Chapter 14 “Mom, I think this is serious”
On Tuesday
September 29, 2009 Emm called me on my cell phone from the bathroom in our
home. I was at work and not in a
position to leave at the moment.
My dad was home watching her because she wasn’t feeling well. For days she had been having more pain
than usual, her stomach had become more distended and she was more tired than
usual.
She kept saying
she felt like her stomach was, “stretched out”.
We had no idea
that her heart was shutting down.
She took the phone
into the bathroom, shut the door and I heard her crying. My sweet Emmalee with a trembling voice
said, “Dad I hurt so bad I can’t stand it.”
“Go and get
grandpa,” I tried to convince her as calmly as possible.
“No, I
can’t!” Her voice was still
shaky.
“Why” I said, feeling
so powerless.
“I just can’t, I
hurt too bad.”
I instructed her
to hang up the phone and not to answer when I called back. I called back several times trying to
get a hold of my dad. He finally
picked up and went to check on her in the bathroom and found her on the
floor. I heard her screaming in
the background and became sick to my stomach. Here my little girl was in pain and I wasn’t there.
I called Kara at
work and she immediately headed home to pick her up. Kara called Emm while she was driving, talked with her,
which helped her calm down.
While on the
phone, in a calm tone Emm said these chilling words, “Mom I think this is
serious”.
Emm’s pain had
lessened and she lay on our bed.
Kara walked into the bedroom and Emm seemed to be doing a little better.
She debated whether or not to wait until the next day for our scheduled
appointment. She decided it would
be best to take her in to get her checked out at the oncology clinic.
While at the
clinic, Emm lay on her right side in one of the waiting rooms. When she sat up
Kara noticed that Emm’s eye was swollen.
This was the beginning of some severe Edema.
They decided to
admit her overnight to get her stabilized and feeling better. They didn’t even think it was
serious. She seemed okay other
than some abdominal pain, swelling, and her stomach being distended. They were not going to let her eat
because they wanted to do a CT scan.
She cried and cried about not being able to eat. Food was her favorite thing and she was
very cranky and upset when she could not have it.
They finally
decided to wait until morning to do the scan and at 8:30pm I arrived at the
hospital with some chili from Wendy’s.
This would be her last craving and last meal. She
took a few bites and shortly after threw up. This was not atypical so we were not alarmed.
They
started giving her blood, plasma and fluids because her levels were all so
low. Emm fell asleep ok, but
did not get up at all during the night to go to the bathroom. She woke up at about 5:30am complaining
that her neck was hurting. I
thought she had kinked it during the night because of the weird hospital
pillows. I fluffed it for her and
she went back to sleep. I had no
idea her body had started to shut down.
The docs came in
and were worried that she had not urinated. Her neck and face were swollen. Her face looked misshapen. Her heart rate was at 150 beats per minute, but they could
not find a blood pressure. All of
a sudden there was a flurry of activity in her room. They were unplugging monitors, rearranging her IV and
getting her prepped for the ICU.
One of the interns asked me if I requested life saving measure to be
taken on her. This question took
me by surprise, as I didn’t realize it was potentially this bad.
I responded, “By
all means do everything possible to save her life.” Not knowing that very soon my opinion would be in stark
contrast to that one.
She arrived in the
ICU in a matter of minutes. She
was not fully conscious. There was
a doctor barking orders to a team of seven or eight other nurses and other
staff. I was in shock. I became very worried when this same
physician told me she could go into cardiac arrest at any moment. She also asked me if I wanted
life saving measures to be taken.
I again answered,
“yes”.
The doctor started
telling me that a decision needed to be made about intubation. (Putting a
breathing tube down her that would breathe for her.) She informed me that they would most likely need to do this
very soon and this was a very delicate procedure that could cause her to go
into cardiac arrest.
I knew she was in
bad shape when they had to put an IV in and she hardly whimpered. Also, they put an arterial line in her
without a whimper.
This took several
tries in her hand that did not have the IV. After that failed they tried several times in her femoral
artery before they were successful.
I sat with her and held her hand through most of this, but she was
hardly aware of much.
They also put a
catheter in without protest. They
stabilized her blood pressure with some Dopamine and gave her adrenaline. They had her on a breathing apparatus,
which basically forced air into her lungs. It was one step short of intubation. They came in to do another X-ray of her
chest and later an echocardiogram.
These would give us some horrible information that would force us to
make one of worst decisions anyone could be asked to make.
The X-ray showed
that one of her lungs was almost full of fluid and her belly had a lot of fluid
in it as well. This is why her
belly was becoming distended. Her
eyes were swollen shut and her face looked distorted because of all the water
retention. Since the X-ray the
night before things were much worse.
The echocardiogram would show and even more ominous picture.
A theory was that
the chemo drugs she was or had taken damaged her heart. Her heart was functioning at ten
percent infarction. It was not
able to adequately pump blood to her body. She could arrest at any time. They also used the word Septic. They were pumping her full of antibiotics for an unknown
infection.
They did not want
to drain the fluid in the lung or belly for fear it would cause her to have an
immediate cardiac arrest. They
told me that if they drained the fluid more fluid would immediately rush in and
possibly kill her. There was
really no good news at this point and there were no good options.
WEDNESDAY, SEPTEMBER 30, 2009 12:21 PM,
MDT
Prognosis is very bad. She is in congestive heart failure.
Two heart valves are leaking into her lungs and her heart is functioning
very minimally right now. She is not very coherent. We are calling
family together to be with her.
They will need to intubate her today because of her heart failure, which means
they put a breathing tube down her to make her breathe. She will then basically
be sedated. Intubating her may put her into cardiac arrest. We need
to decide what direction we want to head. It does not look good right now
either way we go.
The doctors needed
to know ASAP if we wanted to intubate her and if we wanted to try to
resuscitate her if she went into cardiac arrest. I wanted family to be there so we could make that
decision together.
Family started
arriving at about 12:45pm. A
neighbor showed up around 11am stating she just felt like she needed to be
there. She brought some food but I
had no desire to eat or drink anything.
We gathered into a
room as family and various medical staff.
In this meeting we had the ICU head physician, our oncologist, a MD who
specialized in these types of decisions.
Kara, Matt, Krystal, my parents, Kara’s parents and myself. The medical staff did not lead us in
any direction, but laid out for us the pros and cons of life support versus no
life support.
The factors we
weighed were: 1. Her pain,
sickness, discomfort, throwing up, diarrhea, fatigue and inability to fully
enjoy life. Over the last
year her health was slowly deteriorating. 2. She could be a lot worse off if they did happen to pull her
through. 3. There was a good chance that as they
tried to intubate her she would have go into cardiac arrest and die. 4. If they tried to drain the fluid in her lungs and belly she
could go into cardiac arrest and die.
5. Her heart may have permanent damage. 6. A liver transplant was still a long shot and she would
need a healthy heart to have a transplant.
The pros were that
we would have Emm a little longer but at what cost to her?
Our main question, during that
meeting, to the medical staff was if they could keep her comfortable until she
passed? They assured us of this,
but this did not turn out to be entirely true. It is very difficult to watch your little girl in pain and
uncomfortable during the last moments of her life.
Right after this
meeting we knelt down, as a family, in the conference room and said a
prayer. We expressed our love for
Emmalee and how much we appreciated the time we had with her. We asked for confirmation that this was
His will and that He was truly calling her home. It was an emotional prayer for us all. I was thankful for the opportunity to
express our love and concern for Emmalee to our loving Heavenly Father.
I think we all
felt that it was the right decision and that the Lord was truly calling her
home. Even though we knew it was
her time to go it did not make it any easier, nor did we know how long she
would be with us.
We went into her
ICU room and prepared to give her a Priesthood blessing. This is the absolute worst memory I
have of this day. It still makes
me feel sad to know the impact this had upon her in the ICU. I intellectually understand, and
understand the spiritual workings of it, but I did not like being in that
position. Yet I would not have
wanted anyone else to tell her she was going to die.
Emmalee trusted me
and I had to be the one to break the news to her. I didn’t want to but what better way to do it than in a
blessing while being directed by the spirit as to what to say.
She was hooked up
to so many tubes, monitors and devices that it was difficult to get around her
bed to lay our hands on her head.
There was really only room for one person to be by her comfortably. Kara’s dad, my dad and I squeezed in
there. A few machines had to be
moved slightly. I just wanted to
get it over with. I knew what her
fate was and I knew that Emmalee needed to know. I thought it would be best to have the help of the Lord to
tell her it was time to pass to the other side. I did not know if she were even lucid enough to hear the
blessing. Her eyes were swollen
shut and her throat was swollen to the point where it was difficult to talk.
We laid our hands
upon her head and the first words out of my mouth were, “Emmalee this will be
your last earthly blessing.” I
could not believe what I was saying.
I started to break down and remembered telling her that she was going to
cross to the other side soon.
As soon as I said
this she started shaking her head violently back and forth in
disagreement. I knew that feeling
coming from her because we had experienced it many times. My heart was broken, my concentration
gone. I had no more to give
her. I had done what I was
prompted or needed to do. I had called
upon the administering angels to come and be with her. Maybe she needed to hear this at that
time to prepare her for this transition.
I am still angry
with myself for this. I find
myself regretting how I told Emm she was going to die. If I had the opportunity to do it over
again I would have talked to her first and told her that we loved her so much,
but it was her time to go. I would
have just talked to her first then I would have given her a blessing so that
she would not feel alone of scared.
I still beat myself up over this.
There are times I feel the anger bubble up inside me and I want to punch
myself. I scared Emm needlessly. I knew I had to tell her she was going
to die, but just wish I would have done it differently. I feel so bad that I scared her like
that.
The medical staff
gave us the choice to let her stay in the ICU until she passed or to take her
up to the oncology floor. We were
given the impression that once they unhooked her from the medical devices that
she would go pretty quickly.
After the blessing
I kept thinking to myself, “Please just let her go quickly.” As I would learn she still had a mission
to complete. They pulled her
arterial line out that was measuring her blood pressure. That was supposed to be very
painful. She didn’t whimper. They pulled her IV out of her hand
again without a sound from her.
They stopped the massive doses of antibiotics and the Adrenaline. They kept her on the Dopamine to keep
her blood pressure stable until she could get upstairs.
Around 4 or 5pm,
Dr. Bruggers came to say goodbye to us.
I think she knew there was a good chance Emm would die overnight and she
wanted to give us her support before she left for the day. Earlier I had asked her what decision
she would make if she were in our shoes.
Her initial
response was quick but sincere and soft.
“I don’t know what I would do.”
I could tell that she was personally affected by this situation. However, later that day Dr. Bruggers
told me given the same set of circumstances she would make the same decision we
did. It was a source of comfort to
know this and I believed her. I
did not feel she was just telling me this to make me feel like our decision was
right.
Steve Havertz, LCSW, is the author of Dragonfly Wings for Emmalee. He has been a licensed counselor in the mental health field for over 20 years. The end of the book has helpful advice about how to cope with a loss and what not to say to those grieving. It can be purchase on-line at amazon.com and on-line or at stores Barnes and Noble and Deseret Book, bn.com and deseretbook.com.