Pre-Op

We went for pre-op today.  We were there for almost 3 hours.  Yawn!  

The anesthesia lady ordered lab work for AC at the last minute and AC had a freak out.  Today was the first time she's ever had her blood drawn.  The nurse put some cream on her arms so she wouldn't feel it when they took the blood but by that time she was already worked up so it didn't matter. 

On the way home we had lunch with Rusty then stopped at the Mall of Georgia.  AC got a new friend at Build-A-Bear to take with her to the hospital.

AC and her new friend, Dr. Sarah Bones.

Example of Chiari I Malformation

I've been asked exactly what is wrong with AC's brain.  I am a visual learner so the best thing I could do was to find an example.

This is not AC's MRI...just one I could find to explain what is going on.

The red circle shows the problem area.  AC has a 2 centimeter herniation, which is bigger than the example.  This was a 1.6 centimeter patient. It doesn't sound like much until you think that part of your brain is almost an inch out of place.  No wonder she hurts so bad!

Her cerebellum should be nice and resting in the skull but hers is being pushed through the tiny hole that your brain stem comes up through.

This is a diagram of what a normal brain is suppose to look like and the white outline of how the Chiari is formed.

I will be writing a thank you note to the radiologist at ARMC who caught this on her CT Scan.  That doctor saved us a bunch of the running around that most people face before being diagnosed.  

She's been talking about her surgery a little bit today.  I'm trying to answer her questions the best I can without scaring her.  Her biggest fear today was the staples.  Those are never fun no matter where they are.

I am off to research Wonder Woman.  AC told me today that she would be all better by Halloween and she needed a WW costume.  I think this year that is definitely the costume for her.  Her strength has been amazing.

Have a great weekend and GO DAWGS!

Surgery Scheduled.

What a day....

AC aced the MRI. She was able to do it without being sedated. The scan only took 20 minutes since she didn't need any drugs. She watched 'A Cinderella Story' and didn't move a muscle. So proud of her!

After the MRI we went to the gift shop and bought her a prize...a cute puppy dog purse. It is sooooo Anna Cate...

We met with Dr. Boydston for about 20 minutes today. He was amazing as always. We all huddled around the computer screen while he explained her MRI. He pointed out the part of her brain that has herniated and said it was substantial. Rusty says it looks like a funnel cloud is coming down out of her brain. Dr. Boydston said that the spinal fluid is having a hard time flowing and that the swelling and pain in her neck and back is caused by that. Most kids don't have the extent of herniation that AC has.

The solution is decompression surgery. It sounds scary, and it is...but doing it while she is young is the best thing. They will make a 4-5 inch incision in the back of her head and move the muscles aside. Then part of the back of her skull will be removed to make room for her big brain and that will help the flow of the spinal fluid.

None of her hair will have to be shaved. Many of you know that is the thing I've been obsessing over (a stupid trivial thing, but it was all I could focus on...) This surgery should end all headaches and pain associated with the Chiari. She will feel some stiffness in the neck for a couple of days/week but shouldn't have any other pain. She should fully recover and feel 100% better.

The surgery is on October 5th, is being done at Egleston and should last 2 1/2 hours. She should be in the hospital for 1-2 days after the operation. It all seems so quick compared to the horror stories I've read online...but those were adult surgeries and it is way worse for older patients.

We ended the day with lunch/supper at Steak N Shake with Staci and Kevin. It was awesome as usual and now...I'm sleepy.

I think that I will finally be able to sleep now. Ever since I got the call from her pediatrician a month ago I haven't been sleeping but 3-4 hours a night. I didn't realize how worn out I looked until I saw some pictures from tailgate on Saturday. Yikes.

All in all it was an amazing day. Nothing puts your child's illness in perspective than seeing all the other precious kids at the hospital that are way sicker than AC. I am very thankful that while this is our reality for now, it will soon be a thing of the past and life will be normal for her. So many children aren't that fortunate.

Thank you so much for the prayers today. I know things would not have been as smooth for us today without them. We know we are loved and we love you too!

H1N1

Cole is finally back at school today. He tested positive for H1N1 on Friday.

I haven't taken AC to the doctor but I'm pretty sure she has it. Her temp doesn't go above 100.6, but she has all the other symptoms. I am hoping that she's just got a lighter case of it and will be all better by Thursday morning.

If Rusty and I escape this without being sick it will be a miracle.

Anna Cate was very excited about getting to go to the Georgia/South Carolina game once Cole got sick on Friday. She even sang a song about it being her lucky day. Cole knew he couldn't go but I don't think he was a big fan of her song...

There was a moment at the stadium on Saturday where I felt like the worst parent ever. It gets really loud up in the concession area when everyone is screaming. AC looked at me with her hands covering her ears and tears in her eyes and said her head hurt. It never occurred to me that the harsh stadium lighting and the screaming 92,746 fans would give her a headache. DUH! Thankfully I was prepared and had Tylenol with me. She hung in there and only asked to go home once during the 4th quarter.

48 hours from right now we will be getting in the car to head to ATL to get the MRI. Bring it on...

MRI Scheduled for next Thursday

Nicole with Dr. Boydston's office called and had AC's MRI appointment set up.

September 17th, at 12:00. We have to be at the hospital (Scottish Rite) at 11:00 for set up (sedation), then the scan is at 12:00. Immediately after that we are to head over to Dr. Boydston's office to get the results and to finally learn what the outcome will be for our little princess.

AC had a great weekend. She was headache free from Friday afternoon til Monday at 4:00 a.m. She is complaining of pain in her eye today, that is a new thing....

We are back to the waiting game. Waiting the 9 days for the MRI is a cake walk compared to the 19 we had to wait to see the neurosurgeon. I'm just so ready to KNOW something.

Praying for patience....

Dr. Boydston. Love him.

Yesterday was our long awaited appointment with the neurosurgeon.

Here are the highlights:

• AC does have Chiari I malformation. (we already knew that...)
• He is scheduling a 2 hour MRI for her.
  
• Immediately after the MRI we will meet with him again to go over the results.
  
• Only 15 out of 100 Chiari patients require surgery.
  
• Dr. Boydston rocks. He has an amazing bed-side manner and immediately put us all at ease. It was worth waiting the extra 2 days to see him.
  
• AC is cleared for soccer and anything else she feels like doing...for now.
  

We started the day with lunch at the Cheesecake Factory with Momma, Staci, and my football spouse, Mrs. Lori Hullett. Our waitress was a hoot and very accurately called Lori, "troublemaker" all during lunch. Love you Lor! Thanks for coming to lunch!

The staff at Dr. Boydston's office was great from the minute we walked in the door. Thanks to a HUGE exam room, Momma and Staci were able to come back with us for the consult. That was surprising but I was thankful to have all the extra ears in the room.

Dr. Boydston came in and greeted all the adults then he hopped up on the table with AC and proceeded to have a very detailed conversation with her. We spent about 30 minutes talking to him and much of that was just getting to know him. The fact that he spent that much time with us to basically order an MRI was impressive. AC soaked it all in. The more he talked, the more I relaxed.

The CT scan she had in Athens showed the Chiari, but an MRI is needed to see the extent of everything. She will have a 2 hour MRI sometime in the next 2 weeks at Scottish Rite. It is going to take so long because they have to check how her spinal fluid is flowing. I'm so happy she gets to sleep through it. I can't imagine being that still for that long as an adult. I know my fidgety 8 year old can't do it. It is tough to have to wait again but at least we know we'll have solid answers after the MRI.


My comic relief moment of the day:

On the way home tonight Cole asked AC, "Did you like your brain doctor?" Her response, "Yeah, his daughters go to Georgia."

Of all the wonderful things to say about her doc...that was her first response.

Go Dawgs!