Today, I spent a couple hours doing some research about the areas of Alex’s brain that were damaged or gone. I believe I gained a different, more clear perspective than what I had before. The explanations that we were given were vague and simplistic. This was all I could handle at that time. I have spent these last 21 months ruminating over all the details of Alex’s’ injuries and all her hospital journey entailed.
I was able to understand why the doctors told us she would never walk, talk or feed herself. She had a thirty percent chance of gaining minimal consciousness. This means that she may show some sign that she is in there, but not communicate. Even then, it would be vicarious. I remember the specific trauma team meeting when we got the results of the first MRI. Her trauma surgeon drew a diagram of the brain to help us understand what he was about to show us on the MRI. He explained that the dark spots were actually parts of the brain that were gone. He showed us her Reticular Activating System (RAS), which was severely damaged. It had little holes scattered throughout the RAS, which is so small,yet so crucial. The RAS is responsible for communicating with the frontal cortex to wake up, so any damage decreases a coma patients’ chances of regaining normal consciousness. With the amount of damage her RAS had, it was probable that she would never wake up.
The next section affected that he drew out was the midbrain. He said the section down the entire length of the middle was gone. I remember asking him what he meant by “gone”. He then said he meant it was dead, not coming back. That was when I finally understood that brain cells do not regenerate or heal. He explained that without those two very important parts of her brain, we were facing the reality that this may be as good as it was going to get.
That wasn’t all of the bad news though. Her Basal Ganglia was severely damaged as well. The simplest way for me to remember what that could mean is that people with Parkinson’s, Tourette’s and Huntingtons Disease have damage in the Basal Ganglia. Alex’s hands already had the appearance of damage. This was from the spasticity of the posturing, which is involuntary flexing, wringing and clenching of extremities. I was able to find a medication through my research that they had not tried for this. It had optimal results by administering the medication, Baclofen through a intrathecral pump. That was not possible, so they gave it to her in her Picc line. She didn’t do well with it, so she didn’t stay on it very long.
When we had a meeting with the first of three Neurologists, he told us she would never wake up, talk, walk, feed herself. I flipped..I asked him how sure he was. He said he was 99.9% sure he was right. I asked him about his credentials. The trauma nurse interrupted and told me I could go online and find that information. I got very upset with her. I stated that I felt it was completely reasonable for me to want to know where he went to medical school, did his residency and how many years he had been practicing medicine. After all, I said I wasn’t asking how many divorces he had been through. I was being asked to trust some doctor who was telling us that our daughter would never wake up. Alex’s trauma surgeon chuckled. I surprised myself, but I was advocating for Alex’s care, her life and her fate. Needless to say, we got two more Neurologists to meet with us to be sure.
The next two Neurologists were more humble and would not give us a percentage. In fact one of them had been my grandma’s doctor. They then joined the team of tweaking her meds to help with storming. They reintroduced Baclofen to her regimen. I say that because it made me wonder about them not being involved sooner. After all, I am the one who suggested adding Baclofen after reading about it. Her mother, not even in the health care industry. I believe her trauma doctor did not feel we would do well with knowing the truth any sooner than we got into Alex’s prognosis.
When my dad came the day after the accident, Alex’s trauma doctor, who was in charge of her case, showed us the second CT scan. He had tears in his eyes as he told us how sorry he was. I do not doubt he did everything in her best interest and tried to give her time to show us how much she was capable of improving before giving an MRI. When I asked him to get second and third opinions from other larger hospitals, he did. That is actually why we had a second MRI, as Doernbechers Children’s hospital requested it. So I know we were in good hands. All the other doctors he consulted with confirmed he was doing everything they would have done. I do believe Alex would have an MRI after about a month. I do not second guess his decision to wait.
I am finding a huge need to write about this. There is so much more I want to write about. So many experiences and details. I hope someday my writing will find itself to another mom like me, desperate for answers on how to save her child or loved one.