Detethered 11-16-2010

We made the exciting trip to New York City and my surgery went pretty uneventful. When I woke up, I did not have a headache! That was the first time that I can remember not have a headache, possibly in my life. I had to lay completely still for 24 hours. Justin was able to stay in a fold out bed/chair, the entire time. Thank goodness. The caliber of nurses are no where near that of the nurses that I work with! And that is no joke! One nurse ran and antibiotic without running it through a pump, without a saline flush, and then went to lunch. Thank goodness, I am smart enough to stop it prior to air running into my veins. I could go on and on about that but the Doctors were awesome. Now I understand when Dr B gives me a hard time about being a nurse. The first time I told him I was a "bossy nurse", he said "you don't even have to say those two words together".

I was released from the hospital a full three days early. Then we flew home two days earlier than planned. My brother, sister, and Justin were with me the entire time. I was doing quite well walking around the room. My speech was clear, my shaky booty was gone, I could turn my neck from side to side. Yay! My cognitive function has not come back completely yet. Time....Kelli....time! I was even able to walk down the hall of the hotel without any assistance. Now I just need a cane instead of a walker or wheelchair. That is a huge relief. We were not sure how much of my leg weakness was permanent. The neurogenic bladder is permanent. I was pretty sure that would be the case anyway. So, all-in-all, I was improving everyday in NYC.

Then we flew home. Keep in mind, New York is Sea Level. Then the plane is pressurized. We stayed in Phoenix for a little bit then made the trip up to a mile high. WOWZA! The mountains from Anthem to Sunset Point I cried my eyes out. It felt like my back was going to blow out and my head was going to pop right off. The next day, Justin went back to work and I was home alone. I had nausea, diarrhea, headache, speech problems, pretty much everything I had before surgery. I cried on and off all day. It was horrendous. I waited another day or so and called the neurosurgeon in NYC the day after Thanksgiving. Can you believe he was there and got right on the phone? Dr B rocks. He asked me a few questions, I joked with him a little, and then told me what to have my primary care physician order for me. I called my PCP, on call, and they were kind enough to call it in. I guess I am getting better everyday but it is hard for me to see. I have been in bed for three days straight (plus the seven months prior to surgery). My head has constant pressure. The speech has cleared up. I have some shaking. I am not sure if it is the medication, the fear that the surgery has not made me completely better, or being stuck in bed for the holidays, but I am very sad right now. My hubby and the kids put the tree up and decorated it today while I layed in bed. I have missed out on so much this year. I hope this is just the beginning of the healing and I will be jumping right out of this bed soon!

Quick Post-op update

Woke up from surgery without a headache! Got out of the hospital three days early and flew home two days early. I was doing great in NYC. I am home now but I do not feel good enough to blog. I think the pressure change of being a mile high is doing me in. Hopefully in a few days, I will feel great and will update you. Otherwise, everything went great.

:)

I have CRS "can't remember sh*t"

Yesterday I got my my results from my cognitive functions tests. If I see something, I remember it. If you tell me something 5 times, I can only remember half and after a half hour I forget half of that. The conclusion is, that I have to write EVERYTHING down. Another weird thing is that I normally am left-brain dominant but right now I am working more with my right side of the brain. I can't figure anything out but bring on the crafts!

4 days until we leave to New York and a week until surgery!

Countdown to tethered cord release surgery begins!

8 days until we fly out, then one day of rest, another day for pre-op evaul, then tethered cord release surgery!

I have a roller coaster of emotions. I am excited but scared at the same time. The excitement is for the hope of waking up from surgery with relief from a life of constant headaches, low back pain, nausea, dizziness, neck pain, etc. My sister, that had the same surgery, just two years ago, said that she felt so good when she woke up. She said that she had the pain from the surgery but the relief from the headache and other pain was so substantial that it was unbelievable. We have had pain all of our lives that we are somewhat used to it.

The tethered cord release surgery involves going into my lover back, entering the dura mater (the thick covering of the spinal cord), testing the actual neural tissue to make sure that they do not cut that, and clipping the connective tissue. That is right, they will be severing the connective tissue that connects the base of the spinal cord to the bottom of the spine. There is no need for it to be connect in adulthood. This is being cut in hopes that my brain will float up and will no longer be pulled down into my spinal column. Then the cerebral spinal fluid will be able to flow more normal. After the surgery, I will be in a medically induced coma for 24 hours, be in the ICU for 3 full days and on the medical ward for 2-3 days. My sister, brother, and Justin will all be in New York with me. Then Justin and I will stay a few more days to make sure there are no further complications and fly back on Thanksgiving day. In the future, I will be closely monitored to see if my brain settles back down. If so, the brain surgery will be needed. Most Chiarians with tethered cord have to have both the tethered cord release and the brain surgery. Justin and I will be going for follow up once a year for the rest of my life or until they have an office out west. So, hopefully we will get to see the Statue of Liberty on one of those trips.

The surgery is just a symptom control. At this time, there is no cure for Chiari.

Get out and Vote!

I am so thankful that I get to go out an use my voting opinion today! I am so excited about a few major issues we get to settle. But, what I am most excited about is the end to the nasty, never ending political ads and phone calls to my flippin cell phone! Where do they draw the line anyway?

Last night Weston was not able to eat dinner. He complained about his throat hurting so bad that he was unable to eat. When I looked at it, it was red with some white marks on it. So, early this morning I was on the phone with the pediatricians office. He is seven years old and seems to get strep throat about 4 times a year. Poor baby! Thank goodness I have good friends that will pick us up and take us to the dr at the last minute.

Here I sit and think about how god has his hand in everything we do. I promise that I am not a very religious person but I have seen really impressive things in the last seven months. Two weeks ago I had lunch with my only cousin on my mothers side, his wife, and their adorable four month old baby. It was a wonderful time. When we were together, my cousin mentioned that his step-sister had just become a pediatrician and gotten a job in the area. When Wes and I were in to see the doctor this morning, it was a young, new pediatrician. I just had a funny feeling so I asked here name again. She kind of looked at me funny when I asked if she was Eddie's step-sister. Weird, but it was her taking care of my Wessy this morning. When I sent a text to my cousin, he sure thought it was funny too. Small world out there. Mind you, none of us grew up in Prescott!

I hope you all have exercised your right to vote or plan to after work! I am anxiously awaiting my husband to get off work so that we can make the crazy 45 minute trek to our polling place. I will have to take a zofran for the road that we have to drive to Whilhoit. Then all the reading, I am not looking forward to that. Good thing, I have already pre-read all the propositions! Yay!