Thursday, October 25, 2007
She told me to stop being chicken and start turning my head so my muscles don't spasm. What she failed to consider is that muscle spasms seem normal to me. So I'm going to start moving my neck around more and improve the flexibility.
As of this upcoming Tuesday, I can start lifting 15 pounds - that means I can start loving the puddy properly - YAY!
Monday, October 22, 2007
Sunday, October 21, 2007
I'm thrilled that Chiari got national exposure tonight!!! This is by far the most important thing!!!!
I'm a little disappointed in how much ABC dramatized the severity and symptoms.
I can't blame the Carter family for how they were edited.
I'm disappointed that such emphasis was put on the possibility that Chiari is hereditary. Moms feel bad enough for their kids that have Chiari - this just made them feel that it was their fault that their kids have it. The statistics on passing Chiari along to your kids is 12% if you have it. I look at it this way: I know I have it, I know it's possible that I could pass it on to my kids one day, I'll look out for symptoms and have them tested early.
Most people with Chiari don't die. Yet there was significant emphasis placed on the possibility of death from Chiari by ABC's editing. (I visited the Carter's website and don't believe that it's anything they intentionally emphasized.)
The Chiari Support Group on Yahoo (great site!) is now flooded with people panicked about the possibility of dying from Chiari and of passing it onto their children.
At least the nation has heard about Chiari!
Thursday, October 18, 2007
Monday, October 15, 2007
3:15 PM Update - My sister just left...total time spent with me today? 3 hours and 6 minutes. :) She promises to be back tomorrow.
Sunday, October 14, 2007
The hubby is going back to work tomorrow and my sister is staying with me all week. Does anyone want to take a bet as to how much time she actually spends with me? :)
Let's see...lots of visitors this weekend and lots of food! Thanks for visiting and for all the yummy food everyone!
I took one extended necessary car ride today. I NEEDED a pedicure so my mom and aunt took me to get a pedicure and my eyebrows waxed...then we stopped on the way home to pick out the paving stones for my backyard, then I transferred cars and went with the hubby to Lowes to get a pressure washer.
Then I went to the hubby's softball game (they won!) which is at a park that is 2 miles from my house. So I suppose that was two car rides, but I consider them both necessary for my sanity. I took a nap in between if that makes it better?
I plan on going back to work in 2 weeks. I feel pretty good now - just a little tightness in my neck and I get tired easy. I'll probably work from home a lot at first until I'm used to sitting at my desk for hours on end.
I've noticed that I can smell things better now. It's kinda weird, but I smell the air freshener in my car when I never really used to before and I can still smell the flowers I got from Will's work and his parents. Pre-surgery I would only be able to smell flowers if I held them to my nose. I noticed this in Colorado at Margot's when there were 3 bouquets of flowers in my room at her house. I didn't think much of it though until I got home.
Wednesday, October 10, 2007
The flight home was uneventful - the titanium plate with 32 staples did NOT set off the metal detector - I was a little disappointed.
I did not use a wheelchair, thus walking the Denver Airport from curb to gate B25. Hubby upgraded our seats so that we sat in the first row...totally smooth!!!
I got home and caught up with everything, which is what got me in trouble.
If you call/text and I don't answer, I promise I don't hate you...I'll get back to you ASAP and I really appreciate you thinking of me!
Tuesday, October 9, 2007
Monday, October 8, 2007
This photo was taken today, a week after the bruise was first made by the nurse. This is from drawing blood for the pre-op blood work. I have NEVER bruised from having blood drawn. (And that's happened a LOT as evidenced by the scar from where scar tissue was removed - lower center).
This is a photo of my left wrist/hand where my original IV was until the nurse pretty much blew it out Wednesday night. The big dark freckle is actually the scab from where the needle was. The whole back of my hand is still sore and there is a slight lump where my once functioning vein lived happily.
This is the back of my head on Saturday the 6th. It was compared to the photo on the 4th after the hubby said "Wait a minute..." after checking the back of my head for me. Everything matched up, false alarm. :)
This one was taken today...yes my hair really is as nasty as it looks...currently sporting the mickey mouse ears hairstyle. Ridiculous, but keeps the hair off my face and neck. It's a test image for the official EASY button/Staples photo I will take before the staples come out on Friday. I have a sick sense of humor, I know. :)
Thanks to the hubby's excellent blogging - with timelines! - there's not a whole lot for me to add. Thank you bunny!
Today I woke up feeling pretty "normal". I got up and read on the couch until the hubby woke up, then took a bath which is my second favorite thing, next to Margot washing my hair (which I hope she does tonight - pretty please?). I got dressed in my now custom Sharpie shirt (a little off the back so my staples don't catch), put my contacts in, and plopped back on the couch.
And now, I present to you, my head...more specifically, the back of my head. (Please note how quickly my hair is growing back.) If these pictures give you the heebie jeebies, I'm sorry - I've had several requests for them though and I think they're kinda cool...there are 32 staples by the way...I'm a little sad that there weren't 33 :(
This was taken on the 4th about 48 hours after surgery...Dr. Oro was very pleased with how it looked. This is right after he removed the bandage. I wish you could see my hair style - it was literally pulled into a ponytail on the top of my head that fell to the left side. The rubber band? The bottom of a rubber glove. Styled by my favorite nurse the whole time I was in the hospital...I just can't remember her name because it was something unique and I was still groggy from anesthesia. She is a traveling nurse from NY and we talked about how pleasantly different people are in CO compared to our home states.
I'm having trouble uploading the rest of the photos to Blogger right now...I'll try again later.
Sunday, October 7, 2007
That's about all she wrote for this time around. She isn't quite up to getting on here and typing yet, so please be patient! :)
Friday, October 5, 2007
Hopefully she will be feeling up to blogging tomorrow. Talk to you all soon.
Thursday, October 4, 2007
I arrived at the hospital a little after 8 this morning, and Jenn was resting in bed. She wasn't feeling that well. I noticed that her IV needle had moved from her left hand to her right arm, which was really bugging her. The doctor came in, and he was asking how she was feeling. She had gotten pretty sick last night after I left. The doc pretty much nailed it as to why she was getting sick. She was taking Percocet for pain (and my mom would tell me later that pretty much everyone gets sick from that). So, they switched her to Vicodin and that seemed to do the trick. They made Jenn order breakfast so she would have some food before she took the Vicodin. They wanted to leave the IV needle in just in case she needed the Phenigin for her stomach. Jenn was not happy about this. This was compounded by the fact that had she been switched to Vicodin yesterday, she probably would have been out today! Hence the medicine mix up, get it?? :)
About 10 AM, Jenn got out of bed and she walked up and down the hall. This made her feel better almost instantly. She ended up sitting down and walking around most of the day. She was able to even walk out into the waiting room the entourage has gotten to know so well. The doctor came in and visited with her briefly, but said she couldn't take out the IV needle until 5 or 6. Also, he didn't mention any time line as to when she will be able to be discharged from the hospital. Jenn was not very happy about having to leave the needle in.
While the doctor was in, they removed the bandage exposing her stapled head. It didn't look as bad as I thought it would. I have a picture, but I will not be posting it until I get the go ahead from the patient.
At about 4:45 PM, Jenn's day was made: the nurse removed the IV needle from her arm. That was about the happiest I have seen Jenn since her surgery!
I went and got Burger King for Jenn for dinner, which she was happy about. The hospital food for the patients is not as good as in the cafeteria for some reason. She ended up eating most of the chicken fries I got for her.
At about 6:30 PM, Jenn wanted to get back in to bed so she could see the television. By this time, she was extremely bored and really wanted to get out of the hospital. Shortly after getting to bed, Jenn went to sleep, and I ended up leaving the hospital at about 8:15 PM.
I am glad people all of you are satisfied with my blogging. I strive to upkeep Jenn's high standards when it comes to blogging. Hopefully Jenn will be able to make an entry tomorrow night. I am pretty certain that she will be getting out of the hospital tomorrow.
Wednesday, October 3, 2007
8:15 AM - We arrived at the hospital to visit. Of course, Jenn points out that we are 15 minutes late. She said she was not feeling very well and asked us to leave. She ended up getting sick and they gave her Phenigin to relieve her nausea. So, since this stuff puts her to sleep, there's no sense in sticking around, so we head off to Starbuck's and Margot's house.
11:25 AM - We arrived back at the hospital and she was sitting up in a chair. She had also walked up and down the hallway a couple of times. She really wants her catheter removed. A call is in to the doctor to get it removed.
12:45 PM - Jenn ordered her first meal, which consisted of a grilled cheese sandwich and pudding. While waiting for her meal, Jenn got nauseous again. The nurse gave her more medicine to settle her stomach.
1:15 PM - Jenn ate her meal with no problem. After she finished she got back in bed to take a nap so we decided to leave her alone.
2:15 PM - I went in to check on her and she was sound asleep so I decided to let her be and headed to the waiting room.
4:00 PM - I went back into the room again and she was awake, but she was still in bed. The nurse came in and informed us that she was officially a "floor patient" which means she is not hooked up to any more machines. However, she is still in the ICU. The reason is because there are no beds for her to move to. Jenn was okay with this, however, because she is ensured of having her own room until being moved. There are three other patients that are awaiting a regular room. We are unsure about when she will be leaving the hospital.
5:30 PM - Jenn orders her dinner (mac & cheese and ice cream) and Margot and I are sitting there with Jenn. She seems to enjoy Margot's company more than anyone. Perhaps this is because the three of us talk about regular things as if we weren't even in the hospital. Also, she knows that we will be staying with them once she leaves the hospital so she wants to be nice to her hosts. Jenn was tired after eating dinner, so the entourage goes to dinner at BJ's (yes, there is a BJ's here in CO).
7:50 PM - We arrive back at the hospital to see Jenn one last time for the day. Jenn's mom was anxious to see Jenn, so right at 8 we went in to see her. Jenn was awake, but she wasn't in that great of a mood. Jenn's mom stayed in for about 5 minutes then left to let Jenn's aunt come see her. She just wanted to say good night to her, then she sent Mom back in. Mom said goodbye to her, and then about 5 minutes after Mom left, I decided to leave and let Jenn rest (which seemed perfectly fine with).
Hopefully Jenn will be feeling even better tomorrow and will walk around more. She needs to walk around because it will help in her healing.
Also, I want to thank all of you for all of your concern and prayers. Jenn will really appreciate it (once she actually gets to see it!)
Tuesday, October 2, 2007
5:15 AM - Jenn and her entourage (as she calls us) arrive at the hospital.
5:35 AM - Jenn taken into the preop area.
7:15 AM - We meet with the surgery team to go over everything before the surgery.
7:25 AM - Jenn is given her "happy drugs", we hug her and she is wheeled off into the OR. (Jenn would later tells us that us hugging her was the last thing she recalled prior to the surgery).
8:15 AM - Call from Claude (RN) to inform us that the surgery is officially underway.
10:15 AM - No word from the OR since the call from Claude. He had told us that we would be updated every hour. We hope that this is a sign that everything is going well.
10:45 AM - Claude just called us. The surgery will take longer than expected. There is additional bone that needs to be removed, which the doctor told may be the case. However, the nurse said she is doing very well.
12:15 PM - Four hours in and Jenn is still in surgery. We have not heard anything since the last update. As far as we know, the surgery is still going well.
12:30 PM - Just heard from the OR again. They are closing up the wound and she should be sent to recovery in about 30 minutes or so. The surgery went really well. We should be meeting with the doctor shortly.
1:30 PM - Met with Dr. Oro. He said the surgery went well, and he was very satisfied with the results. The surgery took longer than expected because the brain herniated down to cervical 3, which is rare. Also, cervical 1 was fused to the skull bone (which the doctor had suspected). So, he cut away some of the skull and cut away cervical 1, and shaved down cervical 2 and 3, leaving plenty of room for the brain. He stated that the left tonsil of the cerebellum than the right, which is normal. Because of the herniation, there was a cyst on the left tonsil because of all of the pressure and rubbing that was going on in there. Also, they did end up installing a titanium plate. Now that we know Jenn is safe, the entourage is off to get some lunch while Jenn is in recovery. Hopefully we will get to see her in about an hour.
2:00 PM - We finished with lunch and decided to take some of our stuff back to the car. This is not a short trip. Jenn's mom and aunt had to go to the bathroom, and while Jenn's uncle and I were waiting, we ran into a gentleman from Texas whose wife had the same procedure done by Dr. Oro in March. He said he really liked Dr. Oro, and that a lot of the things that bothered her prior to the surgery went away. It was really nice to hear that, and quite a relief.
2:30 PM - We get to the waiting room of the ICU. We are told that Jenn will be in recovery for about 10 more minutes, then the nurse will need to spend about 15 minutes with her after that. So, we had a seat in the waiting room.
3:15 PM - The nurse came in to see us. She said it took longer to get her up there than she thought, but she was ready to see us. She was very groggy, but she was doing good. She said her shoulders hurt more than anything. All she wanted was ice chips and to be left alone. She did mention that technically her "tonsils" were removed, and wanted to make sure that made it in the blog. Yup, our Jenn is just fine. :) We decided to leave Jenn alone for awhile and let her rest.
4:40 PM - Margot arrived at the hospital and her and I hung out with Jenn for awhile. Jenn seemed to be doing better and she was a little more talkative. The first time we saw her she really didn't want to talk. She was allowed to lay on her side, which made her feel more comfortable. Also, she was given Sprite by the nurse. Margot and I decided to have fun to see what we could do to change her vital signs on the monitor. She was quite amused by our little game. Another sign that Jenn is already on the road to recovery. Jenn told us that she would rather us not come back after dinner, so we left her at about 5:20.
Hope you all enjoyed the update. I will let you know tomorrow how she is doing.
My mom wants to meet us downstairs at 5:10 AM...which means we need to leave the room at exactly 5:00 AM or we'll be "late".
I was ready 10 minutes early. So I felt compelled to say "hi". I'm mildly nervous, but mostly excited...kinda like Christmas...I can't wait to see what's going to happen!
Gotta go now...I have a feeling there will be a bunch of photos taken to document the fun. I consider it blog material...actually I'll probably make a book o' surgery.
TTFN - Ta ta for now!
Monday, October 1, 2007
When I met with the nurse this morning she asked if I was anxious. Actually, what she asked was, "You've got to be pretty anxious about the surgery, right?" Quick thinking Jenn said "Yes, a little". I figured that if I said no, she'd send me off to the psych ward for an evaluation.
Seriously, I think I'm the least worried about the surgery than anyone else. I'm looking forward to seeing how I feel post-op and what changes for the positive. Really, I promise. :)
We landed in Denver about 2:30 PM and Margot picked us up. We went back to the Hart's beautiful house and started cooking dinner while Will tried to get Rockies tickets for that night. Margot made her mom's chili (with a little improvisation) and left me with the task of making cornbread from scratch. All turned out edible and quite tasty and then we headed off for the stadium.
Totally scored with free parking in a semi-residential area and took the random photo found here.
We then hiked all the way around the stadium getting our tickets from Will Call and then to our seats in far left field. It was a good game and the Rockies won against the D-backs - YAY!
We went "home" to the Harts and went to bed.
Slept in ridiculously late. Margot (aka Rachel Ray in training) made us delicious caramel apple cider and baked banana nut cranberry bread - also very tasty. The Hart's had various commitments, so the hubby and I headed off in the Mini Cooper to explore Highlands Ranch aka find all of the nearest Starbucks!
About 3:00 Margot returned home and then drove us to take photos for our Christmas Cards (planning ahead - besides, this way I can address them all while I'm sitting at home). After our photo shoot we went to Aaron's work and had caricatures drawn of us...neither couple looks remotely close to what we actually look like, but they were free and good for a laugh. (He actually works at a retirement resort and they were having some sort of event for staff and residents.)
We had tri-tip, strawberry spinach salad, and garlic bread for dinner with another couple. The girl had just had eye surgery, so Aaron's prayer before the meal went something like this: "Dear Lord, we pray for Jamie as she recovers from eye surgery and also for Jenn as she has brain surgery on Tuesday." We couldn't help but laugh at how pathetic and depressing that was. Margot made Apple Cobbler for desert which was tasty even though she disagreed and promised that she'd make it again for all of us next weekend. Oh Darn!
Most important thing to note thus far: Margot is an excellent cook!!! I highly recommend staying with a friend that can cook pre- and post-op!!!
We played a game of Sorry! and went to bed.
Starbucks and then off to the hospital for my appointment at 10:00. They did all of the lab work and I met with a nurse for all of the pre-op questions and we were out of there at 10:30!! Seriously LOVE The Medical Center of Aurora!
Went to Target to get slipper socks and a comb. Yes, I selected the bunny slippers and the cow jumping over the moon. :) Got Margot's must read book "Twilight" from Barnes & Noble and then met Margot for lunch at Heidi's Brooklyn Deli (meatball sandwich on wheat bread = VERY tasty!).
Went back to the Hart's packed up the necessities for the next few days (staying at the hotel right across the freeway from the hospital tonight - Will's going to stay here until I'm out of the hospital/when my mom/aunt/uncle leave). Back to Starbucks and then to Dr. Oro's office for my 2:00 appointment. He went over the MRI and surgery with us (again for me, first time for the hubby). Decided that he wanted a CT scan for his road map tomorrow and asked his poor scheduler, Shelly, to get one done before my surgery. It was then 3:00 and my surgery is at 7:30 AM tomorrow. Like the trooper she is, Shelly calls the radiology department and listens to them LAUGH at her. Then they make an appointment for 4:00 - how cool is that?!
I'm kinda excited that I had the CT scan. Since June 29th, I've had, 4 MRIs, an EKG, AND a CT scan. If I had to pick one, I'd go with the CT scan - it's quick and quiet.
Dinner at Chili's with the Harts and my mom and aunt. Margot has been referring to it as "The Last Supper" which I find much more humorous than "my last meal" as I've been calling it. Queso and Cajun Chicken Pasta = YUM! Leftovers go to Margot for lunch tomorrow.
Now we're sitting in the Holiday Inn and I'm trying to get sleepy so that I go to sleep soon. I've got to be at the hospital at 5:30 tomorrow morning. Ugh, that's early!!!
Thanks to everyone for the prayers, happy thoughts, comments and text messages. Will (aka the hubby) should be on here nightly with updates until I'm back to blogging.
This is just my story of my experience with Chiari. Until I was diagnosed, I'd never heard of it, and I just want more people to be aware of it. I'm not a doctor, so don't quote me on any of this stuff - k? If you are looking for information about Chiari Malformation, a lot of the more informative posts are the older ones.