MRI Results & Decisions

We met with our neurologist yesterday to review Macayla’s MRI from the 8th. There is a significant amount of atrophy in the brain compared to the last MRI in June. The atrophy is throughout the brain in all areas with the exception of the temporal lobes. These have some atrophy, but not nearly the amount as other parts of the brain. This is the area associated with memory and what a blessing that this area has held up so well. Her memory is still good and she still recognizes everyone and can even anticipate the next scene in a movie because she has memorized it. Hopefully, this will last much longer so that she will be more comfortable as her sight is lost. It will be more comforting for her if she can remember our voices and where she is and even be able to envision the scene in a movie from memory as she hears it even if she can’t see it. Her vision has been more of a concern lately and the MRI definitely shows thinning in the occipital lobe (back of the head) where the visual cortex is located. This may be why she is having some vision loss and inconsistency in sight. This is the stage that seems to be moving so quickly. Our doctor stated that this will seem to move quickly because we can outwardly measure her deterioration by the skills and abilities that disappear. Later, she will reach a vegetative state and things will seem to slow down. The brain stem will most likely deteriorate slower because it is more resilient than the rest of the brain and this will help maintain some of the more basic functions.
All of this past week, we have been challenged to think more and more about end-of-life decisions. Battens disease destroys the brain and as that happens there will come a point when the brain will no longer be able to keep a major system of the body going. At some point the brain may stop telling the lungs to empty fluid or the kidneys to function or the liver to do its job. The loss of a major system would be fatal. At present time, medical technology can augment some of these systems. If the lungs can’t function, then a person can be intubated and the lungs can be sustained by machine. However, with Battens the question becomes, “How many bodily systems do we sustain before we accept that the disease has killed her?” Macayla’s disease is fatal and it will shut down a major system in her body at some point. We are exploring the legal, ethical and medical aspects of Macayla’s future and we encourage anyone who is responsible for or caring for someone with a potentially deadly condition to consider the same. It is better to try to settle that up front as much as possible. Each situation will have to be considered as it comes, but we hope to have a general direction and decision made that will guide us through those moments. It is hard to always know what you will do until you get into a situation, but I hope by thinking about it now, we will be better prepared. Our honest prayer is that Macayla will either be completely healed in this life, or that she will be able to peacefully pass into the next life without discomfort. Either way, Jesus has her in His hands.