Sunday, October 2, 2011

Today I hurt...

Joe's been diagnosed with an anoxic brain injury. At some point, somehow, he was deprived of oxygen long enough to cause permanent brain damage. He's getting a stomach tube put in tomorrow and then off to a top rated rehab unit for several months to see if there is any progress.

one dr said to me yesterday that this is a tragedy. No kidding. Joe;s health was awful, he was on borrowed time... but its not supposed to be like this. Its not supposed to be a brain trauma from lack of oxygen when he was IN SURGERY and under the care of an anesthesiologist!!!

I don't understand any of this. I can barely sit next to him for more then a few hours, and I'm really hoping that his family understands that I can't put JP thru anymore of the hospitalizations.. especially when he's like this. His movements are unpredictable and forceful... and just sounds come out of him. Its NOT Joe... I don't know if he;s even there anymore at all... or if he;s locked in this version of hell where he cant see or talk.

I didn't go to the hospital today and I have such guilt. But my mom was exhausted and has pushed herself to do what she can for me. I just can't bear to take JP to see Joe like this. He was scared in November when he went to see him in CCU and Joe was alert and talking. Now Daddy can't talk or even see him. I don't even know if he knows who i am or who JP is. IN addition JP was coughing and sneezing up until about 4 pm and I can't risk another fever with Joe delaying the tube. If he has ANY chance at all it will be with this rehab hospital.

I'm terrified of the surgery to put the stomach tube in becuase they have to sedate him again.. and thats how we ended up here. The hospital he;s going to is over an hour away from me... i won't get there anytime except the weekends...

I can't figure out if I'm coping well or in total denial. I feel like I emotionally skirt around the really painful parts and avoid letting myself feel the pain. I'm starting to see people treat me differently already. Some people that are casual friends... are conveniently leaving me off of group invite texts.. and that makes it even harder.

I feel like I'm stuck in limbo. I can't say I'm a widow yet... but realistically I have to think that way. Joe;s family doesn't include me in any discussions so I'm alone there as well. JP hasn't asked once to speak to Daddy.. and I asked him today if he wanted to see him and he said no. He's only 4 so I don't know what to do . Since kids are more in touch with things we adults pretend don't exist, I wonder if he knows something we don't. He said to me one day that Daddy was gone.. does he know that in a way he is? If Joe's not going to ever get better then he is right now.. then I hope he isn't aware of anything other then impulses and instincts. The doctors feel that its likely he's not aware since he won't do anything basic on command and since he's not paralyzed he should be able to.

All I know is that my heart is breaking tongiht and it hurts so bad.  I look at JP and I hurt so bad for him as well. Its just not fair!!


Oh Mighty Daughter In Law said...

I know that a lot of the girls from the boards want to reach out to you but don't know how.

So here I am, letting you know that we are all here for you and listening.

I don't know if you know that Tim was diagnosed with MS in 2009 and I'm on my way to spinal surgery soon. Tim has had to be admitted to hospital twice now for MS attacks and I wanted to say that I fully understand not wanting to take JP in to the hospital. And I fully understand not wanting to put more pressure on the people that are already doing so much to help you out.

So. I know we've had our differences. But here I say that if you need us. We are here. Because I know full well what it's like to be alone *in the mind* when the shit hits the fan. And the girls have been there all the way through.

I don't know if any have sent you emails. And I no longer have it because the computer has been reformatted since last we spoke. But please feel free to reach out to us, even if it's over at the BF forums.


Oh Mighty Daughter In Law said...

Boo as in bafyfit. I didn't know it was going to bring up my bitch about my mother in law blog.