No Going Back

As I try to wrap my head around Elle's future, I ask the doctors for some kind of benchmark to measure her progress against. They tell me that if she remains stable until the end of the week, they can take her off of life support and will have a much better idea of what her long-term issues will be.

While the day starts well and the plan is to allow Elle to wake up again in order to assess her neurological and brain function, by late Tuesday afternoon, Rob and I get shattering news.

Elle's right pupil has blown out, indicating significant brain damage to the right hemisphere, and her blood pressure is decreasing. A CT scan reveals an intracranial hemorrhage and hemispheric stroke that will likely continue to swell into the left hemisphere, causing significant if not devastating brain damage.

Rob and I are led to a small conference room where we can be alone with the horrifying news. We sob and hold each other and pace and sob again. It scares me to see Rob so upset. I tell him, "I'll be strong for you, and you be strong for me."

[photo is not Elle's actual scan]

Our only hope lies in an emergency decompressive craniotomy, where neurosurgeons remove part of her skull on the right side to allow the swelling room outside of the cranium to preserve the left hemisphere. This surgery can only be performed if Elle can be taken off life support in the next couple of hours, because the blood thinners ECMO requires would cause her to quickly bleed to death during surgery.

We consult with neurosurgeons, who agree to do the surgery if she can be taken off of ECMO successfully in the next few hours. The PICU doctors begin testing Elle's heart and lung functionality, giving her several blood pressure medications and attempting to shift her slowly to a ventilator to see how she responds.

We are told that although the right hemisphere of her brain is devastated, since she is right-handed, she would retain her ability to speak and communicate and also retain many complex functions. At her young age, her brain would likely compensate well for the half that was not functioning. Best case scenario would be that her left side would be paralyzed, but with rehabilitation, she would eventually learn to walk again with a stiff dragging left leg and a bent left arm and wrist.

A few hours later, the PICU doctor tells us Elle will not survive if she is taken off of life support. Surgery is not an option. Doctors can do nothing more for her.

Elle shows signs consistent with progressive herniation, or swelling, in the brain overnight. I decide not to speculate about the future and to take it as it comes.

And so, we wait for Elle to declare herself. We wait to see if her brain stops swelling on its own so we can assess the damage and move forward with her new handicaps, or to see evidence, such as her left pupil blowing out, that the swelling has devastated her left hemisphere and brain stem function, rendering her brain dead.

We call McKenzie and ask her to bring the kids to the hospital, so we can tell them Elle's condition. My family and Rob's family come, along with our bishop, Jim, and Mike and Michele. We are shown to a large room with a tv, snacks, and tables and chairs.

We explain Elle's condition, and Getty asks in disbelief, "Wait—so there's no chance of Elle going back to normal?"

No.

MK watches Avatar; Ashley, Mia, and Getty do headstands and yoga positions; and everyone else sits numbly and talks. 

After breaking that kind of news to the kids, I feel like I need to go home and be with them that night. We leave around 11:30 p.m., and the kids finally crawl into bed and fall asleep around 12:30.

I stay up until 3:00 a.m. trying to reclaim the house, which neighbors had already tidied up. Cleaning up is all about control for me, and I am feeling out of control.

Being home and seeing Elle's door cracked open but with no night-light on stabs my heart. I go to bed.

It is 8:00 a.m. and my phone is ringing. Rob tells me to hurry to the hospital, because Elder Bednar is paying us a visit sometime before noon....