Our New Normal

So as you probably gathered from my last post, today was quite a milestone day in moving from "critical care patient" to "regular neuro patient." Removing the EVD and allowing nutrition by mouth makes a huge difference in the hourly patient protocol. Jon is still in the ICU side, but only because they haven't finalized logistics of the move. So I went home for an hour to sort through bills in preparation for going to the bank tomorrow morning, leaving Jon snoozing away and snoring up a storm. When I came back to the hospital, he was wide awake and greeted me with an enthusiastic "Hi!" I asked how he was, and he said "I'm good, how are you?" Because he was so alert, and the hospital had arranged a tray of "clear diet," I asked him if he wanted to eat something. He said okay. So I set up the tray, and uncovered the soup (looked like it was pumpkin) and handed him the soup spoon. The distance between the soup bowl sitting on th...

The brain is a mystery and a marvel. When I'm in my clearer moments of being (my normal cycle is calm/productive, then exhausted, in between there are still crying jags and feeling despair/guilt/anxiety, but mostly that's limited to when I'm alone in the car. By the way, this has always been my escape pod. My memoir could be titled "Crying in my car: One Woman's Relationship with her Car") I turn over the facts of the clinical case in my mind, over and over. So yesterday, our darling niece was planning to come by for a visit. So I let Jon know before Alex and I left in the late afternoon. He rolled his eyes and went "humph." Our darling girl is a sweetheart and we love her tremendously, but she is 1) a youngster and 2) an Angeleno, which means plans change and traffic can dictate anyone's whole day. So he expressed his usual skepticism that she would be on time, or arrive at all. When I came back in the evening with Casey, Casey asked "H...

Today was a pretty big day; Jon had a CT scan that came back clean, so they removed the EVD from his head. Such a big relief, as this means he is on his way to the regular section of the neuro floor, and out of ICU. Next I'm hoping that the speech therapist clears him for some jello and other soft foods by mouth, so we can work toward getting the feeding tube out. One step at a time, I suppose. Physically, he's still strong as an ox, and as most of you know, my husband is not a small person. So for a while he had his hands restrained to stop him from pulling out his IV, feeding tube, and the port line running from the top of his head. He wasn't doing it in any aggressive way, more the way we unconsciously scratch at bug bites when we're asleep, or rub our eyes. So by the time I arrived this morning, in addition to the restraints, he also had soft white padded hand wraps on both hands, like baby boxing gloves. That's you, honey, a fighter, sturdy as a water buffa...

1. Jon's blood pressure, the EVD and his cranial pressure, and his feeding tube (when he can come off it.) especially the feeding tube. That totally blows having it in, since he has chewing and swallowing down just fine. 2. Corey's AP Chem test on Monday. He seems pretty cool and confident about it, and seriously seems to have his act together on several fronts. I would be a hot mess in his shoes, but he's brighter than me, fortunately. 3. All the rigamarole I'll have to sort through on the accounts that I don't have logins for--utilities, personal cards, car insurance, etc.--I wonder if companies run into this situation often? My guess is yes. We probably aren't the only couple in America that divides up responsibilities and doesn't sit down to exchange passwords and account information. Luckily we have each other's phone lock codes, otherwise I'd really be screwed. Off to the bank on Monday to get some things in motion. 4. Casey's newfoun...

Hello Friends and Family, First of all, thank you thank you thank you for all your words of support, your prayers, gifts of good thoughts, positivity, and well wishes. It all helps, believe me! We are truly grateful and feel blessed to have the absolute best network of wonderful human beings--HUGS! I'm using this blog to update folks on, well, pretty much everything that comes across my mind, so feel free to check in if you're wondering what's going on. I write things down because I'm making lists, lists, lists constantly, and also because writing helps me figure out whether I'm coming of going from one minute to the next. I'm processing things through language. My heart is cracked wide open and everything is spilling out through my words, as Jon is working really hard to find his again. So some logistical things first. Just want to tell you what to expect if you are up to a visit to the ICU to see Jon, so you don't run into any surprises. He is in K...

Where to begin? Well it began at the beginning of the week, but I can't think about that right now. I want to write everything down, I don't want to forget a thing, because every minute of the day I'm thinking about the day you come back to me, come back to us. You're still you, even when you can;t remember what that means, and I see you're searching, searching for the right words and the right memories that fit what you're seeing, what you're hearing. You'll be back, and I want you to know how hard you've worked every day to find your way back. To me. To us. We're going to be better than ever. Today Roger Ho visited you early in the day, and he hadn't seen you since you were in the ER. You greeted him with a "Hi Roger," and told your nurse, Bea, "That's my brother." She quizzed you about what your name is, and you replied "Jon." Roger chatted away like any regular day, and you nodded and made the usual...