DPS Surgery- Video & Update

I woke up Monday morning, July 16^th, 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 on-lookers, food and spotty Wi-Fi. After 3 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 was 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 on-lookers. 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 (July 19th) 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.

Thank you for all of your support, tweets, emails, comments, food and prayers. It is so great to know that we are surrounded by such a loving community. Please continue to pray that her strength will increase and that the pain will subside.

***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. Its incredible to see how far technology and science have come.***