LET THERE BE SPACE!

Bear with me while I reflect a little:) Do you ever look back at a hard time in your life and reflect on a decision you made? Sometimes you wish you had taken a different path and sometimes you realize that a power greater than yourself led to to the right one? I remember reading some of the philosopher Immanuel Kant in college. He suggested that at a crossroads a person can make a choice simply by not choosing. That is often how I felt after my appointment with first appointment with a neurosurgeon on January 6, 2003. I knew as of that day that surgery, very scary surgery, was in my future. I also knew I wouldn't trust him to remove an ingrown toenail. I spent the next 3 months calling doctor after doctor trying to find a neurosurgeon who had even heard of Basilar Invagination, let alone one who knew what to do now. When came to the realization that there were no good choices in Denver, I stopped trying. I gave up on hope of any help other than medication. Then, Dr. O moved to Denver and everything became crystal clear. It was meant for me to wait for him. I know to my core that by choosing to wait, I had made, or been influenced to make, the right choice.

Now, the good news. Bobby, Billy Bob and I saw Dr. O yesterday and yes, there is SPACE! I knew from Dr. O's description of the procedure that there was a lot of bone and other "stuff" removed to give my brain more room, but it was a whole other thing to see it on an MRI. "Things" feel different in there, but it was rather freaky to have a visual to go with how I feel now. Dr. O explained that the positive cognitive changes are directly connected to the flow of the spinal fluid. He said my progress was right where he expected and to not be discouraged in regard to the continuing headache. The focus now should be moving on with life. I admitted to him that I have felt like such crap for so long that I don't remember what I used to like to do.

When Bobby first stopped drinking he said he was struggling with how to reinvent himself. I think I know what he means.....

For the first time y'all are hearing from me directly. I hope I can be half as entertaining and informative as Bobby. Forgive me if I repeat him from earlier posts. Life is getting somewhat back to normal. As normal as life can be for someone with Chiari 0, platabaysia, basilar invagination and ehlers danlos syndrome. Didn't realize how much I appreciate driving for myself. Access-a-ride was a great service, but there is nothing like going where you want, when you want and with whom you want. I feel like I have lost 2 summers in a row. When I went in the hospital it was spring, when I got out it was full on summer. Now that I am back to work fall is just around the corner. I went back part time on Monday and hope to be up to full time by the end of August. When I got home from working 4 hours I slept for 2. My coworkers have been more supportive than anyone could hope for. The headache continues...and continues...and continues. The doc says he is not supprised, be patient. Other than being headache free I don't know what else to wish for. Progress for rest thus far...well...the right foot and left hand have begun to get the train with the rest of me and not have minds of their own. The world famous Dr. O suggested I start knitting to help get the left hand on board I had to tell him I had already started this last year when she was doing more and more her own thing. Another MRI, I have lost track of how many this makes, and another doctor appt on Monday the 13th. Cross you fingers and continue those prayers and positive thoughts, I can use every one :)

Babinski Shminski

Sharon went to see the outstanding pain doctor and he confirmed what the neuro surgeon had told us... that her Babinski reflex had improved to normal. This is when the foot is stimulated along the side, someone with neurological problems will have their toes curl up. Hers used to, but now they curl down. Wa- la! -a normal Babinski. Her hair has grown back, and she's heading back to work after one more week off.

Switched sides

What a freaky two months. We've switched sides of the bed. I'm in here and Sharon is riding the handicapped bus every morning to be by my side. It is a daunting task for someone who not too long ago was in a post surgery ICU. She is a tough lady. Thank you to all our friends and family for your logistical support, prayers and well wishes. Click here to visit us at my liver's blog.

Gone fishing

Yesterday we went fishing. I thought this day would never get here. The day had an ominous start as my abdominal pain threatened to cancel the activities, but it calmed down with the help of pain medication, and off we went on the accessaride to a friends' house and then to a local lake up in the foothills of Denver. We had no bites, but got to watch the fish jumping in a late afternoon feeding frenzy.

The follow up

Well, it came time for the one month follow up with the neuro surgeon. we saw him and he did tests in his office on Sharon and he found some improvement with things that we lay people don't know about. This is encouraging. Sharon states that some symptoms that she does recognize have gone away or lessened. So, he said that at one month he had three goals. 1- to have avoided serious complications, 2- to see some neurological improvement, however small, and 3- to see some improvement in the headache. We have seen some improvement, especially in the quality of the pain, not necessarily the quantity. So she has met the one month goals. Next on the agenda,... life.

Happy fourth of July

The neighbors woke us up on July 4th at 12:00 am, making the dog bark. Then at 2:00, then at 3:00. Sharon has this weird thing she does when her head hurts real bad, she turns around in the bed, and sleeps with her head at the foot of the bed. At 3:00 I woke to find her feet in my face. So, I had had enough. I called the police. They came, but said that they wanted to get the neighbors on something better than just disturbance. That thing came the next day, when they caught their house on fire.

My central line girls

I was never familiar with a central line I.V. until this April when my 22 year old daughter got very sick and had 5 feet of small bowel removed because it was dead and gangrene. She was in ICU for 3 or 4 days, and the hospital for 14 days. I was very worried about that central line. It saved her many sticks, as they needed lots of blood all the time, and had to transfuse her.But I worried just the same. Then fast forward to June. Sharon had to have one. You can't have brain surgery without one. It's standard. So, when Kelly came over last night to deliver some specialty foods and visit, they were comparing scars. If it was a contest, it was a draw. They both sport very impressive scars. The 'Kelly belly' scar is nearly from chin to navel, with many various small scars from drains. Sharons' is just as impressive, from high on the back of her head down past her neck, over 6 inches. And they both have central line scars. It was a tie.

Signs Of Hope

Sharon is starting to show signs of hope. She has had one continuous headache since thanksgiving 2002. Her recent surgery is going to put an end to the headache. Knockknockknock.
That's me knocking on wood. But there are some subtle signs that things might be changing. For instance - her needing less pain medication. Her not having to use the ice bag. Her not waking me in the middle of the night to have me put my hand on her forehead. Ever try to sleep with your hand on another person's forehead? Try it. tell me what you think. ( kinda weird). So, I, We hope that things might be lookin up. In the meantime, when she feels up to it, I'll be filming a thank you movie for the great care received by the hospital staff and support from friends and family. In the meantime, cross your fingers, etc. All prayers are much appreciated, in other words.

HOME

The eagle has landed! It is a done deal. Sharon is HOME.
I pray oh I pray... home to stay. Yesterday as soon as she got the new pain medication, things changed dramatically. She
could feel her surgical incision, something that she had not
been able to feel through the splitting headache. The new
medication has the ability to last four times longer than what the hospital had. So I took her home with he help of Aunt Julie, the sweetest lady in the world. Last night we slept. I mean for the first time in 14 days, we both really slept.
Hard.

The days are melting together

I thought I was going to crash and burn from no sleep today. We found out that one medication had been reduced, and they fixed that. She had a good shower, and ate
a fair amount of dinner. Her Excellent pain doctor will have them try a new medicine on Sharon tomorrow and the hope is that she can once again FLY THIS COOP.

Slow but sure

Well, I don't have much to add. We seem to be stuck in limbo. Sharon's existence has boiled down to moving about during the in between doses of Dilaudid. Increasing pain at the end of that two hour period. She has started to eat a bit more, (I really love that) and her hair is already started to grow back. We're going to get a change of address for the hospital, and have our mail sent there. All joking aside, I really want to get her out of there, because there are lots of really BAD cooties that live there. Time for Sharon and Billy Ray to come home!!

LITTLE BY LITTLE

Poco a poco. One day at a time. Yeah, we were all ready to go fishing at golden gate
park. Not yet, anyway. Sharon needs to make some progress just to make it home.
Friday night was very scary. Yesterday, she slept the deep sleep of someone with phenergan breath. No vomiting, though, thank God. Today was 50% better than
yesterday. Today she had a shower, and actually ate some food. We watched the second half of doctor Zhivago(we started the first half in the ER when my daughter was in last month). Strelnikov. Lara. Victor Komerovski. Wow, not bad for me. Memory... what a concept. Well, I will have to see that movie 10 more times before I really get the point.