Saturday, February 14, 2009

Serenity's Story Part 7 - A Heart Stopper / An Almost Broken Hope

A very discouraging part was knowing we would have to face surgery on the Mitral valve. A date was set. We began to fast. However, the doctors didn't like the fact that we were never able to get into that left ventricle (atrium?) to measure pressures. They wanted to make sure they were doing the right thing, so they ordered another heart cath to be done the day before.

This procedure was suppose to take two hours and the nurse said she would call us half way through with an update. Two hours into it we had not received an update yet. We began to get a little concerned. We continued to wait. The more we waited, the more tension began to rise. I started feeling very ill. I hadn't eaten in a very long time and the stress was beginning to take it's toll.

Finally three hours into it, the phone rang. I jumped up and ran to answer it. The woman on the other end began to explain that Serenity's heart rate dramatically dropped about 30 minutes into the procedure. She said, "We had to perform chest compressions for 15 minutes in order to stabilize her, but she's doing fine now and the doctor will be finished soon."

At that point, I thought that I was going to pass out. I started getting very pale and feeling very faint. My family instructed me to go get something to drink and rest awhile before we talked with the doctor. I wasn't gone but just a few minutes and was heading back to the waiting room when I ran into my husband and my parents.

I could tell that something was very wrong. "Is it time to talk to the doctor?" I asked. They just lowered their heads and my husband replied, "We already did." Surprised, I said, "You did? What did he say?" I could tell something was very wrong. "It's the Mitral valve isn't it?" I asked. My mother just shook her head. "No Dana, it's something much worse." Worse than the Mitral valve? What could be worse than that, I thought.

My mother continued to say, "He says that only a heart transplant can save her. There is nothing more that they can do for her here." I stumbled back, gasping for air as if someone had just hit me in the chest with a baseball bat. Heart Transplant? I never could have imagined that we would be faced with THOSE words.

I began to cry as they tried to explain her condition to me. "Why? Why can't they fix her? Why can’t they fix my baby?" I asked over and over again. I could see the hurt in my dad's eyes as he watched the hurt in mine. He just softly kept replying, "It's the heart muscle itself, They can't fix the muscle."

This was the reason for all the confusion. The reason why they couldn't decide between the mitral valve and the coarctation. She had Restrictive cardiomypathy, a physical hardening of the heart muscle, known only to progress. A disease that hardens the muscle tissue until it is no longer able to perform.

We all cried for several minutes. Then my mother wiped the tears away from her own eyes, looked sternly at me and said. "Okay are you finished? Did you get it all out.?" I slowly nodded. She added. "Okay then wipe your tears and let's get back to work. Serenity needs you to be strong and God is still in control."

Together we prayed.

Afterward, in a daze I walked back to the PICU. Once I arrived they told me that Serenity hadn't made it back to her room yet. So I walked over to the family room next to the entrance.
The room was divided into two sections by a partial wall. I noticed that no one was on the far end of the room. I walked to the back and in privacy collapsed to my knees. I began to call out to God like I had never done before.

By the time I finished, God had given me the strength I desperately needed to continue on. I was determined to find a way out of this situation. I have always been one who enjoyed learning. So I decided that I would find out as much as I possibly could about this condition called Restrictive Cardiomyopathy. I wanted to know exactly what we were up against. My husband and I made a trip to the hospital's computer lab.

It is the only time in my life that I have ever regretted learning about something. I wished I had never typed in those words. Every single article that came up read the words, "transplant or death", "irreversible damage", "no known cure,""Condition only progresses". The worse part was, most of them stated that it’s usually caused by a previous condition. Meaning, most of the patients with heart transplants ended up being reinfected by the disease and having to have another transplant.

We walked away from the lab feeling like our faith and hope had just been crushed. But God always knows when we need our faith boosters and He always comes through!


Stephanie RN BSN (to be!) said...

I am continually amazed at the depth of your faith as I read each installment of Serenity's story. Your family is incredible...but so is our God too!