MRI Results - Headed Home Part 8 September 10 2015, 3 Comments
Tuesday September 10, 2013
After I dropped Remy to school at 9am, I headed for NCH. Mom had kept us up to date during the night which she said went very well. Surprisingly, they were able to wean him to just a nasal cannula over night. I swung by Starbucks to get a coffee and remember feeling encouraged and a bit lighter knowing Bryer seemed stable and improved from our scary weekend. I couldn't wait to see him.
I pulled into the parking garage and was thankful for the short jaunt up to the 2nd floor. The hallway seemed bright, the sun bursting through the windows and oversized glass doors of each room as I made my way to Bryer's. I arrived at his door and it was open. The curtains were already pulled back. It was so light and sunny, almost cheery. And there he was, his mess of dark hair standing out against the crisp white of his bedding, nasal cannula in place with eyes open. It was such a welcome sight. Under the circumstances, he looked so handsome… and big! I felt happy.
There was an ultrasound tech there doing a scan on his leg which had formed a blood clot from a complication with his Central Line placement a few weeks earlier. I took this video to show Justin and the kids later. He even talked just a tad:) It was during this time I noticed a ding on his monitor. It indicated his temp was rising, which they had under control for the last 24 hours.
After the ultrasound was done, I asked to hold him and we got comfy in the soft rocker between his bed and the door. Mom perched herself on the end of his bed facing me so we could visit.
Not long after we were settled, two neurologists in white coats and black dress shoes came into the room with Dr. A trailing behind who closed the door and pulled rainbow the curtain. They had come to discuss the brain MRI results from the day before. One stepped forward.
"Hi. Are you Mom?" He said looking at me.
"Yes, I am."
"And you are...?" He said looking at my mom.
"I'm the Grandmother." Mom replied.
"Hi." He said reaching out his hand towards me. "My name is Dr. Lowe. I am an attending Neurologist. We've come to discuss the results of Bryer's brain MRI. Is it ok to discuss now?" He said looking at me and then my mom.
"Yes. Whatever you have to tell me, you can say in front of her. It will save my breath since I will tell her it all anyway." I said smiling.
He then went on to introduce the other standing nearby, I think a resident? Next he pulled over a computer…I think it was just the one that is on wheels in the room that nurses chart on? It's an unnecessary detail, but it's bugging me that it's fuzzy. Perhaps they wheeled one in with them. Regardless, it soon came to life with images of what my untrained eye could clearly see to be a brain. Bryer's brain.
He began talking and pointing and changing pictures of Bryer's images on the screen.
I knew something was coming. Some type of news was on their lips. You could tell just by their demeanor and how they entered the room. I continued to rock Bryer as I listened.
"Do you see these white areas here?" Dr. Lowe said as he pointed. "These are consistent with deterioration and brain shrinkage…They're almost look like lesions."
"Upon comparison with his last brain MRI, it could be said that Bryer's brain has completely deteriorated." He continued in much greater detail and then added, "Unfortunately it will only continue to deteriorate. I am so sorry, Mrs. Largent."
The information sank in as I rocked. I felt heat rush over me as it did. I wasn't shocked at such news, but it was still heavy. It's hard to describe, but there was also a sense of so-that's-what's-going-on relief. It certainly wasn't the answer or information we would wish for, but it was an answer nonetheless. After almost 11 months of no prognosis for Bryer, we had a definitive one put right in our laps.
"So what does this mean?" I asked knowing the answer, but not wanting to say the word.
"The deterioration will continue and he will eventually lose all function." He answered. "By appearance, it looks to be very much in line with Leigh's Disease, a type of mitochondrial disease. Typically when kids are diagnosed, their health is right about here (putting his hand out in front of his face as a measurement) and they continue to decline over a period of time. Bryer's health is here (putting his hand out in front of his chest as a lower measurement). He doesn't have very far to go."
I had stopped rocking and just looked down at Bryer who was awake in my arms. I cannot remember if I cried. If I did, it wasn't break-down sobs...Perhaps just silent tears slid.
I had become well versed in mitochondrial disease as a possibility of something Bryer could have as he fit the phenotype. However, weeks later we would meet with our geneticist whose emphatic stance is that Bryer did NOT have mitochondrial disease. His genetic testing did not line up with the neurologists clinical thoughts. Bryer had his Whole Exome Sequenced, which is the highest level of genetic testing one can have done. It had come back inconclusive and all of his mitochondrial DNA was normal. I could go on, but genetics is tedious and complicated.
The point is, though we had a HUGE piece of the puzzle solved by the information gathered that day from his brain MRI, there is still part that will always be a mystery.
I'm not sure how long that meeting with the neurologists lasted, but we concluded by making arrangements to consult later in the day with the Director of Infantile Spasms and a few others about how we would proceed. Soon they were filing out just as they filed in. Dr. A was the last to leave. Our nurse for the day remained at the head of the bed near the monitors where she had been the whole time. The three doctors got maybe 6 steps down the hallway...
What happened next can only be described as…well...I don't know how to properly label it. But, in hindsight, it is clear that this is the point where God absolutely stepped in and said, "Ok my beloved, sweet and weary children…I'll take it from here."