Thursday, September 30, 2010

A Tough Day (with pics)

We arrived at the hospital this morning and went to see Brandon with his doctors (not the kids). They asked him to stick out his tongue...no response....no comprehension of what they wanted, just a bland stare back at the Dr. Then the Dr stuck out his tongue and Brandon could copy him. They asked him to move his right leg - no movement. Move his left leg - nothing. He could not speak, and when he did he just repeated the same word over and over. I had to leave the room.
Then we met with the Drs - no change - still has liver and kidney issues, not sure what is going on with his brain but suspect the virus is still there. Brandon's brother asked the tough questions - we heard the tough answers. FUCK! Timeline? No idea. FUCK!

Now it was time to take in the kids (who were waiting downstairs with my parents). Brandon's amazing nurse Liann got them special robes, blew up the rubber gloves like balloons (and colored them like bunny rabbits), and gave Dana a pink stethoscope (huge hit). So now, dressed as "doctors", they were ready to go see daddy.

Wow - what a beautiful scene - Brandon gave a huge smile when he saw them. We put the kids on the bed - Koby jumped straight into his arms and would not let go. Dana, a bit more timid, laid back but slowly cuddled up to daddy and touched his new soft hair. And Brandon hugged them, and kissed them, and squeezed them. And though he could not talk, his eyes glowed with love.

And I was smiling.
And I was miserable...heartbroken.
The thought creeps in - could these be the last moments? Are these the last pictures?

If g-d was watching he would know that Brandon belongs with us and needs to get back home to the kids. They need him and I need him. We are meant to be together as a family!

The rest of the day was tough. Brandon was not responsive and could not really speak, It's also tough to tell if he hears you because the eyes just stare ahead, no sign of comprehension. And there are moments when he gets so agitated and he tries to get out of the bed...which he can't.

At the end of the day he sat up and I helped him. He leaned towards me, put his arm around my shoulder and gave me a couple of sweet kisses. He looked at me and smiled. And I smiled back and told him I love him so much.

This fairytale story needs a happy ending. It's time for the good witch to appear and save the day. And allow the prince to return home.

PLEASE PLEASE PLEASE!!!!!!!!!!!!!!!
It needs to happen, it just has to!






Wednesday, September 29, 2010

The wrong words

Drs pulled us into a meeting today:

"If there is anyone that needs to see Brandon then they probably should come soon. Bring the kids tomorrow."

And what the fuck am I supposed to tell my 2-year old and 4 year-old? What the fuck am I supposed to say?

Tuesday, September 28, 2010

No words

I am at the point of zero patience so this will be a very straight forward and emotionless update - that's all I can handle right now...

  • Liver complications (from feeding tube that they had to stop)
  • Kidney complications (from antivirals)
  • Delirious - suspect either shingles (for the 3rd time) or infection in his brain
  • Sleeps all the time
  • When awake has no idea what is going on
  • Shits and pees himself in the bed and not even aware of it
  • Can't speak properly
  • Repeats answers (they assume due to the brain issues)
  • Can hardly move (not even to lift his own arm)
  • Trouble remembering the kids' names
  • Says kids are 18 and 17

All Dr's keep repeating is "he is very sick"

Scared shitless!

Tuesday, September 21, 2010

And now a slap to the other cheek

Further tests have shown that the virus has spread to his brain.

This explains the delirium.
This scares me to death!

On a double dose of anti-viral medication that they hope will destroy the shingles.

What can I say??

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.




Wednesday, September 15, 2010

Brandon's Hebrew Name for Prayers

Friends have been asking for Hebrew names so that they can pray for Brandon at synagogue this week.

His Hebrew name is: Yechezkel Chaim
Mom's Hebrew name: Azeeza

We need as many as we can get.
Thank you

Thursday, September 9, 2010

Rosh Hashana

Today is Rosh Hashana, the Jewish New Year.

Like many holidays, it is rich with tradition and symbolism. For example:
  • Meals often include apples and honey - to symbolize a sweet new year
  • Round Challah is served - to symbolize the continuation of life
  • A shofar (ram's horn) is blown to "awaken and remind people to reflect on their lives"

Jewish tradition teaches that during the High Holy Days (Rosh Hashana and Yom Kippur) G-d decides who will live and who will die in the coming year. As a result, during this time, Jews examine their lives and repent for any wrongs they have committed in the previous year. We are encouraged to make amends and plan for improving ourselves in the next year. In this way, Rosh Hashana is all about striving to be a better person.

The traditional greeting for Rosh Hashana is "Shana Tovah" - happy new year. The more complete greeting includes "may you be inscribed and sealed for a good year".

I sat in synagogue this morning without Brandon and listened to the prayer asking to be inscribed for a good year. And I was filled with rage. Rage that Brandon, who is so kind and good and giving, who has a heart of gold, is lying in pain in a hospital instead of celebrating with us. Rage that families are sitting here taking life for granted. Rage that this merciful g-d that we are praying to dares (yes, I actually thought "dares") to put Brandon through this. I know this is not the spirit of the holiday, and part of me hates that I felt this way, but here is the truth.

If G-d truly is making these decisions in the next 10 days, then Brandon should be healthy and home quickly. Because that is the right thing, because that would be just, because the current state is not fair according to any scripture you read.

So I am having a hard time getting into the 'spirit' of the holiday. I hope g-d understands, I hope g-d hears us, and I hope that this year will truly be "Shana Tovah".

Sunday, September 5, 2010

Nothing New

Well we've passed the one month mark and still nothing new to report.

Still in hospital, still in pain, still high on meds, still not home.