Unconditional Love

A our journey with this new LVAD device began on that day in September, we really had no clue where it was going to take us, how long it would take or the true dedication we were about to face. And so it began, the next THIRTY DAYS definitely put us to the test. We started to learn so much about this thing keeping my husband alive, we met so many nurses, doctors, surgeons, case workers, physical therapist, medical techs and clergy men, that we had more on our medical team then we did friends. These wonderful people would be our new normal and we didn’t meet one that we didn’t like or that didn’t like us. They started to call us their favorite couple, the dream team. It was touching but behind the close door we felt like our world was ending.

Joe started to feel guilty and hopeless. He kept apologizing and telling me that I didn’t sign up for all this. He felt so bad that I had to care for him and that he may not live. All of his blood work showed that he was malnourished (still from the previous surgery), his levels were all low, he was still fluid overloaded and his heart was struggling to work. The doctors needed the fluid off his body, he was on high doses of diuretics to get rid of the fluid. They kept the catheter in because he could not walk. The fluid was coming off but he couldn’t eat still, his body was deteriorating from lack of nutrients and they wanted to put him back on the TPN, the crap that caused all of this in the first place. We refused the TPN because we knew it’s outcome, but Dr. Tanocka, the heart surgeon sat down with us and explained that the dose would be smaller, the drip would be less, the nutrients are essential for Joe to live. Joe respected the doctor and would only listen to him. We decided to go ahead and do the TPN only because we knew we were on borrowed time. If he didn’t nourish his body he would surely die.

A few weeks later they decided to take out the NG tube and try to introduce a liquid diet, he tolerated that so after a few days he started on soft foods. The soft foods were not setting right with him, he started to vomit again. It kept getting worse. Joe couldn’t keep anything down, and the doctors decided to put the NG tube back in. They decided to do a CT Scan of his abdomen because they felt there was a blockage somewhere in his intestines. The results came back that part of his small intestines look as if it had died and he would need surgery to repair it, but right now he would die if they were to do any type of procedure. The tube would have to stay in and the TPN would have to be hooked back up. We were devastated. He was losing all hope that he would make it and at this point I didn’t know if he would either. I had to be the one to encourage him, I had to keep his spirit alive, I had to keep him alive and this would be far more challenging than anything I had ever done in my life. How to you keep someone from giving up when you yourself needed someone to tell you to be strong. I didn’t know what to do anymore or what to say to him.

He asked for pain meds, he just wanted to sleep. I told him I needed to go and get something to eat and I would be right back. I needed to just walk away and wrap my mind around all of this. I was lost and broken and I needed to be fixed too. All I kept saying is F.R.O.G. over and over, Fully Rely On God. This was something a beautiful lady I met on the elevator had told to remember when you feel lost or broken. She was placed in my path a few weeks prior before Joe was approved for his LVAD and she sat and cried with me, told me her story and shared the F.R.O.G. saying with me. Her husband went through a stomach surgery and ended up with a triple organ transplant, he was in the fight of his life also. Whenever I feel like nothing is going our way I think of her and her husband and how they have been through so much more than us and they continue to stay positive and fight. She gives me the hope I need when I’m feeling down and I am grateful for running into her that day. I went outside, looked up and said I’m fully relying on you Lord, please help us through this. I ate, got my coffee and regrouped my thoughts. We were going to be okay. It’s going to take time.