To The Max

Recently our thoughts and feelings have been thrown for another loop. I think that is becoming more of the norm, then the exception! The following paragraph highlights something that has come up in recent conversations with friends. Something about trying to be in each others shoes, or trying to understand what our situation feels like. Well here is the only way I know how to share that, and I am going to use the events from the past week as an example:

First let me tell you about hope. This is a hope that isn't recommend for the faint of heart. If you are in any way suffering from naive delusions of happily ever after, then this hope isn't for you. If you want a hope that is a clear distinction between very bad, and very good, then it's not for you. If you expect miracles from this hope, then it isn't for you. This is a hope that is so slight, so thin, so painful, it doesn't seem like a hope at all. It doesn't offer comfort, it doesn't offer answers. You don't know whether you really want to have this hope after all, or whether life is simpler without it. When you first thought about it, you didn't know whether to smile or cry. Which is probably why on most days you cry when you laugh. You don't know who to believe or what to think anymore. You don't know what to say in conversations and feel awkward among friends, but yet you still hope. You hope that perhaps tomorrow will be easier, the next breath a little lighter, your shoulders a little straighter. Sometimes it helps to think that nothing matters, nothing except the task of the moment, whether it be changing a diaper or feeding the cat. A couple days ago, when you found an article that raised up all those issues you thought you had put to rest. It all came back in a torrent. The faces of the people in the hospital; their words, your thoughts; your pain. Perhaps this is a hope that will never manifest, never be clearly defined, never be truly attained. But now it's here, and suddenly you realize that it always was. A lone rock standing against the crashing waves. You know that this rock can never hold back the ocean, but somehow that doesn't matter, as long as you hold steadfast.

Here is an excerpt from the article : To define better the syndromes of hydranencephaly and maximal hydrocephalus, we followed 10 neonates demonstrating (by computerized tomography) virtual absence of the cerebral substance with serial computerized tomographic (CT) scans, electroencephalograms (EEGs), and developmental evaluations. The follow-up period ranged from 4 to 23 months. Two well-defined syndromes emerged. Five patients showed absence of cortical activity on EEG and a CT picture of minimal occipital brain parenchyma connected by a thin bridge of tissue to intact basal ganglia. These patients were shunted and showed no improvement with time, either neurologically or radiologically. Five patients showed minimal frontal cerebral mantle on CT and the presence of electrical activity on EEG. These patients required bilateral shunts to control head size and showed remarkable progress with time. Serial CT scans demonstrated the appearance of considerable brain substance, and neurological development was either normal or slightly delayed. We believe that the former pattern of only minimal occipital brain and absent EEG activity defines true hydranencephaly, whereas the presence of small amounts of frontal brain tissue associated with EEG activity seems to represent maximal hydrocephalus. The differences in CT pattern, EEG, and clinical progress all suggest a different pathophysiology for these two conditions. (Neurosurgery, 6:35-38, 1980)

Is this a hope that can be applied to our guy? Everyone who sees him is amazed at his behavior. How aware he is of his environment and how social and animated he is. How he is meeting most of his milestones. Could it be that his diagnosis, in actuality, is not hydran? And does he instead fit into this diagnosis of maximal hydrocephalus?  This changes everything! The first and foremost being that the latter does not necessarily have the same death sentence as the former. We do not have any official/medical support for this idea right now, but certain things have led us down this path. His EEG was interesting enough that the neurologist has asked for an MRI sooner, and even told Leo's PCP that perhaps, in his words,"there is more brain matter then previously thought."  This all brings us back to the word hope. And perhaps another good word is anger. If this is all true (hope) then why did they keep shoving the terminal vegetative state crap down our throats every opportunity? (anger) It is easy to get lost in all the emotions, so we have to go back to the base. The foundation of everything. And stand on it. Strong and steadfast.