The Acute Phase: Pioneer Day
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.
So often in life, we tend to lose persepective, or our focus can be blurred, due to stress, emotion, and fear. I mentioned in an earlier blog post last week about a frustrating day with one of the nurses, however, I would be negligent if I failed to mention the many, many outstanding nurses who have cared for Drew these past few weeks. He has had so many that it has become difficult to track, and I hesitate to mention names because I cannot remember them all, but some of the hardest working and most compassionate nurses who have cared for Drew include (and not limited to) Brady, Mary Kate, Jamie, Mary, Steven, Laura, Joshua, Nichole, Ashley, Ruby, Melissa, Brooke, Mel, Sarah, Ally, Rachel, Erin, and George.
Obviously, Drew is a big kid with a lot of medicines and a lot of medical needs these past few weeks. I can see the exhaustion on the nurses’ faces when they finish their shifts. They work doggedly to clean, reposition, juggle, actively monitor, and manage all of Drew’s many symptoms and do their best to help Drew recover. Then you throw in some C-Diff and the need to don extra gloves and gowns to just enter his room, let alone work to prevent any infections or other complications, and we can visibly see the extra effort that the staff expend to care for Drew. We also are very grateful to the many attending doctors, fellows, residents, and other clinical staff. There are several doctors who will always hold a special place in our hearts as they sat with us at Drew’s bedside and helped us to understand and navigate this nightmare of a journey. Even though it might be easy to focus on the one, it would be a disservice to lose persepective of the 99 who went above and beyond. Our family will always be grateful for the outstanding care from the vast majority of the nurses, doctors, and other clinical staff at Primary Children’s Hospital who have done their best to help Drew to get better.
ICU Day #25 (Monday, July 24th)
8:30 AM: Last night just before midnight, Drew’s feeding tube became clogged, so they had to replace it with a new one. They were able to place the new feeding tube in his room, and I watched as they threaded it up through his nose, down the back of his throat, and then slowly down into his stomach. Once they could hear with their stethoscope and felt confident that the end of the tube made it to the right spot, a portable X-ray was taken and examined by the doctors to verify it was placed correctly. Drew is about the same otherwise. Still not conscious. Seizures about every 2 to 4 minutes. Doctors plan to continue adjusting medications and monitoring. If anything, the seizures seem to have changed slightly again according to his EEG, but not sure if there is any significance to that or not.
2:00 PM: So one of the medication changes this morning was to drastically jump his phenobarbital dose up because that seems to be the only medication currently having any effect on his seizures. The doctors ordered a bolus dose a little bit ago, as well as big increases to his doses he gets twice per day. It seems the doctors are really trying to break his cycle of seizures because nothing else has really been effective. When they first gave him the phenobarbital bolus, Drew’s blood pressure dropped really low, but it started slowly climbing before they had to give him any norepinephrine. Immediately thereafter, the seizures slowed to about every 15 minutes, lasting less than 45 seconds, although they continue to be focal with clinical manifestations each time, including hypersalivation, spasms in his mouth and jaw, and his eyes rolling upward.
10:00 PM: Sometimes so much attention is focused on the one child who is sick, the rest of the children may feel neglected. We have been trying not to let that happen, spending some time each day to check in and talk to each of them. We also have tried to involve them all in decisions, meetings, and some of the caregiving.
Today is Pioneer Day in Utah. As part of the celebration for this state holiday, we took the kids up to the top of the parking garage and we watched the hundreds of fireworks igniting across the valley. Coincidentally, a line of thunderstorms was also approaching from beyond the Oquirrh mountains, and periodic lightning bolts danced across the sky to punctuate some of the aerials from the ground. It was a nice break from the confines of the ICU, and it was equally nice to express our love to all of the children and their dedication and help these past few weeks.
ICU Day #26 (Tuesday, July 25th)
9:00 AM: Drew continues about the same this morning as he remains unconscious with clinical seizures that vary in frequency from every 3 to every 10 minutes. The seizures really started to increase this morning as some of his medications wore off, but since he got them again at 8:00, the seizures have been relatively quiet again. The ICU doctors came by and they plan to take out the catheter and the arterial line today to keep Drew from getting any additional infections.
Noon: The occupational therapist came by at 10:30 to help sit Drew up in a stretcher-chair. This effort required assistance from five people in order to keep any of his tubes or IVs from getting pulled out. They like to sit patients up in a chair to help prevent any pressure sores, as well as to allow gravity to assist with draining the lungs, moving the bowels, and challenging the blood pressure to start getting used to being upright again. Drew tolerated the chair well and after an hour, they returned him to bed.
The Neurology team stopped by while Drew was sitting up, and they want to add a new anti-seizure medication called Perampanel. They explained that this new medicine works differently than the other seizure meds, so the hope is that it can help get his seizures under control. Once the Sage 547 study drug finishes tomorrow, the Neurology doctors are thinking plasmapharesis is most likely the next step. They also told us that they started the application for getting an open label cannabis oil type medicine approved so that could be another treatment option later down the road if needed.
9:00 PM: I just returned to the hospital following a church leadership meeting as I tried to get caught up a little bit on some of the needs of the ward. While I was at home, I also grabbed the mail from the mailbox as it hadn’t been checked for a few days, and the first packet of physician bills had arrived. Good thing for insurance. All of the doctors have been working so hard to help Drew that I don’t mind. Otherwise, didn’t seem like much progress for Drew today. Seizures continued most of the day and he is certainly not any closer to “waking up,” nor has he been able to blink his eyes again since last weekend. As the Sage 547 study drug ends tomorrow, the ICU Case Manager has scheduled another Care Conference, or family meeting, with all of Drew’s doctors for 11:00 AM to discuss which treatments to do next. They are still hopeful some of these other options will help, but I think we all agree that placebo or not, the Sage 547 study drug did not work for Drew.