My mom is the strongest, nicest, most compassionate, most loving, and most tenacious woman I know. She is, simply, amazing.
Right now, she’s lying unconscious in ICU at Florida Hospital, Celebration Health, near Walt Disney World in Orlando, Florida. She endured six long, extremely high risk, hours of surgery yesterday and, despite the odds, emerged on the other side.
A little back story is in order here.
In 2002 my Mom had a stress test to test her heart. In the middle of the stress test she had a heart attack. A minor one, but a heart attack to be sure. The doctors immediately ordered a single bypass to rectify the problem.
The bypass went well and she was in recovery when the unimaginable happened. Her body started shutting down and she was in imminent danger of losing her life. The doctors were at a loss; something was putting pressure on her kidneys and putting her in extreme distress. Unless immediate and urgent action was taken, she would surely die.
She was wheeled into surgery and, with no other options on hand, they performed an “open belly” surgery on her. In essence they created a giant ventral hernia – opening up her abdominal wall and removing her intestines from her body cavity in a last-ditch effort to save her life.
It worked. The culprit ended up being a cecal volvulous, or a kink/obstruction in her intestinal tract. With the volvulous repaired and her intestines outside of her body, her kidneys started behaving again and she started stabilizing.
Unfortunately it didn’t end there. Within just a couple of hours of the open belly, her volvulous ruptured and the contents of her intestines spilled into her body cavity. She was now in extreme danger of going into septic shock.
Frantically, the doctors cleaned her up, isolated her, and hoped for the best. The best didn’t happen – she went septic, and got a hospital-borne infection as well. It looked like we were going to lose Mom. The entire family prepared for the worst, confused and frightened, wondering how a simple heart bypass surgery could escalate into such a catastrophic series of events.
Mom was put into a coma for three months as she battled the infection. The entire family spent every free moment in ICU with her. I would take my guitar up to her and play songs to her every evening. My brother would sometimes come and sing along as I played. My sister and I were the gatekeepers of every visitor and functionary in the ICU. We knew who they were, what they were doing, and why they were doing anything to Mom.
More than once my sister and I saved Mom’s life by being prepared and preventing communication failures between the staff and doctors at the hospital. Had we not been there, decisions would have been made that would have led, at best, to a delay in her recovery and, at worst, to her death.
Slowly, so very slowly, Mom fought her way back to health. Against all the odds, one day she woke up; lucid ready to start living again. She has some amazing stories about her experiences in ICU when she was in and out of a coma; visions and dreams she had, fragments of conversations overheard, her thoughts and feelings on it. I can’t begin to describe them here.
Once she was able, she moved out of ICU and into recovery where she quickly went into rehab and learned how to walk again, and do all the things that she could do before.
One problem, though; her intestines had never been put back into her body. Her abdominal wall was wide open, her intestines spilled out, and covered with a skin graft taken from her legs. She was told that she would never have them put back in again.
And so, she has lived for 8 years with her intestines sitting outside of her body, and a gaping wound in the fistula (hole in her intestines) that fills a bag every day. Her skin graft has been slowly stretching over time, creating an ever bigger and more bulky pannus that hangs lower every day. On top of that, it’s been slowly eroding as well.
We found out 2 weeks ago that in all likelihood her skin graft would rupture in the next six months and she would face another extreme life-threatening situation. Surprise, though, her doctors thought they could put her back together again!
It was a risk, but a necessary one. With her breathing issues, heart problems, and her general frailty, the surgery to put her intestines back in her body cavity is high-risk. She might not make it out of surgery.
My mom never blinked. The quality of her life has been deteriorating for years as her pannus grew. She was in constant pain, although she never complained, and she was unable to do anything for the family at all. Even walking from the bedroom to the kitchen had become a monumental task for her. She wanted the surgery.
The two weeks leading up to the surgery were a whirlwind. I hadn’t seen my mom so excited and happy in a long time. She had a plan. She had a doctor who she could trust. She had a vision of the life she was taking back.
And so, yesterday, I kissed her on the forehead as my brother and sister did the same. We told her we loved her and that we were very proud of her. With a smile, she was wheeled back into surgery. I wasn’t nearly as calm as my exterior presented myself to be. I didn’t want to appear weak or uncertain in front of Mom, but I was scared to death.
I thought that maybe I had said goodbye to my Mom for the last time. A lump, cold and hard, was in my chest for seven hours as she was in surgery.
My wife, my brother, my sister, and my father waited as well. We played cards. We laughed. We talked deep discussions. We squabbled. We did anything to distract ourselves from the reality – from the realization – that Mom was on the operating table engaged in another battle for her life.
She came through the surgery. The doctor said she did well, but the way wasn’t clear yet. “Tweaks” and “adjustments” would have to be made over the course of several days. Her blood pressure is low, her blood sugar is high, and she’s breathing only with the aid of a ventilation tube right now. The trauma of the surgery could still take an unexpected toll on her body.
Around 1:00am last night I got to see her. She was in ICU and she was coming back to consciousness. She was not supposed to do that. Shes supposed to be sedated and unconscious the entire time she is on a ventilation tube. My Mom heard my voice and reacted.
She knew I was there. I asked her if she could hear me; she nodded her head. With tears in my eyes, I told her that she had come through the surgery, that she was fine, and that her belly was put back together again.
She nodded and a tear rolled out of her closed eyes. I held her hand and she squeezed my hand back.
Then the new sedatives kicked in and she slipped back into peaceful sleep.
I am sitting outside the ICU typing this blog. I can’t go back in for another 30 minutes as they perform some rounds.
My Mom is my hero. She is so strong, brave, and wonderful. I can’t imagine where she finds the strength that she has. For a second time, she is fighting for her life. This time, though, it’s her choice and she is hoping for a better life a s result of this battle.
I love you Mom. Get well soon.