Mom Gets a Diaphragm Pacing System

by Tara Turner on Mon, 2013-04-01 12:25

Tara Turner

I woke up Monday morning with an anxious heart. It was early, Craig was out of town, and I knew that the day was going to be filled with a lot of emotions. As I prepared myself to stand beside my family and support each member in their own unique way, I prayed for strength and faith that I would trust I wasn’t alone.

I was the first to arrive, and as I opened the door to my mom’s hospital room, all I could do was smile. Just being able to walk into her room and see her sitting there so calm and full of peace was a blessing. Slowly my dad and aunt trickled in. We filled her room with small talk, laughter and prayer. My brother and his wife quickly followed behind and within minutes they came to move Mom into pre-op. We stayed with her as long as we could. We spoke with the doctors and found reassurance in their confidence.

I have to be honest, there is something so sacred, beautiful and completely frightening about that last hug before they wheel your loved one away. It becomes a moment that etches itself into your soul. It creates a memory that never gets lost in the shuffle. 

We made our way into a dark, cluttered waiting room. It was cold and uninviting. We collectively chose to leave and hang out in the main lobby of the hospital, next to a Starbucks of course. As the hours slowly passed by, we entertained ourselves with the drama of nearby onlookers, food and spotty Wi-Fi. After three hours, we were greeted with enthusiasm from Mom’s surgeon. He spoke of how smooth everything went and how great Mom was doing. He eagerly showed us a video he captured on his phone of Mom’s diaphragm before and after the pacer was placed. His attention to detail and nurturing personality were welcomed with open arms. He truly cared about Mom’s well-being and the rest of us waiting to see her.

As we stood there crowded around the surgeon and his phone they wheeled Mom past us. She was shaking and completely out of it, but it felt so great to see her even if for just that split second. We were walked down to the cardiac/lung ICU waiting room where we were once again greeted with onlookers. Everyone gathered for the same purpose … everyone waiting on a loved one.

We waited for what felt like an eternity to go back and see Mom. The relief and peace that filled each one of us as we laid eyes on her is not something that is easily explained. We all sat in silence as she faded in and out. As she found strength, she greeted us and “talked” as much as she could. At times, using her phone and Speak it! app took more strength than it was worth.

In the early evening, we were instructed on how to use the diaphragm pacer. It was a crash course that I wish had been conducted differently. The woman giving us our lesson was rude, abrasive and in no way gentle with my mom. As she pulled on the freshly placed wires and ripped the surgical gauze and tape from Mom’s body, it was all we could do to stand there and listen. It became overwhelming and sent my dad over the edge.

There is a lot more to this new adventure we are embarking on than we were prepared for. In the midst of our crash course, the surgeon came in and told us that Mom had a pneumothorax (collection of air around the lungs) and would need a chest tube. Although this is a known complication of this surgery, it was hard to hear. It filled the room with a black cloud and sent our anxiety into overdrive. Knowing she was in great hands made the situation bearable but in no way was it easy. We were scared, and the tears began to flow intensely.

As Dad stepped away to clear his head, the rest of us just stood there in silence. We stayed as close as possible, hugged and kissed her as we silently prayed and watched them whisk her out of the room. As she left, the room felt cold and uninviting. Feeling overwhelmed and tired yet knowing we needed to keep some strength, we made our way to the hospital café and ate dinner as we waited.

The next few days were intense. The nursing staff was incompetent, denied Mom essentials like a cup of water, pain medication and respiratory therapy. It was clear they knew nothing about ALS and took no time to educate themselves. It was stressful, infuriating and heartbreaking. But, in the end Mom made it through her stay with incredible grace. She was released Thursday afternoon and has been recovering at home. She is still in a tremendous amount of pain, but she is getting stronger every day. She started on a light schedule with the pacer, using it three times a day for 30 minutes at a time and now is building up to use it throughout the night.

We strongly believe that this was a great decision for her and for our family. We have faith that this pacer will help Mom and give her a greater quality of life.

If you are interested, below is the video of her diaphragm resting/working on its own and how it works with the pacer. You will notice that it barely moves on its own. Once the electric current is sent through the wires, you will see the diaphragm contract and fan out. It is an incredible difference and really shows how little her diaphragm works on its own. You will begin to see the diaphragm contract around the 45-second mark and 1:10 mark of the video. It’s incredible to see how far technology and science have come.

This blog was originally posted Aug. 1, 2012

Editor’s note: The NeuRx Diaphragm Pacing System (DPS) developed by Synapse Biomedical is designed to electrically stimulate the movement of the diaphragm, the main muscle used in breathing. The DPS received approval from the U.S. Food and Drug Administration on Sept. 29, 2011, as a “humanitarian use device,” a designation that means the probable benefits of the device outweigh its risks. In order to more definitively assess the benefit of the DPS in people with ALS, MDA is currently co-sponsoring a phase 2 clinical trial assessing its ability to improve respiratory function and quality of life. To learn more, see MDA Funds Efficacy Trial of Diaphragm Pacing System in ALS and Physicians Push for Proof of Diaphragm Pacer Benefit.

About the Author

I am a twenty-something, vibrant and creative new mommy to the most handsome and charming little boy! I live a life of passion and find joy in God's creation. I have created this blog in honor of my beautiful mom Linda! She is my inspiration and my best friend! On Nov. 30, 2010, she was diagnosed with ALS, a devastating and heartbreaking disease. My desire is for this blog to bring encouragement and hope to other families who are suffering with a terminal illness. Grab a cup of coffee or some lemonade, and join us as we laugh, cry and celebrate this incredible life we have been given! Tara Turner lives in Gilbert, Ariz. Check out her blog, A Beautiful Life: One girl’s journey through the trials and grace of supporting a mom with ALS.

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