the brain, it is a'changin

I've started this over and over in my head, reaching for my computer and then getting pulled away by Jamie's needs or my emotions.

Yesterday was both unexpectedly good and then, overwhelmingly bad. This time the roller coaster ride knocked me for a loop. The reality of this is just starting to really take hold. And my BFF, Denial, is slipping away. I think I like denial better. My makeup (I wear so much) doesn't smear and/or I don't have to hide behind the many monitors when talking to him to keep him from seeing the terror in my eyes.

The good news is: He really seems to be getting better. His pain is changing. As the bleed moves down & leaves his brain forever (I'm making that up, but please God let it be true), it passes through (and settles for awhile, they say) in his neck. The back follows. His wonderful Intensivist, Dr. Huseby, (never even heard of one of those, but we all should live next door to one and I dibs Dr. Huseby) said this morning: Has it hit your low back yet, Jamie? 

WAIT, low back?! I thought just general back (like that even exists, Sally Swenson, LMP -- it's the denial thing, I know). One day in the neck, one in the back and we're out of here, right? Not the reality though. Okay, I get it. Here's my version: It's traveling down & ultimately out of the spine and infuriating the healthy spine dwellers along the way. It has to travel all the way down to the sacrum, at the base of his spine. Since last night, the pain has settled heavily in his neck which feels stiff and he can't turn his head much. Still lots of pressure he says, within his brain. It's all normal and he could not have better results from every diagnostic test they've given him. We are very lucky in that regard!

Enough about the beautiful, amazing brain that I not so secretly love/hate with equal passion and fury. Yesterday was surprisingly good. About 1:00, I realized that he had not had a dose of his beloved BFF Morphine since 6 AM! That was HUGE!!! He had been requesting and getting it every 2 hours. I was so elated and my mood changed instantly to one of real optimism that he really MIGHT not always be flat on his back hooked up to monitors writhing in pain and discomfort in a darkened quiet room with a cold towel on his head with me by his side fighting back tears. (I know the editor in this hospital room would fight me on that run on sentence, but that's very much how I feel, and I'm sticking with it, fine sir.) 

With my optimism came Jamie's as well. He started talking of eating more & even ordered his own food for the first time. So many of his friends have wanted to come see him and he's really starting to want/need those interactions & relationships -- to feel alive again and not just in the scary healing limbo place with his parents! Four darling people came in pairs back to back and he loved their visits. But it took it's toll on him. He had to order Morphine, he developed a fever for the first time this week, and the docs became concerned about the sounds of his lungs... and then I promptly fell apart. He did not know it, but when I said I was staying the night (hadn't stayed the two nights before), he was openly relieved.

He had a pretty good night and is better today -- no fever. But visitors, dear visitors, text me or him first and we'll see what he's up for. He'll be yours again soon, but for now his dad and brother and I have to hold him tight and protect his amazing brain and heart and soul and let it all focus on healing.

He'll stay in room 255C (Intermediate Care) through Monday when he'll get his second and hopefully final angiogram to determine if there is an aneurism hiding in there. At that point, we do not know where he will go. If there is nothing there (which is what they're anticipating), he may go "upstairs" for a day or so, and then home to our house to slowly recover and begin to feel alive again. It's going to take a while... a week, two? A month? Don't know.

Thanks for everything and every one of your comments and notes!  We're cherishing them all.
Love Sally & Gary & Sam

Email: sallyswenson@gmail.com   Cell: 42-770-5235