It All Started With A Fever, Part 4

The Acute Phase: Seizure, Sleep, Repeat

The Social Worker at Primary Children’s Hospital told us today 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 #4 (Monday, July 3rd)

12:30 AM: The doctors ordered a stat CT scan following the first seizure. Unfortunately, Drew had become lethargic and confused and was refusing to lie on his back or hold still for the CT scan. Despite the efforts of four nurses and I trying to position Drew, he becomes increasingly combative and ultimately receives doses of Benadryl, Ativan, and Haldol without effect, so one of the ICU doctors has to come down to Radiology and sedate Drew with Propofol to get him to hold still. Fortunately, the CT scan results come back a short time later as normal, with no evidence of any bleeding, tumors, or structural changes that would explain the new seizure.

8:00 AM: Surprisingly, Drew is quite lucid this morning. He is able to complete a fairly lengthy neurology exam for both the ICU doctors, and then again with the Neurology doctors. He remembers the date, that he is in Primary Children’s Hospital, the year, and even that Trump is the President of the United States. He complains of having “pain all over,” and his speech is still slurred and slightly delayed. Later, his uncle would also surmise that he also gets pain all over when he remembers Trump is President. The doctors assure us that most children with encephalopathy will have seizures, so they are not surprised, but they plan to repeat his lumbar puncture this afternoon and obtain more samples to expand their search for the virus or other causative agent.

Noon: Drew has his second seizure (first of the day). This seizure is also a Grand Mal, but it only lasts about 60 seconds and does not require any Ativan to help it stop.

8:00 PM: The lumbar puncture went well and similar to before, the preliminary results show no infectious agent. There is a slight rise in his blood cell count in the spinal fluid, but the total count still falls within normal limits. They plan to send samples to California (to test for anti-NMDA) and the Mayo Clinic in Minnesota to test for more auto-immune markers in addition to expanded panels for viruses, heavy metals, toxicology screens, and other possible infectious agents that might have been missed from the first lumbar puncture. Drew is not as alert as yesterday, and we only have been helping him sit on the edge of the bed to urinate (instead of trying to stand again) because of the fear that he may have a seizure while standing and hurt himself.

Seizure Count: Only 1 seizure today, but he was sedated for much of the afternoon while he had another lumbar puncture and IV placement.

ICU Day #5 (Tuesday, July 4th)

4:00 PM:  Drew’s mother and I run home to do some laundry and pack a fresh set of clothes. We return to the hospital just in time to see Drew have another seizure (his second seizure of the day). This one only lasted about 60 seconds and was a “focal” seizure. Basically, the focal seizures have been limited to his eyes, mouth, and breathing.

8:30 PM: Unfortunately, Drew just had his third seizure of the day. Drew’s mother and I have discussed possibly walking to a window or outside the hospital to take advantage of the spectacular view from the hospital (situated up on the East bench of the Salt Lake Valley) and watch fireworks, but instead, we sit by Drew nervously hoping his seizures are finished for the day. Although his seizures are now more focal in nature and somewhat self-limiting, the problem with them is that he has stopped breathing each time. The nurses have to assist his breathing and sometimes I help by performing jaw thrusts to better open his airway while the nurses hold an oxygen mask over his mouth and nose. The nurse explains that if he was not in the ICU, they would have to call a “Code Blue” each time he stops breathing, and then all the ICU staff would come running to his room to assist. So the doctors plan to keep Drew in the ICU another night.

Seizure Count: Three seizures today; 5 seizures total to date.

ICU Day #6 (Wednesday, July 5th)

9:00 AM: Drew had three more seizures overnight. Despite the increasing seizures, at this point, he continues to be lucid part of the time. The doctors allow him to start some ice chips, but they also placed a feeding tube on Monday while he was sedated so that he can start getting some nutrition (he hasn’t really eaten solid food since last Wednesday).

At this point, Drew now has three groups of doctors working on him: ICU, Neurology, and Infectious Disease. For the next few days, the doctors seem to disagree on the next steps because all of the lab work and tests from the second lumbar puncture have come back negative. West Nile virus is negative. Both Herpes viruses are negative. Bacterial Meningitis is negative again. Toxicology screen, heavy metals, fungi, and all other infectious agents are negative. All other viruses negative except for 7 more pending and the Mayo Clinic still pending. The Anti-NMDA from California also came back negative.

The Neurology doctors now feel it is most likely autoimmune in nature, and the next step is to determine if the trigger was a tumor or a virus. They plan to do an ultrasound and another CT scan this afternoon with contrast to look for any tumors in Drew’s chest, abdomen, and pelvis. Drew overhears the word cancer, and he starts to get really worried despite our reassurances. The plan is to now add a fourth set of doctors who specialize in oncology (cancer).

The ICU doctors on the other hand are still not ready to focus on only an autoimmune disorder and feel more work-up is needed to rule out additional drugs or poisons. The ICU attending doctor steps into Drew’s room and bluntly confronts Drew’s mother and me.

“With all the tests and lab work coming back negative for any infectious agents, we feel like we need to consider the fact that your son may have used some drugs,” she said.

We stand there shocked and dumbfounded that they are bringing this up again. We have already told them multiple times he has never used drugs, all of his toxicology screens have come back negative, and the doctors in the ED even gave him some Narcan to make sure his altered mental status was not due to narcotic use (it wasn’t).

The doctor continues, “You look like you have a question for me?”

“No,” his mother says, “I’m just trying to process what you said.”

In reality, Drew’s mother was using every ounce of her being to not scream in the doctor’s face. Instead, as soon as the doctors leave, we go out to our car. We sit in the parking garage and Drew’s mother screams and cries and screams as she repeatedly slams her hands on the steering wheel.

“How can they keep accusing our son of this?” She yells. “How many more things do they have to rule out before they actually start treating him?”

2:00 PM: Drew is resting in bed with his eyes closed. Dawn’s mother and sisters have gone home for the day to catch up on the laundry and chores. We have decided that either his brother or myself should stay at the hospital to help Drew urinate or keep him calm. Drew is actually much bigger than most of the nurses and a few of them are hesitant to help him out of bed.

Out of the blue, Drew asks, “Can we have a prayer?”

“Sure,” I said. “Would you like to say it or would you like me to say it?”

Drew surprises me again when he says, “I’ll say it.”

Drew starts, “Heavenly Father…, Please bless me to feel better…. Please bless the seizures to stop…”

He pauses between each request, and a couple of times I wonder if he has fallen asleep. However, he continues by repeating the same two lines again. He pauses for a long time again, and I wonder if he forgot what next to say, so I prompt him,”In the name of Jesus Christ, Amen?”

Drew answers, “No, Dad, I’m not finished.” He then repeats the same two lines for a third time, but then he adds, “Please bless the doctors. In the name of Jesus Christ, Amen.”

8:00 PM: Drew returns from the CT scan, and this time, he didn’t even need to be sedated. He was struggling to stay still on his back, but it only lasted for a few minutes. The worst part was the contrast shooting through his IVs, which are really chewing up his veins in his hands and wrist.

Initially, they thought they would transfer him out of the ICU this evening, but he has had 4 more seizures today and the doctors feel like they better keep an eye on him one more night. They also talked about letting him start some broth, but he is so tired and sleepy after the CT scan, he cannot attempt any liquids at this point.

As the doctors come around for evening rounds, Drew asks, “So do I have cancer?”

“Ultrasound and CT scan results are negative for any tumors, so you don’t have cancer,” the ICU resident explains. “However, it looks like you may have an infection in your kidneys, so we need to review some of your tests and see if this is why you have been sick.”

Drew starts to cry as he says, “I don’t have cancer.” We’re all relieved, but still a little frustrated as it seems we are no closer to an answer as to what is causing Drew’s symptoms.

Once the doctors leave Drew’s room, his mother again tries very hard not to scream as she begins to cry. She turns to me and asks, “Are they saying all of this might just be due to a kidney infection?” She pounds her fists on my chest, “Why did they do all these tests to my son for just a kidney infection?”

Unfortunately, we find out the next day that Drew did not simply have a kidney infection, which would have been much easier to treat, but these CT scan results of his kidneys did confirm Neurology’s diagnosis.

Seizure Count: Seven seizures today; Twelve seizures total.

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