Friday, September 28, 2012

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. 
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 and on-line or at stores Barnes and Noble and Deseret Book, and


GrahamForeverInMyHeart said...

You handled the situation in the best way you could at the time. Everything you did was done with all your love and your daughter always knew that.
I know how difficult it is to let someone go. When my mom was in hospice, we assured her that we were all okay and that it was time for her to let go.
My son died suddenly and accidentally with no warning. We never had the chance to say goodbye. I will always feel terrible that he was alone when he died.

Steve said...

Thank you for your support! I am not sure what is worse, a loved one dying suddenly or dying slowly. I guess a loss is a loss. I am so sorry about your son and your mom. Thanks for adding Emm's site to your blog

mike derocco said...

this is worse then horrible your beautiful daughter and kids like her should never go through this with that said i would never tell a child they are going to die or go to the other side its not totally your fault being under the influence of religion
i hope you can overcome the god factor and asking an imaginary deity to do this or that i wasted time with something like this when my mother was murdered by doctors i called on a priest for help looking back now 5 years i should have called the tooth fairy it would have done more good hope you areable to recover from this and recover from religion