Search This Blog

Friday, April 29, 2011

week 1 --an overview

We brought Danielle back home on April 15th. So technically as I type this, it is week 2 ending. But I will get there. Remember, I told you I should have started this a few weeks ago....

Like I said, she came home on the 15th, that was a Friday night. There was a ton of here that night. Myself, my husband (well he came home from work a little later), our 2 kids, my mom, dad, step-mom, 2 little brothers and a girlfriend. We had pizza that night....that was the first "taste" of what we were in for. Because of the high dose of steroids that she takes to keep the swelling of her brain down, her appetite is that of an NFL player. She ate 5 or 6 pieces of pizza and several bread sticks!
My mom came home with news that she had gotten promoted to a higher position and a change of location at work. In theory that was great news! But not that day. Added hours and stress was not what the dr ordered. Literally! We spent that night still in shock of all that was happening. Sunday, was a "normal" day.
Monday, began a crazy and stressful week......
Danielle's wonderful case worker called Hospice for us and set up an informational meeting. That was really great, learning what this great program was going to do for us and Danielle. Then came word that my mother's family was putting together a celebration for Easter for the upcoming weekend! How awesome that was, what a great way for Danielle to see her family and for them to see her. Except it took a terrible turn. No one thought to include us in the planning for the occasion. So it was planned for a time in which both my mom and one of my brothers where at work. But more importantly, the time of day when Danielle sleeps! uh-oh.
I thought I was polite when I explained this. But apparently not, this then caused a war of words in my family. Looking back in hindsight (which we all know is 20/20), maybe people didn't understand that I am the one who cares for Danielle, about 80% of the time. Either way, things were blown WAAAAAAY out of proportion.
Then there was me getting bent out of shape because someone tried (agian, my poor family) to tell me they understood how bad Danielle was. Uh, HELLO, pregnant mom of 2 who is now, basically taking care of a 5'2, 200lbs 2.5yr old. NO, YOU HAVE NO FREAKING CLUE. Yes, hormones I know.
Days, were both bad-sleeping for 23 out of 24 hours, literally. And good--being awake all day on Saturday and enjoying the family and even an Easter egg hunt!
But before that, Hospice came to the house to admit Danielle to the program! The lady calls in the morning to set the time at 4, (dinner is set for 5-6) ok we will make it work. She calls around 230 to tell me she is now running about an hour late and won't be there till 5. Uh, ok, gotta do this ya know. Then she doesn't freaking show up till 545! this time no call!!! Then she doesn't seem to know her head from a hole in the ground--this is not going well.

Tuesday, April 26, 2011

livivng life

This is something I really should have started just over a week ago. The day we got told 4-6weeks to live for my 26 year old sister. Ya know, then I could have told a story about the ominous way it was said, and how the whole floor of the hospital became silent and the only thing you could hear was the ticking of the clock, but really that would be bull. None of that happened.
But here is a brief run down of how did happen and all that went one for the following days....

It was a Friday, when the doctor was finally not too busy to talk to us and tell us just what was going on. Friday, as in 3 full days since we went to the ER, with her throwing up and slurring her words, and unable to walk unassisted. During those 3 days she spent the entire time in a bed sleeping, and sleeping and then sleeping some more. When he told us that the tumor (the 2nd principle tumor) a glioblastomia, was back after just 4weeks after he removed it, we wanted to schedule another surgery right way. That would have made brain surgery number 5. Yup, you read that right FIVE!

Once, Danielle made the decision to not have surgery and we agreed. We were done with the neuro "god", or maybe he was done with us....we have no heard from him since. We left the hospital with Danielle, a few hours later. That was the day that my life changed from "living life" to "surviving death".