Thursday, September 16, 2010

Week from Hell (with pics)

It's one thing to sit down to write that we are frustrated because nothing has changed. It is quite another to write about things getting worse. Unfortunately I am doing the latter.

I don't even know where to begin - so many things going wrong....

First off, Brandon is still in the hospital. Since August 2nd, we have been waiting to get him home. He has not seen the kids since then and there is still no end in sight.

The doctors had managed to get the shingles under control, but the nerve pain it caused was so bad that pain management became the major priority. A Pain Team was assigned to Brandon to experiment with different medicinal cocktails so that he will feel more comfortable. They did succeed in managing the constant discomfort, but they were not able to impact the episodes of shooting spasms through his body...episodes that leave Brandon screaming in pain. The nerve endings are so sensitive, that a light touch can turn into agony - think of a small spark igniting an oil tanker.

With the introduction of all this medication came other side effects. In the last 2 weeks Brandon has become completely incoherent. There are glimpses of lucidity, but all in all he has mentally 'lost it'. He has hallucinations of things going on around him, he has conversations about things that don't exist, he responds to people that are not there, and he mumbles things under his breath.

As part of this, he also gets paranoid and angry. For example, he yelled at me yesterday because "Don't you hear Koby asking you to take him outside? Get up and take him! Why don't you take him? Get up already!!"

For all those who know Brandon, you know that he does not yell, and he is usually quite logical.

This has been the hardest for me. Before, at least I could talk to him and we could have conversations about what is going on with him and the kids. Now there is nobody to talk to because he does not even know where he is.

It was so bad the other day that the Dr's became concerned that it was more than medication. There was a danger that the shingles virus had spread to his spine and brain. So they performed a spinal tap and extracted fluid to be tested. Thank G-d it came back negative for infection!
Yet he is still not lucid. And that is scary on many fronts. By not understanding where he is, he is not fighting. When he does not hallucinate he sleeps...and the days go by.

Another new occurrence is fainting spells. Brandon has been passing out every time he sits up or stands up. 2 days ago he passed out 4 times. The first time he landed on the floor and hit his head - off to CT scan to check for damage...none was found. He did however land on his foot and it is so swollen that the Drs suspect a fracture - we are waiting for results. If he did not have strength to stand before, now there is no way.

And today we were hit with another bomb - the shingles are back! Not the old ones, but a brand new batch. So back to isolation we go...because that's all we needed!

I honestly don't know how much more he can take. He is so frail...how can he fight? I don't know.

I am posting pictures of Brandon - not for shock value, but because it is important to show how devastating this disease can be...even to a young, healthy athlete. This body has no resemblance to Brandon...it is a 'sick' body...and it is destroying my Brandon! So my priority is to get his mind back so he can fight to get back what is rightfully his...and get back home to his life.