Tomorrow morning we travel to Boston for Buster's annual MRI, as a follow up to his 2018 brain surgery. Although an MRI is nothing "serious," every scan is crucial. A year after Buster's surgery, we flew back to Boston for a cerebral angiogram so that his neurosurgeon could determine whether his cerebral artery bypass was successful, which it was. In 2020, COVID kept us from completing the scan in Boston, so we opted to do it locally. Although that MRI itself was easy, we received terrifying news a few days later from Buster's local neurologist. He set up a phone appointment with us and quickly got to the point: Buster's 2018 surgery, which essentially "fixed" the lack of blood flow to the right side of his brain, was failing. His cerebral artery was closing, and this time a stroke would be catastrophic. He told us we needed to alert his neurosurgeon immediately. It was almost 5pm on a Friday and I didn't think anyone would answer the phone in Boston, and I fell, again, into the panic of trying to save Buster's life. I thought that horrifying time was over, and here we were, again, hanging onto a cliff. I remained calm on the phone call with the neurologist; I just kept repeating "Okay...okay...okay..." and he kept repeating, "I'm sorry...I'm sorry...I'm sorry."
As I detailed in a previous post, there have been many miracles along our way, and after that phone call we received another small one---the office manager for Buster's neurosurgeon at Boston Children's Hospital answered the phone late that Friday afternoon. She and I had communicated so many times over the two years Buster had been a patient, and she even came to meet us at the hospital after his surgery, after only having interacted with me over the phone. She was like a friend at that point and when she answered I couldn't hold in my calmness any longer. I wept when I told her who I was, and tried to explain to her what the local neurologist had told me, that Buster's surgery was failing and that he could have a stroke at any minute. Luckily, B had already uploaded Buster's MRI scans to Boston Children's system, so that the neurosurgeon could review them the following week. The office manager immediately patched in the neurosurgical nurse and informed her of our conversation, came back to me and told me not to worry, that Buster's images would be reviewed as soon as possible and expect to hear from someone on Monday.
That weekend, waiting to hear from the neurosurgical team, was almost as awful as first learning about Buster's Moyamoya diagnosis two years prior. B and I couldn't worry outwardly, couldn't cry or yell in anguish because we have three children who would have been terrified. We also couldn't brush our feelings away and act like no bad news had been broken. I sobbed everywhere I could, away from the kids: the shower (quietly), the car (loudly), on the phone (to my mother). I found myself, again, begging God for a big miracle. I pleaded with Him to make the neurologist's interpretation of the scans incorrect. I told him and the Virgin Mary that I would do anything, ANYTHING, to make this go away. I prayed and prayed and prayed.
On Sunday, we received an email from Buster's neurosurgeon, with the miracle we needed. Although the neurologist's reading of the scans was accurate, the neurosurgeon corrected his "mistakes." Yes, Buster's carotid artery was closing, but that was what he expected and it was the reason for his 2018 surgery---to provide an alternative route for blood to flow to that side of Buster's brain. He informed us that the artery would eventually completely close, but because of his surgery, it will not affect him. This is the "fix" that Moyamoya patients require; it is not a "cure" because the arteries do in fact close and there is no way to prevent that part. But there is a way to ensure blood gets to the brain, and that was what the surgical procedure (called Pial Synangiosis) was intended to do. As the neurosurgeon told us during our initial consultation with him in 2018, "The brain doesn't care how the blood gets there, it just cares that it gets there in the first place."
After the emotional trauma of that weekend, B and I vowed to only do MRIs or other kinds of testing for Buster in Boston. It is worth every penny, every logistical coordination, every inconvenience, to get his tests completed AT his surgical location, WITH his neurosurgical team. We get his results within hours as opposed to days, and we have experts watching over him. Whenever I tell people this story, they are furious at the local neurologist. They ask, "Did you TELL him he was wrong? What did he have to say for himself? Aren't you angry with him?" I did tell him the neurosurgeon's response, and in fact he was copied on the email that explained the proper scan reading. He responded to me separately and apologized "for the scare" and said, "This is why Buster has a team of specialists." And really, he's right. This is what I fought for after Buster's Moyamoya diagnosis: access to the best of the best. Careful brain imaging, with accurate interpretations. Peace of mind.
I have been so busy the last few weeks but it's finally hitting me that this appointment is looming. I can be naive about many things, and I can definitely be that way about Buster's health. I don't know if it is because I believe only good will come out of his visits, or because I am in denial about the severity of his disease, but I don't usually feel nervous before his MRIs. For right now, I am choosing to believe that it is because it will be an easy scan with no major concerns from his neurosurgeon. But I still have this whisper in the back of my mind because it has always been like this. Even when we rushed him to the emergency room for his first ever MRI, when his strokes were discovered, it didn't occur to me that something horrible could have happened to him. And the next moment his diagnosis smacked me in the face and erased my naivete. How could I have been so stupid, to think that all would end well? I am in this middle, gray area, where I want to have hope for positive scans, but I also want to be prepared for the worst. I don't know how to be in both emotional pools without drowning in one. What I do know is that it is my job to be calm, positive, and comforting for Buster. I will swallow the threat of tears and emotional demolition so that he doesn't have to weather his own feelings in addition to mine.
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