Tuesday, April 17, 2012
Sunday, April 15, 2012
Elle's Viewing
My neighbor Deborah's display of some of Elle's favorite things: her Justin Bieber barbie and Barbie girlfriend, her favorite music player with a microphone and best CD, one of her seven(!) tutu's, the pink rabbit Cam won for her on a family vacation, her fairy wings, and her pink high heels
 |
| Uncle Scott, Aunt Megan, Bentley Hughes, Ireland Hacking |
Wednesday, April 11, 2012
Good-bye
The doctors tell us late Wednesday morning that Elle is dying.
The kids spend the day at the hospital with us.
Rob feels strongly that we should arrange for an organ donation, so we review the information and decide to have her kidney donated. We both want to release her from her traumatized body as soon as possible. The process of authorizing donation after brain death takes two days. We decide to donate after cardiac death instead. The donation team can assemble by 6:00 p.m. but will require us to hand Elle over to the surgeons just minutes after death.
Rob feels strongly that we should arrange for an organ donation, so we review the information and decide to have her kidney donated. We both want to release her from her traumatized body as soon as possible. The process of authorizing donation after brain death takes two days. We decide to donate after cardiac death instead. The donation team can assemble by 6:00 p.m. but will require us to hand Elle over to the surgeons just minutes after death.
We bring the kids to Elle's bedside. They each lay beside her and talk to her and touch her. Then they each take another long turn.
Cam is afraid to lay next to her but tells her he loves her and kisses her good-bye.
The kids leave with the Child Life social workers.
The nurses lift Elle's swollen body and place her on my lap, still hooked up to life support. She feels very heavy as I try to hold her as close to me as possible. I kiss her forehead again and again as my tears fall all over her face, and I whisper how much I love her and how happy she will be in just a few minutes. Rob is sitting next to me stroking Elle's legs in his lap. We hold her for a long time and then tell the doctors we're ready.
It is 6:21 p.m. They clamp off her life support, and I watch the color quickly drain from her face. She makes no sound or movement. Her skin is grayish blue, and the doctors tell me it's time to let her go. Time of death is 6:35 p.m.
Cam is afraid to lay next to her but tells her he loves her and kisses her good-bye.
The nurses lift Elle's swollen body and place her on my lap, still hooked up to life support. She feels very heavy as I try to hold her as close to me as possible. I kiss her forehead again and again as my tears fall all over her face, and I whisper how much I love her and how happy she will be in just a few minutes. Rob is sitting next to me stroking Elle's legs in his lap. We hold her for a long time and then tell the doctors we're ready.
Then Rob and I stumble out of the PICU to face a life without Elle.
Sunday, April 8, 2012
Two Questions for an Apostle
I wake everyone up, and we get dressed and reach the hospital just as Elder Bednar and Dr. Larry Staker (the physician charged with the care of the Quorum of the Twelve Apostles) are walking down the hallway on their way out.
The account of their meeting with Rob is taken from Dr. Staker's notes: "We had arrived about 9:45 a.m. and had found a broken-hearted father, eyes red from crying and despair on his face. He took us to a private conference room, thanked us for coming, said he wished his wife could have been here and then wept again. He told Elder Bednar that he was a family favorite and expressed how much it meant to him that he would come.
"Elder Bednar said that he had come for one reason, but that Brother Evans would have to stand up to receive it. He then took him in his arms and held him tightly for a few minutes while they wept. Finally, Rob said, 'Tell me that it is all true. I feel like the father who said, "I believe. Help thou mine unbelief."' Elder Bednar replied, 'It's all true. And it's normal to feel that way. This isn't a Sunday School lesson anymore. This is the real deal.' He then explained that sometimes just being together was more important than anything that could be said.
"After some quiet, Elder Bednar offered an experience he had with a young man who had been married only four months and was diagnosed with cancer. He had told Elder Bednar that he didn’t want to leave his new wife or mortality, but that if it was the will of God that he should move on, he could and would accept that. A blessing was given and the next day there was no evidence of his cancer.
"Eight years later another cancer returned. Elder Bednar was prompted to ask this young man and his wife if they had enough faith in Christ not to be healed. Elder Bednar said he was able to bless this young man using all of the Apostolic keys that he holds and to transfer to him the power to be healed and/or to obey, understand, and comply with the will of God. Elder Bednar said to me [Dr. Staker] on the drive from the hospital, 'Larry, you see we must believe in our hearts and acknowledge to God that we know that he can heal us, and yet we must have faith that if not, we still believe.'
The account of their meeting with Rob is taken from Dr. Staker's notes: "We had arrived about 9:45 a.m. and had found a broken-hearted father, eyes red from crying and despair on his face. He took us to a private conference room, thanked us for coming, said he wished his wife could have been here and then wept again. He told Elder Bednar that he was a family favorite and expressed how much it meant to him that he would come.
"Elder Bednar said that he had come for one reason, but that Brother Evans would have to stand up to receive it. He then took him in his arms and held him tightly for a few minutes while they wept. Finally, Rob said, 'Tell me that it is all true. I feel like the father who said, "I believe. Help thou mine unbelief."' Elder Bednar replied, 'It's all true. And it's normal to feel that way. This isn't a Sunday School lesson anymore. This is the real deal.' He then explained that sometimes just being together was more important than anything that could be said.
"After some quiet, Elder Bednar offered an experience he had with a young man who had been married only four months and was diagnosed with cancer. He had told Elder Bednar that he didn’t want to leave his new wife or mortality, but that if it was the will of God that he should move on, he could and would accept that. A blessing was given and the next day there was no evidence of his cancer.
"Eight years later another cancer returned. Elder Bednar was prompted to ask this young man and his wife if they had enough faith in Christ not to be healed. Elder Bednar said he was able to bless this young man using all of the Apostolic keys that he holds and to transfer to him the power to be healed and/or to obey, understand, and comply with the will of God. Elder Bednar said to me [Dr. Staker] on the drive from the hospital, 'Larry, you see we must believe in our hearts and acknowledge to God that we know that he can heal us, and yet we must have faith that if not, we still believe.'
"Elder Bednar then gave Rob a blessing of comfort and priesthood empowerment. The three of us walked back to the PICU to see Elle. Elder Bednar touched Elle and spoke softly to her and then asked Rob if he had administered to her. When he answered that he had, no further blessing was needed—a silent affirmation of the priesthood and authority of a father—Elle’s own righteous, priesthood bearing father."
As Elder Bednar and Dr. Staker prepare to leave, I and all five of the kids meet them in the hallway just outside of the PICU. I begin apologizing for misunderstanding what time he would be able to meet with us, knowing how busy he was,... and he says with a smile, "Would you stop?!"
Elder Bednar asks Rob for permission and then hugs me for a few minutes. He tells me, "That hug wasn't from me." I tell him that I understand the opportunity of speaking to an Apostle and have two questions for him.
First, I explain that I don't want to believe that this accident was a random event. I don't want to believe that if it weren't for the precise timing of Elle's friend's family leaving, Elle's pace walking down the sidewalk, and the driver's family of four being ready to go and backing out at the very moment Elle would be undetected, she would still be with us and could live a long life with marriage and kids of her own. I ask him, "What are your thoughts?"
Elder Bednar quotes Joseph Fielding Smith at the funeral of Richard L. Evans, "'No righteous man dies before his time.' Elle hasn't reached the age of accountability, so we know that if she dies, she has qualified for the Celestial kingdom.... She will have graduated to the next life.... God's will cannot be circumvented."
I feel relieved by this reassurance. I don't know which events God causes or allows, but I know He can and does prevent situations that would interfere with His will or His plan for someone's life.
Elder Bednar asks Rob for permission and then hugs me for a few minutes. He tells me, "That hug wasn't from me." I tell him that I understand the opportunity of speaking to an Apostle and have two questions for him.
First, I explain that I don't want to believe that this accident was a random event. I don't want to believe that if it weren't for the precise timing of Elle's friend's family leaving, Elle's pace walking down the sidewalk, and the driver's family of four being ready to go and backing out at the very moment Elle would be undetected, she would still be with us and could live a long life with marriage and kids of her own. I ask him, "What are your thoughts?"
Elder Bednar quotes Joseph Fielding Smith at the funeral of Richard L. Evans, "'No righteous man dies before his time.' Elle hasn't reached the age of accountability, so we know that if she dies, she has qualified for the Celestial kingdom.... She will have graduated to the next life.... God's will cannot be circumvented."
I feel relieved by this reassurance. I don't know which events God causes or allows, but I know He can and does prevent situations that would interfere with His will or His plan for someone's life.
Rob had told Elder Bednar that Elle's doctors predicted her brain would be devastated in a few more hours. My second question for the Apostle is, "Do we take Elle off of life support if her brain is devastated but her body continues to function on life support?" He answers, "What do you think?" I feel a very clear and strong answer—"Yes. But, I don't want to do anything that Heavenly Father would not approve of." He says, "I don't think mothers can do anything wrong in these situations."
Dr. Staker leans over to me and says, "As a doctor, I'm telling you that you need to take her off of life support."
I am impressed that Elder Bednar doesn't tell me what to do, but instead defers to Rob's and my personal revelation and to Rob's priesthood authority as Elle's father.
Dr. Staker leans over to me and says, "As a doctor, I'm telling you that you need to take her off of life support."
I am impressed that Elder Bednar doesn't tell me what to do, but instead defers to Rob's and my personal revelation and to Rob's priesthood authority as Elle's father.
Elder Bednar takes each of the kids in his arms and hugs them.
Friday, April 6, 2012
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.
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.
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."
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.
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?"
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.
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....
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.
Wednesday, April 4, 2012
A Reprieve
Early Sunday morning, we call the kids and ask them to come to the hospital to say good-bye.
And then, to our amazement Elle begins to stabilize. Rob and our former home teacher, President Barker, give Elle a priesthood blessing. Rob is emotional and asks President Barker to be the voice, so Pres. Barker offers Elle a powerful blessing of healing. It is Fast Sunday, and the 35th and 39th wards are including Elle in their fasts.
Elle's blood pressure allows a decrease in life supporting medications, her functioning kidney begins to produce urine, and it appears that her lungs are also improving. Every organ that is damaged has the potential to heal on its own without surgery. Since we have evidence that her brain function is in tact, it is conceivable that she could make a complete recovery. We feel deep relief and are hopeful. Rob and I have our own team of doctor friends that sit with us and discuss her condition with Elle's doctors, each other, and us: Mike (head and neck surgeon), Jay (urologist), Jim (neuro surgeon), and Elle's Uncle Scott (cardiologist).
Family, friends, neighbors, the driver and his mother and sister, our bishop and Relief Society president, and my visiting teachers all visit and offer their support.
In the hallway by the parents' sleep rooms, I read a plaque with a photo of a 14-yr-old boy playing soccer who had passed away. I wonder, "Why should I get to bring my child home when so many others don't?" If she were to die, instead of asking, "Why me?" I wonder, "Why not me?"
Although Elle is stable, I feel a sense of dread as I pray, "Thy will be done."
D&C 42:48: "...he that hath faith in me to be healed, and is not appointed unto death, shall be healed."
And then, to our amazement Elle begins to stabilize. Rob and our former home teacher, President Barker, give Elle a priesthood blessing. Rob is emotional and asks President Barker to be the voice, so Pres. Barker offers Elle a powerful blessing of healing. It is Fast Sunday, and the 35th and 39th wards are including Elle in their fasts.
Elle's blood pressure allows a decrease in life supporting medications, her functioning kidney begins to produce urine, and it appears that her lungs are also improving. Every organ that is damaged has the potential to heal on its own without surgery. Since we have evidence that her brain function is in tact, it is conceivable that she could make a complete recovery. We feel deep relief and are hopeful. Rob and I have our own team of doctor friends that sit with us and discuss her condition with Elle's doctors, each other, and us: Mike (head and neck surgeon), Jay (urologist), Jim (neuro surgeon), and Elle's Uncle Scott (cardiologist).
Sunday, Monday, and Tuesday morning are a calm in the stormy, terrifying events of the past two days that allows Rob and I valuable time to face the shock of the situation and begin to process it. Child Life social workers help the kids make molds of Elle's hand and foot, posters to hang in her hospital room, and friendship bracelets—one for Elle and a matching one for themselves.
In the hallway by the parents' sleep rooms, I read a plaque with a photo of a 14-yr-old boy playing soccer who had passed away. I wonder, "Why should I get to bring my child home when so many others don't?" If she were to die, instead of asking, "Why me?" I wonder, "Why not me?"
Although Elle is stable, I feel a sense of dread as I pray, "Thy will be done."
D&C 42:48: "...he that hath faith in me to be healed, and is not appointed unto death, shall be healed."
Sunday, April 1, 2012
On Death's Door
Sunday Morning, February 5th
Not long afterward, her oxygen levels dive again. The swelling continues to increase and crowds her lungs and heart once again. They open up Elle's dressing to create more room and stitch the bag to her muscle walls instead of taping it to her skin. Her oxygen levels aren't recovering well, so the doctors tell us we need to put her on life support, called VV ECMO.
ECMO is a heart/lung machine, and it is the highest level of life support a child can receive. The machinery pulls all of the blood out of her body, oxygenates it, then puts it back in. The blood must be thinned with heparin in this process, which causes significant risk of bleeding out through her damaged organs, but in her state she will die without it. ECMO also comes with 10% risk of brain bleeds and stroke, with a stroke being more common for someone Elle's age. The doctors hook her up to ECMO respiratory bypass successfully, which solves her oxygen problem, but suddenly her blood pressure is plummeting.
And then she codes.
One of the nurses jumps on top of the bed, straddles her and begins CPR as others scramble for the crash cart and adrenalin injections for her heart. Rob stands holding me as I shake and sob hysterically into his chest. After three minutes, Elle's heart rebounds with the adrenalin shots, but she has persistently poor cardiorespiratory function, and the doctor tells us he can only do one more thing for her.
The ECMO machine can both pull and push blood in the body. Currently, it is only pulling blood (VV ECMO). He cannulates her for the push function, VA ECMO, but her blood pressure remains critically low.
I got to tell Elle I love her. I had the satisfaction of seeing that she knew I was there and that I knew what had happened. I got to reassure her that we were doing everything we could to help her. I got to see in her eyes that she was not registering any pain or any fear.
On that note, friends and grandparents leave for home.
With the trauma she suffered, the worst is yet to come as her body deals with the physical responses of her crush injury in shock. She requires large amounts of fluid to keep her blood pressure sufficient to sustain her life, but the fluid volumes cause swelling in her lungs and intestines. Within a few hours, her abdomen swells and gets rigid, which requires emergency surgery.
Her oxygen levels are dangerously low. At about 3:00 a.m., the trauma surgeon cuts her open from the top to the bottom of her belly to allow the swelling organs more space to swell without crowding the lungs and heart. He and the ICU doctor are also able to look around internally and assess the damage to her other organs. What they had anticipated would be a 1–2 hour surgery requires only 30 minutes. The news is good. Cutting her belly open revealed incredible swelling but solved the immediate oxygen and respiration deficit, and the damage to her liver and spleen is not as extensive as they had thought. Rob and I smile through tears and are so relieved. Her intestines and liver sit outside of her body in a clear plastic dressing.
Her oxygen levels are dangerously low. At about 3:00 a.m., the trauma surgeon cuts her open from the top to the bottom of her belly to allow the swelling organs more space to swell without crowding the lungs and heart. He and the ICU doctor are also able to look around internally and assess the damage to her other organs. What they had anticipated would be a 1–2 hour surgery requires only 30 minutes. The news is good. Cutting her belly open revealed incredible swelling but solved the immediate oxygen and respiration deficit, and the damage to her liver and spleen is not as extensive as they had thought. Rob and I smile through tears and are so relieved. Her intestines and liver sit outside of her body in a clear plastic dressing.
ECMO is a heart/lung machine, and it is the highest level of life support a child can receive. The machinery pulls all of the blood out of her body, oxygenates it, then puts it back in. The blood must be thinned with heparin in this process, which causes significant risk of bleeding out through her damaged organs, but in her state she will die without it. ECMO also comes with 10% risk of brain bleeds and stroke, with a stroke being more common for someone Elle's age. The doctors hook her up to ECMO respiratory bypass successfully, which solves her oxygen problem, but suddenly her blood pressure is plummeting.
And then she codes.
One of the nurses jumps on top of the bed, straddles her and begins CPR as others scramble for the crash cart and adrenalin injections for her heart. Rob stands holding me as I shake and sob hysterically into his chest. After three minutes, Elle's heart rebounds with the adrenalin shots, but she has persistently poor cardiorespiratory function, and the doctor tells us he can only do one more thing for her.
The ECMO machine can both pull and push blood in the body. Currently, it is only pulling blood (VV ECMO). He cannulates her for the push function, VA ECMO, but her blood pressure remains critically low.
At this point, the trauma surgeon and the ICU doctor with tears in his eyes sit down with us and tell us there is nothing more they can do. Elle's body is cycling in shock, and they don't think she is able to cycle out of it, which is fatal. It is about 5:30 a.m. We ask if we should call our kids to come to the hospital to say good-bye. "Yes."
Words can't describe the grief and horror of those hours. Her death was to be a reality.
An impossible reality.
An impossible reality.
Subscribe to:
Posts (Atom)