The night nurse told me he heard the day shift nurse being told by the neurologist/doc/whatever that there is seizure activity, and that not much else has changed.
Nobody’s coming to me to tell me, they just tell me to come back at the next visit.
They’re going to start dilantin, evidently.
Am I on a need to know basis? I don’t have the mental energy to force these people to inform me properly. Are they hiding from telling me that they’re done with her? Is she getting the rug treatment?
I came home, tucked the kids in, and told them everything’s OK.
I didn’t tell them that whatever God I’ve started praying to has seen fit to grant her more pain, us more pain. “Its for a greater purpose”.
Whatever. Whatever.
BJ, I’m so sorry. You don’t deserve this pain. I love you.
Well, I haven’t seen GAC since 1 today, and I miss her. She was going for her head CT as I was walking up at 3, and at 5:30 BJ’s Dad called to tell me that they had done the EEG, but not the CT. Haven’t heard anything since.
As with everything in this mess, I’m expecting it to be inconclusive. I mean, hell, every medical test they could come up with was inconclusive. She has an illness that doesn’t have the decency to tip its hat and identify itself, what else should I expect?
The boys and Mom (and me, about 60% at least) are watching Cars. It was the first movie that Pigpen ever saw in the theaters, we saw it while MastaG and BJ went to see the Pirates of the Carribean sequel. Its good, but I’d rather see it with her (of course).
Who knows? Maybe our shit luck has run out? Maybe they’ll be like “dude, she’s totally awake. We just had to tap her head and say ‘BJ, wakey wakey’”. I can’t say with any certainty that I’ve done that yet…
—
I’ve been thinking about her poor digits today. It didn’t occur to me until this afternoon that this will completely screw up her typing. I’ll need to get in good with some voice recognition software, can anybody recommend a package?
Also, in response to some of you in the comments, I don’t argue about the need for amputation. I tend to keep some of the more ugly details about her condition secret, but here you go:
The tissue is black. It is wasting away. The tips of her sweet little fingers, that I’ve bitten, and kissed, that would tickle my back, that would lace with my fingers, are dead. I have mourned that, and will again, but I don’t think there is hope of her coming out whole from this.
Still, as has been pointed out by people in the know, the world of prosthetics are amazing. She’ll get by. As are miracles, which I would sure love to see. In the daylight, when its sunny, its easy to believe they happen everyday. At night, I lose that faith a little.
I still have no doubt that she will awaken, and that she will be my girl. That faith is currently strong. The resolve to have strength until it happens is there, but I have moments of weakness when it slides away.
Anyway.
This was an update post. Thanks for the candles, guys, that was a fantastic idea. I love you all.
I love you, BJ. I love you, my poor, sweet, stricken angel. Come back to us soon.
Well, thats what I expect to clock as productive working paid hours today, so I’m thinkin the work from home route is sounding more and more feasible. Why do I think I can get more done at home than at the office? Because, thats why. Geez.
So, I went to the 10 o’clock show to see my baby, and Dr. Cross, the surgeon, had been in before. As you undoubtedly know, I’ve been kinda down lately, and it seems to be hard today and yesterday.
Anyway, Dr. Cross told the nurse they were looking to take off at least the three middle toes on the right and left feet, they want to remove part of the heel tissue on the left foot, they want to take off the first two or three fingers down to the second (big) knuckle, if not the whole darn thing, on her right hand. Body seems to be doing a bit better, BP was 120, which is damn near healthy, pulse is 112, she’s off all blood pressure meds (since Saturday, did I forget to mention that), her white blood count is still 33.5, but all things considered, her body is doing pretty well.
As is par for the comedy of errors, of course, the focus has shifted from her body to her mind. She’s going to have another head CT, as well as an EEG, to see whats happening.
I went in there really dwelling on those poor ol’ deviated eyes, and lifted the eyelids to see the pretty green (still green, folks. Evidently thats the coma color) eyes. They didn’t look deviated nearly as much, which I took for a good sign, until Selena explained that the eyes are showing bad ‘dolls eye’ movement, which I guess means she’s, I dunno, in trouble. Or something.
Hell, I can’t keep up anymore. Thats not the point, just another unfortunate piece of news in an otherwise sunny and light picture.
So, I talked with Dr. Mas. (always screw his last name up, so I truncate it. Sorry) for the first time since he told us that she might die on Friday (the day after I took her to the ER). He mentioned that it could be that because her liver and kidneys were giving trouble, they could very well still be processing the sedatives, which could be keeping her under. That’d be cool, OK. But I was doubtful, which has been my obstacle over the past few days.
My little faith in things working out for the best just isn’t working. It has occured to me that her being alive, and being brain dead, is the absolute worst case scenario, barring her turning into a zombie and eating the kids. I think that’d be a little worse.
But I’m joking. Wanna know how that happened. Oh… wait… well, yeah, it wasn’t a funny joke… shaddup.
I held BJ for a while, as much as I can, and talked with her. I admitted to her that this is hard, and told her that I think I’d trade places with her in a heartbeat regardless of the ‘keeping wife from bodily harm’ part, but because I’d take the physical shock and pain over this crap anyday. Hell, man, if I could lob off a toe and some fingers and feel better, I’d get the multi-pliers out right now.
I walked out, and talked to her folks for a while. Her mom seems to be a bit better, but they never leave the hospital. As I walked out with Mom, we discussed that. I can’t help them. I really can’t. I can help the kids, and myself, and I’ve reached out to BJ’s folks, but I can’t do anything for them. I think its bad for them to spend 12 hours a day in the hospital, but I can’t say I’d do it differently if it were one of the kids. I probably would, tho.
So, on the way out, as Mom and I were separating to go to our separate cars, we chatted about the nature of depression and faith. She told me what a shrink had once told her about one of my siblings, that they weren’t ‘depressed’, they were ‘demoralized’. They’d just had too much awful happen at one time, and it looks very much like depression. Maybe thats whats happening there.
I told her about what one of you folks said about BJ talking to God while she’s out, and how much I’d like that to be true, but how so much of my mind just believes in the meat. That she’s stuck in her head, if she’s awake at all in there. That theres no BJ in there, right now.
My little newborn faith is shaken, imagine that? Hell yeah, I’m starting to get a bit irritated. I still pray, but its an appeasement thing now, a “just in case, chief, please don’t smite my honey”. I feel bad about that, because I think I was allowed to see something I don’t usually see at the end of last week, and now that I don’t, my brain is just shutting down and forgetting about it.
Anyway, I don’t remember the nature of the conversation, but I felt better afterwards.
I walked outside, drove the van around, said ‘thanks’ to Mom as I drove by, waved at BJ’s mom sneaking a smoke (after a few years of smoking, and knowing full well how pissed BJ will be when she finds out… even without the tips of her fingers, I imagine she can form a very effective fist), and as I rounded the bend, I smiled at a lady in a Buick. She smiled back, and I thought “hey, this is alright.”
I drove out of the garage into the sun. I opened the sunroof door to let the sky in, and I saw two things.
I saw a rainbow, from the way the light was hitting the sunroof.
I saw a hawk, directly above me.
I’ll be fine. BJ will be fine.
I love you, sweet honey. Come on back when you’re ready.
The kids spent the weekend up at James’ folks house. I sent Bos over to Rutledge (the half-way point for picking up the kids) yesterday so I could savor the last few hours of quiet. I spent the time working on the next installment of the Willow Brook yearbook.
GAC and I did the yearbook together last year. It was MastaG’s first year as a cross-boundary student at WB, and GAC and I had decided to brave joining the PTO together. I don’t do well in social situations, and GAC made an awesome security blanket. The first meeting we attended was…interesting, to say the least, but we managed to not get scared off. GAC and I had both worked on the annual in high school (go Mavs!…ugh), so we let the PTO folks know that we would be interested in helping put together WB’s yearbook. We later met with the yearbook/publicity chairperson and started making plans. Within a month or so, though, the chair decided the PTO just wasn’t for her and GAC and I were left holding the yearbook and publicity bag.
So we got to work. Being new to the PTO and not quite understanding the whole school dynamic, there were plenty of bumps along the way. I chalked it up to being “on the learning curve,” but I was sensitive to making mistakes, misjudgments, etc and it ended up taking a toll on me. GAC seemed to handle it better, although her nightmare came in selling business card advertisements. Using Lugnut as an excuse, I asked GAC if she could handle that aspect. She agreed and hated every last minute of it. Rude business owners, rejection upon rejection.
The making of the yearbook itself was much easier and actually pretty fun. The process was a bit archaic - cut & paste. We went through many a bottle of rubber cement. We didn’t always agree on layout, but always worked it out and ended up with a really nice yearbook. In the end, it was a good experience.
Things changed with this year’s yearbook. Instead of using a publisher (Lifetouch charged out the ass), the PTO wanted to move toward producing it ourselves and saving some cash. Being familiar with layout & design software, I volunteered to head it up again. It was GAC’s last semester in school, and a very busy one at that, so it was no longer a joint venture.
So that’s what I worked on yesterday. I’ve never minded working alone on projects, but I’m realizing that doing the yearbook by myself this year is going to be lonely. I find myself missing GAC during moments like that, or when I’m waiting on the afternoon bus. I always looked forward to those brief visits. Fortunately, we’re out of cook-out season, or I’d be royally missing those, too.