November 9th, 2006 by Atomictumor
I was running late to see GAC. I was listening to Modest Mouse, and eating spaghetti, and chatting with Bos and Tessa in the shoutbox. BJ doesn’t have a watch, so I figured she wouldn’t mind if I was late. Besides that, her folks were going to go in a little early so they could have some time with their sleeping baby girl, and so that they could leave me time with my sleeping bride.
I wolfed down the spaghetti, and took off. Picked up Bos, and went back to the hospital. Her folks were walking down the hall.
I haven’t talked much about them. Her mom is living the grief in the moment, which is probably healthiest, but hard. Last week was very, very rough. I firmly believe that as much as I hurt, I couldn’t perceive the depth of her pain. It was evident in her eyes. I kept trying to reassure her…
But last week is last week. The worst never happened.
They were coming back from visiting her. We weren’t that late, it was 8:35 in the PM. I asked them what was up, and they said the nurses and docs were taking BJ in for that long delayed head CT!
Woot!
I waited in the Quiet Room with Bos, and we chatted. You guys all know, i’m sure, by reading this, that he is an exceptional man. He, in many ways, is what I aspire to, but what my nature defeats. I have that feeling about my father, as well, but most men do.
I heard a commotion outside, and jumped to the door. Instead of St. Nick, it was the bed with GAC, and about 7 nurses/attendants/doctors. Dr. Gavin was walking, and I called to tell him good luck. There was persistent beeping. My girl had left the ICU for the first time.
I was so happy.
—
We talked, about what I don’t remember, and they came back in time. I popped my head out, and asked if it was OK.
“Well, no” said Dr. Gavin “Its not OK.”
—
I’m listening to more Flaming Lips, because so much of their music is about the beauty. Wayne Coyne had to have seen something like this. I’m not going to give you lyrics, but I suggest you look at either The Soft Bulletin, Yoshimi, or At War With The Mystics. Maybe he’s just touched, or something, but I think I’m on the wavelength.
The title, “…but that moment never came” is the chorus that I hear right now. Maybe its not pertinent.
The moment came so many times. Thats the point
—
She’s bleeding in her brain. The medicine, zygris, or whatever, that had her bleeding from her mouth, and other places, and treated the severe septis, is probably the cause.
Rather, she had bled in her brain. Probably two days ago or so. Its not getting worse, and it can’t be treated. It might take two months to determine the permanent nature of the affliction. When asked, he suggested that disorders would exist.
Dr. Gavin was kind enough to show me the cat scan. I no longer desire a picture.
There were 3 or 4 small bleeds. One rather large one, in the part of the brain that would control mood and personality. He said that motor skill might be largely unaffected.
I know enough about medicine to say that there are no certainties about the brain. With all of the accomplishments, with all of the decades of training it takes to make a person an expert in what modern medicine knows about neuroscience, some things aren’t known. This I learned long before this event.
My cousins girlfriend had a headache, and went to the doctor. It turned out to be a very fluid, golf ball sized tumor. I never met her, but I knew he loved her very much. I know my cousin, knew him well as children, and I knew he was in pain. I never reached out to him, but thats for another day. I wish I had, but I’d wish that even if BJ wasn’t in this situation.
She’s now his wife, and recovered. A miracle, they say.
My grandmother had a stroke. Again, I never reached out. I hoped like hell, and I wished like hell that it would be good, and maybe that was a prayer that somebody who doesn’t know God can have.
She’s recovered.
The worst case has not happened since this began. I refuse to believe it will happen now. I said goodbye to my love on Monday, and before that on Saturday.
—
Additionally, the fingers on her right hand will most likely be pruned. From the top knuckle up on three fingers. No more nail polish, on that hand, but at least I can hold the fingers between mine. She’s left handed. The left hand is fine.
—
Apparently, it was a kidney infection. They think.
—
Oh, my BJ. My girl, I will hold my hand out for you forever and ever, waiting for you to take it. I love you. My lady, I love you so much. I would gladly take your pain on me.
I love you so much. Come back to me.
—
—
—
–
-
Why? Why can’t I just have her back now?
Edit - in bed - 12:30: I forgot to say, what I wanted to all the way home.
Pam pulled her eyelids open, they’re not aligned, or whatever eyes do when they point in the same direction. They were green this time. Empty.
She is deep in there. Thats why she hasn’t responded lately. I can’t fathom how deep, or what I have to do, but I’ll be here. Shes my BJ, and every second I spend with her is the greatest joy. I knew she was deep in there, because she hasn’t been responding. Now I know why.
As for the why question above? I’ll answer it:
Cuz.
Works for the boys, should work for me. I’ve said since the beginning that why is dumb. Valid, sure. Useful, no.
I’m cool with Pam, by the way. The day shift nurse today, Selena, was the opposite of her, and explained Pam in a way that reminded me of BJ. Pam was very friendly tonight. I’m glad she showed me her eyes. Even if the stare will come back years later to haunt me in my sleep.
I have faith, tho, that when that happens, BJ won’t mind me waking her up to look in her eyes.
I can’t not believe.
Nothing to fear, nothing to doubt.
Going to bed for real this time. Getting too used to being alone in it.
November 9th, 2006 at 11:57 pm
I don’t even know what to say. Other than even though we don’t know each other personally, I wish there was something I could do to make all these stumbling blocks that keep dropping in her/your path go away. I know you must be feeling so beat up at this point.
Will keep praying, hoping, and wishing. Be sure and keep taking good care of you and your children. You won’t be any help to her if you don’t take care of you as well. Hang in there…
November 10th, 2006 at 12:13 am
Praying harder.
November 10th, 2006 at 12:13 am
I know. I’ve been doing the GAC posse, but I’m tired.
I’m not taking this as badly as I’d think I would. I’m not emotional about it. Just, really, that she’s alive.
The only time today I cried was first thing in the morning.
I shouted “I LOVE YOU” many times driving by the hospital on my way home from dropping Bos off. The kinda thing that I’d see in a movie and think was dumb.
I’d talk myself in circles now. I’m tired. You’re right, Lynnster (do I have to say ‘,yeah’? Is that part of the gig?)
Take care of myself.
Turning of the Franz Ferdinand, going to bed.
Night all. The worst hasn’t happened this whole time, it wouldn’t happen now. God wouldn’t bring us all this way, to cripple her sweet little mind. All those worlds.
Night.
November 10th, 2006 at 12:32 am
My heart aches for you and your GAC. You are both in my thoughts.
JustJohnny
November 10th, 2006 at 12:51 am
I wish there was something I could say to make things all better for you as you go through this. I wish I could take all of this away. But trust in yourself, you can deal with this. I know you don’t want to, but you will. One day at a time, one hour at a time. You can do it, and you have so many others here with you, to see you through this. As you mentioned elsewhere, there are many who go through hell all alone … and that’s the loneliest lonely there ever was. You are truly blessed. Take comfort in that, and take care of yourself.
Prayers for you all as always.
November 10th, 2006 at 1:15 am
At–
So SO sorry to hear about the bleeds. I’m suprised they’ve said its untreatable though. I know skull bores have been used to relieve the pressure from similar problems as well as other treatments out there. Don’t give up hope. If you don’t like the answers you’re getting, get a 2nd or 3rd opinion. I work in the medical field and have for years. 2nd and 3rd opinions are a GOOD thing. Nite hon.
One last prayer before I sleep.
Peace for AT and for his Bride some relief.
Hope for us all in this world of disbelief.
One last prayer before I sleep.
November 10th, 2006 at 1:35 am
I don’t know if this is at all helpful, but brain bleeds are something I know about, having had a rather large one last February. If they’ve stopped, the easiest thing to do is to let the body reabsorb the clot on its own, like it would a bruise. I could have had a craniotomy or a skull bore, but chose not to (inexplicably, they left the decision up to us, two psychotherapists), and the bleed was completely gone in about 6 weeks. I took steroids for the swelling which worked very well. Except for a little bit of flakiness (that may have been there before but I prefer to blame the brain injury), I’m back to normal. I mean, what passes for normal…you know what I mean.
So my hope is this is just a side thing that won’t matter in the long run at all, and will seem like no big deal when you two look back on this time in 10 years.
November 10th, 2006 at 1:53 am
I am so sorry. praying and praying… hang in there and trust.
November 10th, 2006 at 2:22 am
You can say just Lynnster any old time, AT (or even just Lynn). The “yeah” is just part of me being a terminal smartass. :)
Keep on keepin’ on. And I am planning to be probably relocating to Knox Co. sometime within the next 4-5 years. I’m planning on remaining hopeful and prayerful and meeting you AND the missus when I do, and all of this will just be a long ago and not great memory. Dinner and/or coffee will be on moi.
November 10th, 2006 at 2:30 am
I’ve been lurking since Sunday when Cup O Joe Powell led me here. I’ve started to post a comment what seems like a million times, but the words never seem to come. They aren’t enough. I can’t begin to express how much your words have touched my heart. I’ve spent some time in the ICU watching someone I love fade beneath the vent tube and a litany of medications. I’ve wondered if the twitching was reactionary, if the grimaces were cries for help, if her hand was really squeezing mine. I’ve loved and hated the nursing staff. I’ve taken comfort in the numbers. I’ve whispered in a silent ear and been so bold as to grant permission for her to pass on.
Tessa is right. Don’t settle for the first diagnosis. Get a 2nd opinion if you don’t like what you hear. Get a third if you don’t like that one. Don’t feel like you owe it to the good nurses to not insist on better treatment from the grumpy ones. This is not a diner and they are not waitresses - they can’t spit in your soup if you send it back.
Regardless of your deity, or lack there of, you must believe in miracles and know that You can make them happen.
My thoughts, prayers, wishes and dreams are with your family.
November 10th, 2006 at 2:32 am
Argh! Apparently I DON’T know my own name. It’s 92 not 93. Sentiment is the same regardless of the number.
November 10th, 2006 at 6:49 am
Lots of tough news there, but like Kelvis# said get a 2nd, 3rd, … diagnosis. I know several people that were in extremely dire circumstances that made full recovers with no after effects. BJ is getting better (slowy, but steadily), she will come home, and she will be who she is. Long journey’s start with small first steps. No reason to think we know the entire path, and even the complete destination, when the journey has just begun.
As you know by know, but I will say it again, we are and will be praying until BJ is home and back to living a normal life. As the old song says “The God of the mountain is the God of the valley”. Bottom line we are going to pray for BJ, you, your kids, your family, your friends, and your situation until it is over. We will praise God for the great things that have occurred and we will asking Him why about the bad always knowing that He knows why and we never will.
November 10th, 2006 at 7:20 am
Praying hard.
On another note, your mom wasn’t being nice, she was doing a systems analysis and warning of overload conditions. Where there were 2 load bearing machines, there is now only 1, and the load has increased hugely. A systems check was in order. Take it seriously. You are enormously important to BJ and the kids, and to all of us. We don’t want to go through this again over something preventable. Don’t make me come down there and stuff you with veggies, boy. I know it is hard to think a straight thought for more than a minute about yourself, and it might make you mad to be harped at by 2 Jolie women at this time, but pay attention to your own health, get the sleep you need, take a Walkman and get some exercise to burn off some of that tension. The kids are fine, BJ is getting the best of care, who is looking after Jake?
November 10th, 2006 at 7:23 am
GAC. Is it gack or geeaysee? And what does it stand for?
November 10th, 2006 at 7:58 am
GAC = Golden Apple Club or Corp or something with a C
I can not remember…I read it a few days ago.
November 10th, 2006 at 8:12 am
Still praying for peace for you and your family. Wish I lived closer so I could help with the day to day.
Your story has certainly made me look at the small stuff differently, and it has made me wake up and take notice of the big stuff.
Keep the faith.
November 10th, 2006 at 8:29 am
Just read the update…still believing in a complete total healing…not entertaining any more “what ifs”…He is there and has been all along, holding your hand and wrapping His arms around BJ and cradling her through this…He loves her too you know, more than you’ll ever know…As it says in Lamentations, “His mercies are revewed every day.” Keep believing that…so thankful for all those who love you and are pulling for her, you and the family…I join with your mom in admonishing you to look after yourself, too. She’ll need you when, notice I said WHEN, she comes home…beach house invitation is open for R&R if you want it…lots and lots of love and prayers for ya
November 10th, 2006 at 8:43 am
Fuck.
Can I say fuck here? Because I really need to. I really do. I’m so sorry. I’m not giving up, no. Not that. Just pissed that you have that much more mountain to climb before you reach your destination. Fuck.
November 10th, 2006 at 8:44 am
Good morning AT. Here for the updates. I keep hoping for a miracle and I do believe with all my heart that there will be one. Even though BJ seems far away, she’s still here. I wished there was something I could do. I feel so helpless. Still thinking about you and your family.
November 10th, 2006 at 9:02 am
Yep. You guys are right.
A few things:
I have a lot of faith in her care here. Look, I’m not one to go around saying things like “God put her in the hospital”, but I do believe it.
Thats why I was saying the worst case scenario hasn’t happened yet. It wont. Jiggy and Grandma survived terminal brain problems, with full capacities to love, and to do, and to experience. BJ will too. I’ll write more about that in a sec.
All of my prayers still start, very sincerely, with “thank you’s”. Thanks for the years we’ve already had. Thanks for the wonderful boys. Thanks for my family (you folks are all honorary family, unless you’re official, badge carrying family). Thanks for hope. Thanks for letting me see the beauty I’ve seen this week.
Thanks for BJ. Plain and simple. She’s a gift on the world, and I got to have her. I get to have her.
Hmm… I started pontificating on GAC’s name, and it turned long, so its gonna be a post.
Then I started writing the post, and I never posted this! D’oh!
Sue, everybody, I know. I know that I’m in danger. My mind can hold on, but my body is weak. I missed the 3 PM show yesterday to sleep, I’m not afraid to miss more. Particuarly now that she’s so far down there, she might not miss seeing me.
She certainly won’t remember.
Back to the post. Its turning into that story we were talking about.
November 10th, 2006 at 9:03 am
I have a friend who just returned home fully functional from Pat Neals with a brain bleed and they didn’t expect him to survive….
Your faith and hope and love are wonderful miracle workers and I will continue to pray and send lots of healing, loving energy your way!
November 10th, 2006 at 9:23 am
Keep the faith AT. Still praying…
November 10th, 2006 at 9:32 am
I went in to a neurologist for migraines and they discovered a brain cyst the size of a golfball near my hypothalamus that I have apparently had my entire life. Except for the MRI, they never would have found it.
The brain is unpredictable, but it is also an amazingly plastic organ. Have hope.
November 10th, 2006 at 9:44 am
Strangely enough, I just finished learning about the central nervous system in one of my classes. The thing to take heart from is that the brain contains a lot of redundancy and we know relatively little about how the darn thing works.
Grandpa and my Mom guessed a kidney infection back on Sunday. Treating the symptoms tends to keep doctors busy enough that they don’t have time to ponder the cause.
November 10th, 2006 at 10:22 am
Still checking in, still thinking about you all, still praying.
I was an ICU nurse for probably 15 years or so before I left the world of shift work for normal business hours. I hope I was one of the good ones. I know I shared in some pretty wonderful times and some pretty awful ones, but you do a wonderful job of making it clear how these other people influence your experience in both a positive and negative way.
The moment hasn’t come, and I’ll keep on praying that the moment everyone on this site WANTS to happen will happen soon. Wake up and become healthy, BJ.
November 10th, 2006 at 11:05 am
I’ve been lurking here and haven’t commented yet for lack of the right thing to say. Your devotion and support have rendered me speechless. This post in particular…wow.
Your family is in my thoughts and prayers. I hope you get some answers (good ones), soon.
November 10th, 2006 at 3:02 pm
AT, I’m checking in for the first time today. You guys are so in my prayers, all the time. My husband and I are both praying for you and for GAC through all of this. We pray that she will come back to you…100% back to you.
You are right - she is young, she is strong, she can do this. Take care of yourself so you can take care of her.
Peace.
November 10th, 2006 at 4:06 pm
my son was born with a bum brain … autism, to be exact. the brain is such a mystery. and when the doctors say he’ll never do something, that has never stopped him from doing it. for 7 years he has been proving dr.’s wrong. the neurologist just shook his head and said a sarcastic “good luck”. i say bring it on and i never underestimate miracles. there are days my patience wears thin waiting for them but, {sigh}, hang in there. the doctors only know so much and GAC may surprise them all.
i am still praying HARD for you guys … patience, peace, healing.
November 10th, 2006 at 7:11 pm
Sumgirl, theres a friend of ours (in the blogging community) who has a son with Aspergers, and she says very much the same thing.
Miracles abound.