Within the past few months my life has changed, permanently. I had no choice in this change, and that is what makes it hard to accept some days. There is no one to blame. No one to turn to and say “This is all your fault!” There is just me and this hole in my life that I need to accept and keep on going. Nothing will make this go away, but God gives me strength and peace through it all. I know that He understands and cares. I don’t know how I would have made it through without Him. So, here is how it goes…
It All Started…
This story is all about my mom. The most influential person in my life and probably yours. Her name is Kathy.
I could start my story back in 1985, two years before I existed, but I’ll summarize up to August, 2012. In 1985, doctors found a hole in my mom’s heart. They believe in never closed since birth, and performed open heart surgery to patch it. After recovering, she had more energy than ever before. I was born in 1987 and my sister in 1990. Then when I was in 5th grade she had a massive stroke. Her left side went numb, but she recovered and regained full use of her left side. In 2006, she had the sac surrounding her heart removed, another open heart surgery. This was a planned surgery to relieve the heart of extra weight so it would not have to work so hard. At that point doctors told my mom that she would eventually need a heart transplant. She now had congestive heart failure. She couldn’t stand the thought of a heart transplant back then, but over the next six years her condition worsened. She had a minor stroke, which weakened her ability to swallow. Then she started to fill with fluid even though she was taking water pills, so much so that they admitted her to the hospital and gave her medication through an IV. The weakening of her heart had started to take a toll on the rest of her organs. The only option now was a heart transplant.
August 2012
This month she was in and out of the hospital to have fluid removed either by needle or strong medication through IV. Then on August 30th she was back again and this time they placed her in the ICU to await a heart transplant. I believe the time spent waiting helped her look forward to getting a new heart.
I would visit her two to three times a week. We would talk and watch the food network, her favorite channel. My Aunt even hosted a tea party in her hospital room! We ate fancy food, and wore old prom dresses, and crazy hats. This put a smile on my mom’s face. The nurses loved my mom. She wasn’t picky and would often joke with them. And my dad would bring them lots of candy. Eventually my family found a new normal which included spending many days in the ICU with my mom.
There was one problem though. The insurance company kept denying the cover the heart transplant! It finally got to the point where the hospital decided to go ahead with the heart transplant preparation without the insurance company, due to my mom’s condition. Finally, she was placed on the heart transplant list… at the very top! Soon after that and because of many prayers the insurance company complied and everything was set to go.
She was on continuous dialysis to remove her excess fluid. There was much concern about the health of her liver and kidneys, but they did a liver biopsy and checked her kidneys and believed that the would recover after she had the heart transplant.
The Time Came…
October 16th, around 1pm my mom text my and said that she will get a heart tonight. I don’t know how to describe how I felt right then. I was so happy and excited for my mom, but I also felt fear and dread. “So soon, God?”
Rodney got home from work, we ate supper, and left for the hospital…an hour drive. We got there around 7pm and walked in my mom’s room to see her listening to her favorite song ‘You Never Let Go’ by Matt Redman. The pastor was there and prayer over her. Then the ICU team came in and prepped my mom for surgery.
The heart was flown in by helicopter. It was from a teenager who was in a high speed car accident. So sad to think of another family’s loss to give life to someone else.
Around 9pm we watched my mom being wheeled into the elevator by the OR team on her way for a heart transplant. She had a smile on her face! God gave her peace… the peace that passes understanding. She knew that He would never let go of her.
The Surgery
They gave my mom a 30% chance of surviving the heart transplant surgery. They do not recommend open heart surgery a third time for anyone. The surgery would take about 6 hours.
Rodney and I left, ate at a restaurant and went home to bed. My dad and his two pastors stayed in the waiting room until the next day. At 9:30 a.m. the surgeon came to the waiting room to give an update.
The surgery was the most difficult he had ever performed with several complications. It took 10 hours to complete the surgery.
Seeing Her Again
They let us see my mom at 12:15 p.m. She was alert, moving her head, looking at us, and squeezing our hand. We talked to her and she understood what we said. She was not able to respond due to her ventilator. Her new heart was beating great! I got to tell her then that she would be a grandma! Her eyes got so wide!
The doctors told us that her liver was much worse than they thought it was. The surgeon saw it during the surgery. My mom was on a portable heart and lung machine due to a reaction with a medication.
Progress
My mom continued to get better. They started taking her off medications, her drainage decreased, and she was moving her fingers and toes on command. They would soon remove the portable heart and lung machine, which would required surgery. They also planned to open her up again to clean out any clots from the surgery, but did an ultrasound and found that they cleared out themselves.
Bad News
Day 5 after her surgery, she became unresponsive. They did a scan and found bleeding on her brain. They immediately removed the portable heart and lung machine to stop the bleeding.
Day 6 they discovered that her ammonia levels were way too high and started giving her medication to lower it. They believed that this is why she was unresponsive.
Good News
On Day 11 after the surgery, my mom started to respond again. She opened her eyes and mover her fingers and toes. The bleeding on her brain had stopped and the doctors did not believe that it would have caused any damage. Her weight was now 75lbs.
On Day 16 my mom was starting to respond again, nodding her head yes and no! They did a heart biopsy and there was no rejection!
Bad News
Day 17, my mom started to show signs of infection. They couldn’t find a particular source, but did as much as they could. This wore on her and she became less responsive again.
Good News
From Day 18 to 28, my mom continued to make progress in recovering. She was to the point of moving her arms, mouthing words, and laughing until Day 29.
Bad News
Day 29, my mom went unresponsive once again. The did some tests and found that her bilirubin level was high, indicating that her liver was struggling. They planned to do liver dialysis soon to help her liver rest a little. She also started having seizures. They put her on a small dose of anti-seizure medication because it is very hard on the liver.
Day 33, she continued to have seizures. They did the liver dialysis for three days to rid the liver of built-up toxins, but the results were minimal.
The Meeting
Day 34, The hospital team informed us that they have done everything they can do and are out of options. My mom’s new heart is working fine, but her kidneys and liver are not recovering.
The Final Day In The Hospital
On Day 41, my mom’s blood pressure started to drop. It continued to do so until Day 44 at 1:32 a.m. when she passed away. The date was November 30, 2012.
My Thoughts
Her 50th birthday would have been December 9th. My family celebrated her 1st birthday in heaven by going to her favorite restaurant.
God is good. My family and I were overwhelmed by the amount of support we received. I was overwhelmed by the tremendous amount of support my husband and I received from our church! Prayers, cards, emails, thoughtfulness, meals, flowers, and so much more!
I did not realize the emotional stress I was under while my mom was in the hospital. I felt like I could not enjoy myself because my mom was is discomfort. It wasn’t fair, in my eyes, how I could be comfortable and she could not. A few days at home I just laid on the couch because nothing else mattered to me. I just needed to be with my mom.
The days soon after her surgery I had a hard time leaving the hospital to come home. I felt like I needed to be there to hold her hand. Then Jesus told me that He was holding her hand when I wasn’t.
Oh, no He never let go of you, Mommy. Instead at the perfect time He pulled you into heaven with Him. I’m so glad that you are experiencing far more joy and comfort than I can, but I miss you.