The Acute Phase: (Im)patiently Waiting
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.
Seems like all we have been doing and saying this past week is that we have to wait and see what happens. Drew has been in a medically-induced and/or seizure-induced coma since July 5th. We are so anxious to see him open his eyes and maybe even talk to us, but it has been so very difficult to wait.
President Deiter F. Uchtdorf gave a hallmark address during the April 2010 General Conference entitled, “Continue in Patience.” I appreciate some of his counsel and wisdom as it struck especially close to home this past week. Elder Uchtdorf explained, “Patience means active waiting and enduring. It means staying with something and doing all that we can—working, hoping, and exercising faith; bearing hardship with fortitude, even when the desires of our hearts are delayed. Patience is not simply enduring; it is enduring well!” It would be a gross understatement to say that the desires of our hearts have been delayed. I hope our family may have the necessary fortitude to continue through this trial as it will have been 5 weeks this Friday since we brought Drew to the hospital.
ICU Day #34 (Wednesday, August 2nd)
2:30 AM: Drew’s oxygen saturations have been up and down all night, with increased secretions in his lungs. The respiratory therapist is here in the room performing a percussion treatment on Drew’s lungs, which consists of a hand-held machine that “gently” beats on his rib cage to loosen the phlegm and consolidate the fluids for suctioning. The doctors have ordered these treatments every 4 hours to help keep Drew’s pneumonia from getting worse, and they seem to be helping, but in between the nurses have had to do more suctioning.
5:30 AM: The Radiology Technician just finished using the portable X-ray machine to take another chest X-ray and see how his pneumonia is doing today.
Drew — missionary cousin homecoming.December 2014.
10:00 AM: Neurology and ICU doctors both just finished rounds and they asked us to have a family meeting with the doctors this afternoon to have a plan in place as they start to bring Drew out of sedation. They plan to begin decreasing the Pentobarbital by 1 unit every 4 hours starting at 8:00 tonight. They want to bring him all the way out of sedation again, but gradually, so that they don’t trigger more seizure activity. They also ordered an ultrasound of his abdomen as the chest X-ray this morning showed a pocket of fluid just below his right lung and they want to look at it more closely.
5:45 PM: We just finished our Care Conference with all of Drew’s doctors, except for Rheumatology, but they had talked already with Neurology and were on board. Essentially, the doctors feel that we really cannot go back to the medically-induced coma again as we have pretty much maxed out its impact on Drew’s seizures, and we really need to focus on more of a long-term, management solution. They will finish the plasmapheresis treatments tomorrow and Saturday, and then we will watch how Drew does over the weekend as the Pentobarbital comes out of his system. The Neurology doctors cautioned that best-case scenario is that Drew will only have a few seizures per hour when he first comes out of the coma. We again assured them that we plan to see this through even though the doctors feel Drew will not come out of this “unscathed” and we really have no idea how much this syndrome will impact him, but we will just have to wait and see.
8:00 PM: The nurse just lowered the Pentobarbital rate from 6 to 5, and the slow process begins to bring Drew out of the medically-induced coma.
One of the biggest challenges for Drew’s siblings is being able to figure out why Heavenly Father would allow this to happen to Drew. As we sit and talk, I have tried to reassure them that one day we will know. Elder Uchtdorf said it better: “Often the deep valleys of our present will be understood only by looking back on them from the mountains of our future experience. Often we can’t see the Lord’s hand in our lives until long after trials have passed.” Again, it is difficult to answer the why questions when we are still in the middle of the trial, but someday we will understand.
ICU Day #35 (Thursday, August 3rd)
12:10 AM: The nurse lowered his Pentobarbital rate from 5 to 4, and the Respiratory Therapy has been in to Drew’s room a couple of times to perform some percussion treatment and suctioning. Drew’s pneumonia has not worsened, but has improved slightly. Still no fevers.
8:15 AM: The nurse just lowered Drew’s Pentobarbital rate from 3 to 2, so at this rate, the Pentobarbital should be shut off by about 4:00 this afternoon. However, because it takes a long time to metabolize the Pentobarbital, the doctors said it will likely take 48 to 72 hours to be completely out of his system and Drew probably won’t be able to “wake up” until Saturday or Sunday. We’re cautiously hopeful, but last time they brought him out of the medically-induced coma, Drew eventually went into status epilepticus, which means the seizures wouldn’t stop and couldn’t be controlled, so we’re very worried again about what will happen. His EEG is definitely more active now as they have already started bringing him out of the sedation, but no clinical seizure activity yet. His lungs are sounding a little bit better. No bowel sounds yet, but hopefully as the Pentobarbital continues to decrease his stomach will wake back up.
10:45 AM: Neurology doctors just stopped by. We looked at the EEG screen, and although he cautioned not to watch it too closely but look more at Drew, he said he was somewhat encouraged. There are still frequent “spikes” but also some normal-looking activity in between. Between coming out of sedation and the constipation, he thought the EEG was encouraging despite the several “spikes.” They will be really curious to see what it looks like after the plasmapheresis today. The plan to increase his Perampanel dose today (it is not full dose yet) and they also discussed with Dr. Folloux other contingency plans last night to adjust some of his other medications as needed. They actually thought of two other medications they could add, and they discussed trying the Ketogenic diet again. His tube feeds have been on hold the past 4 days until his bowels start moving again, but his gut has been completely shut down due to the effects of the Pentobarbital. However, the doctors are hopeful his stomach will wake up by tomorrow or Saturday as they bring him out of sedation.
7:00 PM: The nurse just shut off the Pentobarbital drip. They actually kept him on it a few hours more than they originally discussed due to the plasmapheresis taking off his seizure medications. The kidney doctors performed the plasmapheresis from 1:00 to 3:00 this afternoon, and during the second hour, he started having what appeared to be seizures with much more EEG activity. They believe the plasmapheresis pulled off much of his seizure medication along with his antibodies. So as soon as the plasmapheresis ended, they gave him a new dose of his three seizure medications, plus they added a dose of phenobarbital. It took a couple of hours for the new dose of seizure medications to take effect, and in the meantime, it looked like he had a few seizures, which was really hard to watch and sit and wait for medicines to kick in.
10:00 PM: The ICU doctors just said the Neurology doctor (Dr. Butterfield) called and said to give Drew another bolus of phenobarbital. They ran some lab tests to check his phenobarbital level right now after the first bolus it was only 36 and they want him to be between 40 and 50. So they gave him another bolus just now.
As Elder Uchtdorf concluded his remarks, he summarized:”The work of patience boils down to this: Keep the Commandments; Trust in God, our Heavenly Father; Serve Him with meekness and Christlike love; Exercise faith and hope in the Savior; And NEVER GIVE UP.” We would never give up on Drew, but it sure can be painfully hard to learn patience as we wait.
ICU Day #36 (Friday, August 4th)
8:30 AM: Finally, some success with Drew’s stomach waking up. Last time he came out of the Pentobarbital sedation, it took about 15 hours for him to have a bowel movement. This time the plasmapheresis may have sped it up a little bit because it only took 12 hours. Right after shift change this morning, the day nurse discovered during his assessment that Drew’s stomach is officially awake.
Other developments overnight include the slow, but continued improvement with Drew’s EEG as he continues coming out of the coma. However, this morning some of his brain waves were looking really weird on the EEG — the waves did not look like any of his previous seizures, but there were some definite changes. After talking with the Neurology resident, it appears the EEG is picking up muscle movement, not a seizure. As the sedation continues to wear off, Drew has begun swallowing a little bit. When I first saw him swallowing, I was kind of freaking out because I was afraid it was a seizure, but his swallowing is sporadic, not rhythmic or cyclical, and definitely seems more like swallowing. He also has had a little coughing and belly twitches, a teeny bit of a finger twitch as they were suctioning him this morning. Doctors say some of his reflexes have returned, but not able to follow commands just yet. They believe it will still be another 24 to 48 hours before the Pentobarbital may be out of his system enough for him to possibly “wake up.” Again, we’ll just have to wait and see.
11:30 AM: Dawn just arrived at the hospital, and she has been crying. She had registered Ashley for 11th grade at Copper Hills High School this morning, but she didn’t register Drew for his senior year yet. She is not even sure if, or when, he will be good enough to return to school. His ability to return to school this year will depend largely on his progress the next few days, so we will probably have to go into the school next week and talk to his counselor about options for Drew. Again, we just have to wait and wait and wait and see what happens.
One of the many reasons that the Harry Potter books were so popular and enedearing is that J.K. Rowling provided many outstanding, inspirational quotes throughout all seven books in the series. In the fourth book, Harry Potter and the Goblet of Fire, in the very last chapter of the book (didn’t see this in the movie), Hagrid is talking with Harry and his friends about the coming challenges now that the evil Lord Voldemort has returned. As they prepare to depart school and return home for summer vacation, Hagrid gives them this piece of advice:
“No good sittin’ worryin’ abou’ it,” he said. “What’s comin’ will come, an’ we’ll meet it when it does.”
Although Hagrid does not have the eloquence of Professor Dumbledore, he speaks with the wisdom of one who has undergone his own trials and hardships. Hagrid knows that the most terrible things in life can never be predicted, but at the same time, he also acknowledges that life will still go on, and we must continue forward and be ready for whatever may come our way. No matter how Drew emerges from this illness, we too must press forward and meet what’s comin’ when it gets here.
After eating a lot of food samples at Costco, sometimes you just need a nap.
Hang in there. Lots of love and prayers for all of you.
Our thoughts and prayers are with you, Drew, and your family.
Prayers for your family and for the Doctors and Nurses whom treat him. “And it came to pass” I hope that it will come to pass that he will return to you.