My mom has a disease called myasthenia gravis. (Check out this post to learn all about MG) In the last couple of years, my mom has been receiving plasmapheresis to strengthen her body…
My brother Christopher’s wedding was September 29th, 2018, but the week before the wedding my mom’s neurologist let us know that she needed to be admitted for 5 days of plasma treatment. Mom wasn’t having it, because she didn’t want to risk missing the wedding. So, we prayed for a miracle. We prayed that God would give her the strength to make it through the wedding…It wasn’t pretty, but she made it. He heard our cry.
Christopher and Lenzie asked that we wait to do the plasma until after they got back from their honeymoon so that they could be here….
Tuesday, October 2nd I got put on antibiotics for a sinus infection. Thursday the 4th I dislocated my toe. Saturday the 6th I was in the E.R with a diagnosis of E. Coli. …
Lenzie and Christopher got back on Sunday, October 7th and dad actually left to go to California on the 7th for work. Mom was scheduled to be admitted on Thursday the 11th for plasma.
Wednesday the 10th mom woke up short of breath. I asked my neighbor who is a nurse practitioner to come check on mom while I headed to a doctor’s appointment. When I came home from my appointment my mom was extremely lethargic. With my brother at work and my dad in California, I called Lenzie to come help me take mom to the hospital. A lot of things happened that day, a lot of God things, but when we got to the E.R. mom’s respiratory rate was 6, meaning she was breathing 6 breaths a minute, normal is between 15-30. Mom was going 10 seconds at a time without breathing. Within 30 minutes of being in the E.R., I watched as my mom died in front of me. I laid on top of her and tried to wake her up, she opened her eyes for me as 10 people swarmed her room. She whispered “I love you” and then I was pushed into the hall as they tried to bring life and breath back to my mom. I signed the papers agreeing to resuscitate her. When I was allowed back into the room, I found my mom on life support.
Watching my mom go on a ventilator was the hardest thing I’ve ever experienced. It’s odd for me to think that the 5 days that changed my life forever, are also the 5 days that my mom will never remember.
Mom remained on life support and in a medically induced coma for 5 days. During that time, they did 5 days of plasmapheresis to try and strengthen her body enough to try and bring her off the ventilator. We tried at day 3 and day 4, but her body wasn’t strong enough, but on day 5, God breathed life back into my mom’s body. He gave her back to us.
On Wednesday, October 17th, they took my mom into surgery to perform a thymectomy, removal of the thymus gland. The thymus gland is next to your heart. In myasthenia patients it overproduces t-cells, I’m not completely sure what exactly the t-cells do, but when overproduced, they cause issues. The hope is that after removing her thymus gland, she will have a decrease in myasthenia symptoms. The kicker is that the surgery takes a while to produce results, at earliest 3 months, at most 2 years. In the meantime, mom is recovering basically from open heart surgery. They sawed through all the bones in her chest to remove the thymus and then wired the bones back together and sewed her up. She has all the post-op precautions as if she had open-heart surgery.
October 25th, she was moved to an inpatient rehab facility and stayed there until November 16th. The rehab center was able to get my mom strong enough to maneuver herself out of bed and into her wheelchair. She had many ups and downs while at rehab, which included at one point transferring her by ambulance back to the hospital. But, in her last week at the rehab center, she was able to walk 20 steps with the assistance of a walker and a physical therapist! It was an amazing sight to see.
On November 15th I had sinus and ear surgery. Surgery was a success, but there were some hiccups during and now after, involving my POTS. The recovery isn’t as bad as some of my previous surgeries, but it’s still not fun…
Back to mom, on November 16th mom was released from the rehab center into the hands of home health, emphasis on the HOME!! After a short stay in the hospital post-op for me and after a looong stay in the hospital and rehab for mom, everybody was home and right in time for Thanksgiving…talk about having something to be thankful for!!
We did enjoy a nice Thanksgiving and cherished our time at home with mom, but we were warned from the beginning that mom would most likely need to be readmitted numerous times in the coming months. After everything mom’s body had gone through, she was understandably exhausted, but myasthenia does not handle exhaustion well. She was not able to use her walker at all from the time she arrived home from rehab, a sign that her muscles were headed towards crisis.
So, on November 30th mom was readmitted to the main hospital for another course of plasmapheresis. Although lifesaving, plasmapheresis is not kind to my mom during the course of treatments. It’s always hard to watch mom go through such painful treatments, but ultimately, we know that plasmapheresis is mom’s best chance at survival.
December 7th mom was released from the hospital. The strength we witnessed coming from my mom both physically and mentally was miraculous. Mom went from being bedbound to not using any assistive devices.
Christmas 2018 was one that I’ll carry in my heart forever.
The new year brought a bout of pneumonia for me that threw me for a loop. As I turned the corner for the better, my momma also turned a corner, unfortunately not a good one.
January 8th was an all too familiar situation for us. Once again, my mom’s breathing had become labored. Mom was put in the ICU with bronchitis and told she was in myasthenia crisis…again. Thankfully, her care team worked quickly, but we were warned that she would most likely be put on the ventilator in the next 24-48 hours.
We waited with the doctor’s as they expected her to be put back on the ventilator, but she’s a fighter and our God is a healer, no doubt. Mom remained on oxygen for about a week and received 7 days of plasmapheresis (the most she’s ever received at one time), but did not have to go back on the ventilator. The plasma treatments were lifesaving. But unfortunately, her body is just so weak and fragile that the plasma has not worked to the extent that it has in the past.
Mom remained in ICU for her 9 days in the hospital, before they released her in order to be seen by another hospital in the area. We are still very hopeful that the thymectomy surgery will soon kick in and we will see a drastic improvement in mom’s health. But we need to keep her alive until that day comes.
January 22nd, Mom saw another specialist and the current game plan is to start a new infusion medication. We need time to see this through…it involves coming off of current medications, getting vaccinations to help prevent serious potential complications of the new medication, getting approved by insurance, getting approval from the rest of her team of doctors and so on. We need time, but we know with every day further that we get from plasma, mom will continue to get weaker. So, we are working efficiently, hopefully, and expectantly with all we do.
We await the positive improvements ahead of us, but until then we continue to press on…
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