Monday, September 27, 2010

Bad News, Calling out Arvil's Angels

Written by Gavin White   9/27/10
    I haven't written in Arvil's blog in quite some time. I suppose that is because I have not felt like there has been much to say. The last several months have been relatively uneventful. Arvil has been making progress. He has been learning to use his body little by little. He has some use of his hands and can move around a little on the floor. He is excited for life and pays attention to what we say, he is learning to communicate, though it is very simple communication, a few words and gestures, but he communicates. He seems to understand most of what goes on around him. In short, I have been very optimistic about Arvil's progress. This last week, however, I was given new cause for worry.

Last Tuesday we made a visit to Primary Children's Medical Center for an MRI and a visit with the stroke specialist. The day was something of an ordeal. It began with an EEG which Arvil was way too wiggly for. He did not like having electrodes glued to his scalp. Next, we waited for a couple hours to get bloodwork results before the hospital would sedate him for his MRI. this wait wasn't too bad, because Arvil finally fell asleep.

The bad news came when the MRI was complete. The Neuro-Radiologist explained the images and my heart sank. Arvil's brain was not healthy when he had his last MRI, but we have put off having another for nearly eighteen months. Things have gotten much worse, "progressed" in the medical jargon, but I personally cannot use that word in the place of "worsened."

It would be nice to have some imaging from after the stroke last June, but we never had it done, we wanted to do it at the first of the year, but it did not happen then either, so we don't know what damage existed after that major stroke, or what changes happened in between, but we do know that the health of his brain has worsened and that he has continued to lose vasculature and blood flow to many portions of his brain. The most troubling part of all of this is that PCMC is supposed to have all these amazing specialists in Neurology, but nobody seems to know anything about what is going on in my son's head. It is new territory.

Here is the long and short of it. If your brain, a healthy brain, is a grape, Arvil's is a raisin. because it has been gradually losing blood vessels, the tissue has shrunken and atrophied. Two doctors told me that if they had just seen the imaging and been asked to tell you what the child with that brain was like, they would say that he was probably unaware of his surroundings and unable to communicate, play, or possibly even eat by mouth. This is obviously not Arvil's case, which is encouraging, but gives an idea how sever the brain damage is.

We still have no idea why the brain is closing off blood vessels, nor why both of the main hemispheres of the brain are involved, but the brain stem, cerebellum, and spinal cord look perfectly normal. There are still theories about autoimmune disorders, or some sort of viral infection, but nothing has been proven. There may be recommendations for biopsy of brain or venous tissue, or possibly some sort of brain surgery, but we don't know yet what to operate on.

This is a very frustrating thing for us as Arvil's parents. I did not receive this news well. I think part of my difficulty in receiving this news was my optimism about Arvil's health. Callie did better, she knew something was wrong. He has been having very small seizures quite frequently, and is sometimes uncomfortable. Just this Saturday, he started crying in pain, and when I asked him what hurt, he patted his head and whimpered. He then had a little, but by far the most major I have seen in over a year, seizure. He then relaxed and fell asleep in my arms. We have reason to worry. I am terrified at the thought of watching my happy little boy fade away as his brain slowly dies.

I am calling out Arvil's Angels again. Please pray for Arvil. Please pray for the doctors, that they will be guided to answers. Please pray that if there are other solutions, through alternative medicine, or nutrition, or anything else, that we will find it. I love my son . Thank you for your love and support.