Life or Death Decisions: A Blessing or a Curse

I am grateful for the chance to be so involved in my son's care at the hospital but some days I wonder if it is a blessing or a curse. I am grateful to be at his bedside when the doctors visit and to hear their thoughts as they assess my son. I am grateful that our new house is a 6 minute walk to Michael's work and only a half hour away from the hospital that is best fit to meet Ethan's needs. I am even more grateful that I have a pull-out bed at the hospital so I can spend the night and be with my son 24/7. I am truly blessed in this situation and I have so much to be grateful for. It really is a blessing to be so involved in my son's care because I am a constant for him. Each nurse is different and the nurses change shift every 12 hours, but I am there for him, and I will always be there. However, when it comes to a 'life or death' decision, I am the one the doctors look to to make the decision and that is the hardest thing I have ever, ever done. I knew as a parent I would have to make decisions for my child but I didn't think I would be holding the life of my child in my hands to be left thinking "what if?" I am grateful for the blessing, and I do consider it a blessing to have a say in my child's care, but twice I have questioned if it is a 'curse'.

The first time I wish I didn't have to choose was the night of Ethan's first surgery. The doctor came up after 20 hours of surgery and said we had three options. We could choose to just stop support and see if he survived, keep reviving Ethan until he didn't come back, or put him on an ECMO machine that would cause more bleeding, the very reason he was doing so poorly. Last week we were faced with another decision and we were presented with two choices. We could choose to trach Ethan to postpone surgery and watch him limp along possibly making his heart worse or we could perform surgery, open a fresh incision, and put him on by-pass (a heart and lung machine), the very thing that almost killed him. I wish I had a doctorate degree in pediatric cardiology, neurology, heart surgery... everything! I wish I had the education to make that decision! I went to school, I have a college degree, but what I learned and what I was trained for doesn't help me make this decision! I wish I knew, I really do, but I don't know anything about the heart or how to perform open heart surgery or what the chances and risks are or how much better one option is over another. The doctors did a great job at answering all my questions and presenting the risks associated with each option but I didn't want to rely on their education, I wanted to have the education and knowledge in my head because I knew there had to be something they weren't telling me! Did they really consider all the options? Was there any other way?

The cardiologist and heart surgeon seemed to have different opinions. The cardiologist said he had to have heart surgery but the surgeon thought his heart could grow on it's own. (Normally the heart would grow on it's own if Ethan's heart didn't take such a big hit during the previous surgery.) I turned to the heart surgeon and asked "if this was your child, what would you do?" And it was hard for him to say. All the doctors knew Ethan didn't handle by-pass well and that it was a miracle he pulled through, but somehow he and the cardiologist presented a third option: We could extubate Ethan one last time and see if he could breathe on his own. Maybe Ethan's heart would grow and he wouldn't need surgery! Otherwise we would go back to the first two options.

And so we asked every doctor, every nurse, every respiratory therapist that entered the room, every person that knew Ethan and had worked with him what he/she thought. Each doctor, nurse, respiratory therapist, etc. had training that we didn't have and so I wanted their opinions, their education, their experience but each one was different and again and again each of them said "it's up to you, it's your decision." But I'm not trained! I have no background or experience. This is my first child, I don't even know how to be a mom!! The decision weighed heavily on my mind and I saw no end. If I chose one path and it ended poorly, I couldn't live with myself thinking "what if?" What if we had waited? What if we chose the other path?

I knew then, and I know now that there is a God. He is the master physician. He knows everything about the heart because He created it. He knows our bodies because He created them and He knows each surgery because He helped inspire the men and women that discovered them and performed them. He knows Ethan better than I know my own son. He knows how to be a perfect parent because He is our Heavenly Father. He loves me and He loves Ethan perfectly. So, "why would God ever let you make an incorrect choice?"

This 4 minute video describes our situation perfectly. It is about a boy and his dad who go site seeing for the day. On their way home they approach a fork that they couldn't even remember existed and decide to pray to know which path to take. The young boy felt strongly to take the path to the right and so did the dad but after traveling a few hundred yards it ended at a dead end. They had to turn around, go back to where they started at the fork, and take the path to the left to return home. The boy then asked his dad why they had felt, after praying about it, so strongly to go to the right only to end at a dead end.

In our situation, Michael and I felt very strongly that we should try extubation one more time. The doctors didn't believe he would last more than two days. When Ethan made it past two days and started smiling, growing, and developing we started thinking he might not need surgery, his heart might grow on its own! But then, we hit a dead end. He started to struggle and we didn't want to approach a slippery slope, so we turned around and went back to where we started. He was reintubated (back to where we started) and now we take the path to the left and will do surgery. But why did we feel so strongly, after praying about it, to take the 'path to the right' only to 'dead end' and go back to take the 'left path'? The words of Elder Holland are profound! "I think the Lord, His wish for us there and His answer to our prayer, was to get us on the right road as quickly as possible with some reassurance, with some understanding that we were on the right road and we didn't have to worry about it." Video Link Here

Wow. That is just what I needed. We went down that path, we extubated him one last time, so we would know quickly with certainty and conviction that surgery was the right road for Ethan. I need not fear to ask "what if?" because I know this is the right path. Ethan needs surgery, the doctors told us that, but Heavenly Father knew me and helped me see that Ethan really does need surgery in a way that would bring peace to my mind. He knew that I needed to take the path to the right, to the dead end, instead of just being told by someone on the side of the road (the doctors) I think you should go to the left.

I love the encouragement Elder Holland gives at the end to keep going, "pray and trust, be believing... don't jump ship." This road will be bumpy and it will not be easy. I know what Ethan will look like after surgery because we were just there a month ago. I know it will take a long time to recover and in some cases he may not recover and that is where I take comfort knowing that Heavenly Father has a plan for me and my family.

A key learning from the words of Elder Bednar who shared a story about a newlywed couple that, only a few weeks after being married, found out the husband had cancer was to "Not Shrink." Elder Bednar said this, "I have shared this episode with you because John and Heather, who are just like so many of you, came to understand that not shrinking is more important than surviving. Thus, their experience was not primarily about living and dying; rather, it was about learning, living, and becoming."

Not shrinking is more important than surviving. Our experience with Ethan isn't just about living and dying but about learning, living, and becoming. Having the opportunity to make difficult decisions is a blessing not a curse because I am growing closer to my Heavenly Father and Savior each and every day. Tomorrow is Ethan's second heart surgery and I know God is a God of miracles and that He can heal my son. I don't know if He will heal my son but I know that He can according to His will and plan for I know that His plan is greater than my own. This is my testimony, in the name of Jesus Christ, Amen.