She's One Tough Cookie

When my mom was diagnosed with heart failure six years ago, we never expected this is where the journey would take us. We were devastated, of course, but wouldn’t have ever imagined the devastation it would bring. Somehow though, tonight, as I sit by her bedside in ICU at Ochsner in New Orleans, I can’t help but feel thankful.

This most recent chapter in our story began on Dec. 4th. Mom was admitted to Ochsner in preparation for surgery that would take place on Dec. 6th to place a Left Ventricular Assistance Device (LVAD) that would help her heart function until she could receive a complete transplant.

The morning of her surgery, our entire family gathered by her bedside. Her surgery that was supposed to begin at 8 a.m. would be delayed until the afternoon due to an emergency surgery for another patient. While we waited we laughed, talked, she kissed Harrison and we all prayed for a smooth procedure. After lunch we moved to a waiting room on the third floor and as minutes turned to hours we anxiously awaited word from her surgeon, Dr. Aditya Bansal, that the surgery was complete. He came out around 6 p.m. He was smiling and said the procedure could not have gone better. He instructed us to thank the Lord for that blessing and to get dinner before we were able to see her in ICU later that evening.

Dr. Bansal is one of the top 5 surgeons in his field. He's performed more LVAD surgeries than 99% of similar surgeons ever will. Most importantly: he's a Christian. We knew Mom was in the absolute best of hands with him and his team.

The next morning, Dr. Bansal and his team took Mom back to the operating room for the routine procedure of "closing her chest." In the hours after this surgery they leave your chest "open" to monitor the pump and watch for bleeding. The closing procedure also went off without a hitch. We spent Friday afternoon sitting in her room talking and planning her speedy recovery. Things had gone so smoothly that when the hotel connected to the hospital did not have any rooms for us to book Friday night, we all decided it was safe to go back to Baton Rouge. We left my dad there with Mom and caravanned back to Central. Once home around 11 p.m., we left our bags packed and went straight to sleep. Harrison was glad to be back in his bed.

The next morning, around 5 a.m., Dad called me to let me know that Mom's lab work had begun to "trend in the wrong direction." Little did we know, this was a phrase we would begin to hear with more frequency in the coming days. By 7 a.m., Grannie, Pops, Claire and myself were headed back to New Orleans as they planned to take mom into surgery to examine her LVAD and her abdomen for signs of complications. She was in surgery from about 7 a.m. until about 3:30 p.m. and Dr. Bansal ended up replacing her LVAD with a new one due to a blood clot in the pump.

Mom was sent back to ICU to recover. More of our family had arrived by now and we all sat out in the waiting room having no idea the terrible direction things were about to go.

Dr. Bansal sent a nurse to urgently come get Pops, Dad and me. As we walked down the hall, I knew something wasn't right. When we walked into moms room, it was full of doctors and nurses. Machines were beeping, doctors were calling out orders and Dr. Bansal asked us to take a seat on the couch. He went on to tell us that Mom was experiencing severe complications. Her body had begun "throwing blood clots to her limbs and organs." I'll never forget hearing him tell us "there's nothing we can do. It's time to say goodbye." He showed us her left arm and leg...they were black. With tears streaming down our faces, we cried out to the Lord for healing and to protect Mom. We had church in that ICU room. I couldn’t even tell you who was there. I laid hands on Mom and screamed “Jesus heal her. Take this sickness away. Devil you aren’t welcome here. I command you to leave in Jesus Name.” Mom's heart was out of rhythm and I could hear the nurses preparing the crash cart in order to attempt to resuscitate her once her heart inevitably gave out. It was awful and a day that has forever changed me.

Dr.  Bansal pulled Pops, my grandfather who is also a physician, into the hallway. He told him that the only option they had was to immediately amputate mom's left arm and leg. Even then, Dr. Bansal said it likely would not work and she would likely die on the operating room table. He told Pops the decision to proceed with surgery had to be made...quick. We all decided that we had to give mom a chance to fight. We told Dr. Bansal to do what needed to be done. As we returned to the ICU room, we were amazed to find the color returning to her limbs and her heart rate slowing and falling back into rhythm. The doctors and nurses could not explain the sudden change. The muscle in her leg was already severely damaged and her arm had suffered damage as well. Dr. Bansal still had to take her to the OR but now the focus was on trying to save her left leg. He told us as he left that she was still in critical condition and may not survive a surgery to attempt to save her leg. Though it was the only hope we had.

After several more agonizing hours of sitting, praying and crying, Dr. Bansal walked out and over to our group. She survived. The chief of vascular surgery had performed a double fasciotomy to relieve pressure from her muscles in her left leg that were constricting blood flow. She was headed back to ICU to recover from her 6th surgery.

As we all returned to our hotel rooms that night, I'll never forget the feeling of devastation and fear. The doctors had made it clear that this might not fix the problem and Mom was still very critical. I knew deep down that this wasn’t the end of complications and the road ahead of us was long.

At 4 a.m. that next morning (Dec. 9th), I got a devasting call. Mom's CPK number (a number that measures dying tissue) had risen significantly over night. Her leg was still dying and they were taking her back into surgery to perform an above-knee amputation. I felt like someone had ripped my heart out. We all rushed back to the waiting room to wait and again pray that this would save her. Yet again, we were told it was our only option and it still might not fix our problem.

So here we were, back in the dreaded second floor waiting room. Waiting, praying, and begging God to not let this be the end of Mom’s story. I was so tired, I could barely hold my head up. I was mad. I couldn’t believe this was happening. How in the world am I going to tell my Mom what had happened? Devastation doesn’t even begin to explain the emotions we all were experiencing.

Hours later, the vascular surgeon came out to let us know that mom was alive and the surgery was complete. He was unsure if this would fix the problem but did assure us that her leg was past the point of saving. If this was the problem, the CPK number would slowly lower over the next 48-72 hours and those next hours would be critical. For the rest of that day, we prayed over Mom and spent the day thanking God for another day with with her.

That next morning (Dec 10th) Mom’s CPK value was still rising. It was clear to us that this was probably the end. Dr Bansal flat told us again “There’s nothing else I can do.” She was in liver failure, kidney failure, her arm was still showing signs of dying, and so many other things were going wrong in her exhausted body. He told us we should keep her comfortable and discuss end of life plans. He handed us a DNR and told us we should decide what her wishes would be. I stood in that hospital room and yelled at Dr Bansal. I told him I wasn’t giving up on her and he shouldn’t either. He looked at me with tears in his eyes and said, “If I was going to give up on your mom, I would have days ago. I’ve spent 26+ hours in surgery with her and I’ve canceled 2 conferences to be sure I was here with you all.” I knew he was right, but my heart just couldn’t accept it. I wept over her bed and begged God for more time. How was I supposed to have my baby girl without my Mom there with me? The pain was unimaginable. Dr. Bansal also suggested we bring my little sister, Sophie, in to see her mom and say goodbye. I'll never forget the look of hopelessness on her little face...

We called friends and family from out of town and let them know they should come now. So many precious people were there for me that day and it’s something I will never forget. The hospital brought in a child life specialist to talk with Sophie. It was just horrible y’all. I can’t even put it into words.

That day I learned, that as a Christian, we sometimes have to be ok with the Lord’s will. That is such
 a hard thing to do. For the first time, I prayed for His will. I didn’t know if that would be a life with Mom or a life without. My world was crumbling around me and all I had left was the hope of the Lord’s will.

As that awful day went on, Mom’s lab levels slowly started to improve and by that next morning (Dec 11th) they were much better. Although we weren’t anywhere near out of the woods, we were finally moving in the right direction. Yet again, the Lord proved the doctors wrong.

Wednesday morning (Dec 12th) we were awoken by a call that Dr. Bansal decided she was stable enough to close her chest. Praise the Lord! This was a big step in the right direction. We were so blessed by this call and the good news.

Everyday since then has been a rollercoaster. We watch every lab result closely and pray constantly that we won’t have anymore setbacks. This last Sunday, they exubated Mom and woke her. She did well for a good 36 hours and we enjoyed getting to communicate with her some. By Monday afternoon they decided that we would have to put the ventilator tubes back in because breathing unassisted had become too much work for her. She needs rest. She’s been through so much and her body needs to recover. The hope is that Friday they will put in a Trach. This will help get her breathing on her own and make the transition easier. This will not be a permanent thing just something to help her recover.

Mom still has such a long road ahead of her. At times it seems impossible. We have struggled with the overwhelming road that is ahead and are constantly praying that God will give us the strength to make it through every hour and every day. We still have many hills to climb and corners to turn, but I have no doubt that the Lord will continue to carry us through each moment.

One moment we need specific prayer for is when we have to tell Mom about her leg. She’s still very unaware of all that has happened. Please pray that the Lord will prepare her heart for this news. I know my Mom well. She’s going to be devastated, but she’s also the strongest person I know. If anyone can take this news and overcome it, she can. Please pray for that.

Please continue to pray for all of us and that Mom has no more setbacks. There isn’t much more she can handle. I will do my best to keep this blog updated as we continue on this journey. My mom is One Tough Cookie and I have no doubt that she will overcome this battle. We love you all.