitors that make sure he is breathing and his heart is beating. The doctors are pleased with the burst suppression (lack of seizure activity) as noted on his EEG brain waves for the last 48 hours. They plan to proceed with bringing him out of the deep-sedation coma later in the morning.

Drew did have a drop in his oxygen saturation early this morning. The nurses and respiratory therapists tried to adjust his ventilator and breathing tube, but they were struggling to get his oxygen levels back up, so the doctors ordered a stat chest X-ray that showed some increasing levels of infiltrates and secretions in his lungs, but nothing to worry about yet according to the doctors. Most patients in a coma cannot cough or move the secretions, which is why they build up, and Drew did not run any fevers last night. They plan to take cultures to check for any bacteria, and then they ask the nurses to try and reposition him more often.

9:00 AM: The doctors order the deep sedation to be reduced by 50% and start bringing him out of the deep sedation.

Noon: The doctors now completely stop the Pentobarbital and tell us it will actually take several hours for the sedation to wear off enough for Drew to open his eyes and wake up, but they plan to continue watching his brain waves on the EEG, which will show any seizure activity long before he is visibly “awake.” We all anxiously watch and wait to see what Drew’s brain will decide to do.

2:00 PM: As the Pentobarbital metabolizes out of Drew’s system, we slowly see an increase in the brain wave activity on his EEG. The first two hours off of the deep sedation are so good, the nurses have me stretch his legs in the bed and we reposition him a couple of times to work on clearing his lungs. Unfortunately, just now we see a seizure on his EEG and our hearts break a little.

3:45 PM: The doctors come meet with us and tell us that they need to put Drew back into a medically-induced coma again. Although his brain waves looked good the first two hours, his seizures returned starting at 2:00 and since that time, he has had “a lot” of them. I glance at the EEG monitor as they talk, and there is a lot of background activity as well as at least 7 spikes of superimposed seizure activity just since 2:00. The doctors plan to return him to the coma under deep sedation for another 48 to 72 hours to try and suppress the seizure activity and break the pattern.

5:00 PM: We were so anxious to see Drew “wake up,” but it just wasn’t meant to be. Dawn wants to go out to the car to talk because she feels that is the only place we can be alone. Once we get out to the parking garage and close the car doors, Dawn starts screaming and hitting the steering wheel with her hands. I tell her to let it out because she tends to hold everything in and worry. I hold her in my arms as she sobs, and her shoulders shake violently as she releases all the pent up dissappointment, worry, and fear from not only the last several days, but also the fear of what lies ahead.

ICU Day #14 (Thursday, July 13th)

8:00 AM: Continued seizures overnight, although mostly of the sub-clinical, focal variety. The Neurology doctors were not happy with the lack of suppression since yesterday and adjust the Pentobarbital dose with the goal of no seizure activity (per Drew’s EEG) for a solid 48 hours, which means the soonest they will try to bring him out of the medically-induced coma again will be Saturday morning.

9:30 PM: A follow-up MRI of Drew’s brain was performed this afternoon to compare to the one he had last week. The good news is that the results showed no real changes from last week, and that everything still appears relatively normal. In fact, that is the frustrating thing at this point: everything appears normal and healthy other than his persistent seizures.

The gloom from yesterday’s return to the medically-induced coma still hangs heavy.  Tomorrow will be two weeks since Drew’s brain got sick, and in many ways we still are no closer to him getting better. An even bigger unknown is what to expect the next few days and weeks. Last Sunday morning, the Stake President and one of his counselors and a couple of members from our ward came up and gave each of our family Priesthood blessings. It was a sweet moment and the Spirit was strong with the promise of hope and peace. Well, five days later, Dawn was feeling especially low again and she asked her brothers to come to the hospital and help me give her a blessing tonight. When they arrive, we find a secluded part of the lobby and give her a blessing. The Spirit was especially strong as her brother concluded the blessing, and afterwards, we all hug and cry and visit for a while to encourage each other. It might seem like a trite saying at times, but truly, families are forever.

ICU Day #15 (Friday, July 14th)

1:00 AM: A little over one hour ago, Drew’s oxygen saturations dropped quickly. The nurses worked frantically to bring them back up, but they were only having minimal success. Respiratory therapy was called, and as they suctioned and secured his breathing tube, the nurses and I helped to reposition him to improve his oxygen. The doctors were also notified and once his oxygen had stabilized, they ordered a stat chest X-ray that, although still no pneumonia, there were worsening infiltrates and phlegm in both lungs. The doctors ordered some aggressive respiratory treatments and repositioning to try and clear his lungs.

4:00 AM: The Respiratory Therapist returned with a chest percussion machine and starts targeting different areas of Drew’s chest, followed by suctioning of lots of secretions. Following the treatment, his oxygen improves slightly.

8:00 AM: Another respiratory treatment with another bump in oxygen saturation and more secretions suctioned out. Additionally, his seizures remained at bay under the deep sedation, with no activity. The nurses have also requested an air mattress to help prevent Drew from getting any bed sores. He has essentially been in a coma since last Thursday, and appears will continue to be in bed for several more days, so the air mattress is ordered.

4:00: The doctors ordered an echocardiogram of Drew’s heart this afternoon. The Pentobarbital can start to be really damaging on a patient’s heart and kidneys, and some of his labs have shown some changes, so they wanted to double check and make sure his heart is still holding up OK with the deep sedation. Luckily, Drew’s heart looks strong, but the doctors told us they don’t want to keep him on the Pentobarbital much longer.

10:00 PM: It was kind of status quo for Drew today at the hospital. He remained deeply sedated for suppression of his seizures while buying time for the seizure medicines to build up in his system. As such, we decided to drive up to East Canyon for a few hours to join our ward Youth Conference.

We had originally planned to help out with the Youth Conference being held this week, and both Drew and his younger sister would have been in attendance instead of just his sister. With Drew stable and not changing, I thought we should drive up and particpate with the testimony meeting planned for this night. Dawn accompanied me, which was a beautiful drive through the canyons east of Salt Lake City. As we waited for the meeting to begin, I became a little emotional watching some of Drew’s friends and imagining what Drew should have been doing this week instead of lying in a hospital bed in a coma. The testimony meeting was a spiritual uplift and many of the youth expressed concern and prayers for Drew. We had to leave before the end of the meeting in order to get back to Drew, but it was a nice couple of hours to escape the hospital.

ICU Day #16 (Saturday, July 15th)

8:30 AM: At one point, I counted last night, and Drew has 35 tubes or wires attached to him: there are 19 wires on his head for his EEG; his breathing tube in his mouth; his feeding tube in his nose; 1 arterial line in his right wrist; 1 PICC line in his right elbow; 1 reulgar IV in his right forearm; 3 regular IVs in his left elbow and wrist; 1 Foley catheter; 2 pulse oximeters measuring his breathing (one for the EEG and one for his telemetry); he has 3 telemetry wires attached to his chest; and 2 lines for his SCDs on his legs to help prevent blood clots. It takes a lot of hands to help turn or reposition Drew not only because Drew is a big kid, but just to manage all of the lines to not pull anything out.

The doctors do plan to start bringing Drew out of the deep sedation today, but this time they plan to wean off the Pentobarbital much more slowly. So they plan to start gradually tapering it off starting about 9:00 AM and say it will not be completely off until 24 hours later. Additionally, his cultures grew an organism last night and he now has pneumonia which they will start treating with an antibiotic. We are anxious to see if Drew can fully wake up this time, but we now realize it likely won’t be until Sunday as they bring him out of the sedation more slowly this time around.

© Copyright 2017 Jeff, All rights Reserved. Written For: Jeffrey Olsen