TJ’s heart surgery took around six hours. Throughout the surgery, a nurse went back to the OR and checked on the status of how things were going. At each check-in everything was going well. Right before her very last check-in, she told us that this was the most critical part of the surgery. I started praying as I watched her leave the waiting room. When she came out, she said she stood in the doorway, and the surgeon gave her a thumbs up. Relief washed over me. We were almost done.
The surgeon came out after it was over. The first thing he said was, “It was complicated.” I caught my breath and immediately asked him, “But he’s okay; right?” He nodded. That was my first inkling that something was wrong, but the surgeon said he was okay, so I quickly pushed it out of my head.
I then went upstairs to TJ’s room and sat with him until he woke up. The first thing he said was, “Mom, I didn’t die.” Sigh. We had gotten through it. But almost right away we noticed he couldn’t swallow and couldn’t move his eyes. His eyes were pointed down, and he tilted his head back to look at us. We told ourselves it was just the anesthesia, and it will go away soon.
But as the hours ticked by, it wasn’t going away. In fact, things were getting worse. He was becoming increasingly confused. He was hallucinating and saying crazy things. He ripped his IVs out and had to be tied down to the bed.
As the week progressed, he continued to worsen. Even though his confusion got better, his talking became a whisper, and then he quit being able to talk altogether, and he stopped being able to write. He couldn’t hold his head up anymore. His mouth started clamping shut, and he tried desperately to pry it apart. He started biting his tongue and lips and would squeal in pain. He was coughing and coughing and choking, and it went on and on for hours. We were trying desperately to suction him, but because he couldn’t open his mouth, we couldn’t get the secretions out. At one time he whispered, “This is miserable.”
A week after the surgery, he went into respiratory failure. During intubation, his lungs had been over inflated, and the increased pressure blew holes into his lungs. His entire body filled up with air. They then put chest tubes in, which are very painful, to remove the air. They also at this time discovered blood clots in his lungs, which can be fatal.
The doctors were very confused about what was happening to him. His MRI had a few little infarcts on it, which are areas of oxygen loss, but they said it wouldn’t be causing what was going on now.
They thought he might have an autoimmune disease, Myasthenia Gravis, that may have been triggered during the surgery. They were testing for it, and we were anxiously awaiting the results that would shed light onto the mystery.
I spent a lot of my time walking the halls and praying. I was terrified and physically sick from the intense fear that gripped me day and night, but I knew I had a choice to make. I desperately wanted to cave into the fear and scream and go berserk, but I chose to have courage and walk through the fear believing that God was by my side.
Right before TJ’s surgery, I had taken a Beth Moore Bible study called Believing God. During that study, I learned that the Christian life wasn’t just about believing IN God, but it was about believing what God says and taking God at his Word. I was now at a crossroads. Was I going to take what I learned and apply it to my life, or was I going to remain untouched? I chose to trust Him, and He showed me He was with me every step of the way.
TJ’s Myasthenia Gravis tests came back negative. I was really hoping and praying we would get a diagnosis and then they could fix him. Despair was knocking on the door, and it was a battle to fight it off. Exhausted, I laid down on TJ’s couch. I didn’t know where to go from here or how to help my son who was suffering so miserably. And I was so scared. I drifted off to sleep. I don’t know how long I had been asleep, but I awakened to the song by Casting Crowns Praise You in This Storm going through my head.
As the thunder rolls
I barely hear You whisper through the rain
I’m with you
And as Your mercy falls
I raise my hands and praise
The God who gives and takes away
And I’ll praise you in this Storm
And I will lift my hands
That you are who you are
No matter where I am
And every tear I’ve cried
You hold in your hand
You never left my side
And though my heart is torn
I will praise you in this storm
God’s presence was so near to me at that moment, enveloping me, drawing me closer. I was not alone.
Immediately after, the neurologist then came in and said they were now going to test for another autoimmune disease called Guillain-Barre. At that moment hope sprung to life again within me. Not long after that, I received a text message from a friend who I hadn’t talked to in weeks. She had heard what we were going through and sent me a YouTube video link. I clicked on it, and it was the video Praise You in this Storm by Casting Crowns.
God is so good! I knew He was with me. He knew how much this was hurting me, but He wanted me to praise Him despite the terrible storm I was in. I decided that no matter what lay ahead, I wasn’t going to get angry at Him and turn my back on Him but that I was going to trust Him and remain faithful.
“Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you, yes, I will help you, I will uphold you with My righteous right hand.”