Halloween Hates Me

It's official, Halloween hates me! In 6th grade I was sick leading up to it, but was feeling better two days before. My doctor warned me to be careful, I of course didn't listen, and I ended up back on steroids and antibiotics three days after Halloween. Then we get to 7th grade (last year) where I spent Halloween (and 6 days leading up to it) in the hospital! At least firefighters came to give out bags of fun stuff that were donated by different schools! Some of the nurses dressed up or wore fun scrubs, one nurse actually wore Christmas scrubs which was pretty funny, but still not the ideal way to spend Halloween. Then we get to 8th grade (this year) - laying flat on my back with a spinal fluid leak wasn't the way I planned to spend the holiday. We emailed my doctor what was going on and he responded that I have to stay flat on my back and that Friday is the soonest I'd be able to sit up. After that I have doctor's orders to be a 'couch potato' for a while. I'm the first person to admit how lazy I am, but after weeks of not being able to get out of bed - or if I did get out of bed the furthest I went was downstairs to lay on the couch all day for a change of scenery - I all of the sudden really want to go run a mile! I know as soon as I'm up and able to walk again I'll regret ever thinking that, but being in bed with nothing to do but watch reruns over and over makes me want to go run!
I've definitely been getting better the more I lay flat so that's a good thing. I'm just not happy to have to do it. The neurosurgeon we were originally going to use said that recovery would be easy (walking around a week post surgery, my butt!), but my body seems to be following along the lines of what the neurosurgeon who did my surgery said, "With you all bets are off!". So, sorry Dr. Tye, I know I said I'd try for three months of good health, guess that didn't work out. Between the challenges Brody (my tethered cord buddy) and I have given them, I sure feel bad for the pediatric staff at VCU.
Have a happy Halloween!
All my Love ~ The Sic(k) Chick

Update!

Hey! I haven't really been posting because I thought things were going well....haha yeah as if. I tend to not do things how I'm supposed to do them. For example you aren't supposed to faint three weeks post spine surgery, or fall in the shower (twice) within a few days of fainting, and last but not least you aren't supposed to be getting really bad headaches (that aren't POTS related) every time you sit up. That last one is a symptom of a spinal fluid leak, we're keeping our fingers crossed that I don't have one. But I'm having a lot of the symptoms of one so for now I'm laying flat in bed and drinking caffeine. That's what you do if you have a leak. I don't know if I do have one, but if I do I'm well.... let's just say it'll be a big problem. The way to find out is an MRI, but right now we don't want to have to move me other then when I absolutely have to. My neurosurgeon and his team just got back from a mission trip to Guatemala so they're kind of crazy over there. We're going to call them tomorrow to see if they have any suggestions for what we should do, or if they think it's something else and what we should do for that! Here's to hoping I start feeling better soon and that my weird symptoms all go away soon!

All my Love ~ The Sic(k) Chick

10 things NOT to do after spine surgery (all of which I've done)

10. Bend
9. Lift
8. Twist
7. Sit up straight
6. Sit up straight for long periods of time
5. Go on bumpy car rides
4. Sublux (partially dislocate) your hip
3. Sublux your knee while walking - you can't bend down to put it back in place
2. Sit on the floor - you can't get up by yourself
1. Faint and twist your back when you land on the hard floor......

California Dreamin'

Home! I'm home! The flight was difficult. Free advice: don't take a long bumpy flight after spine surgery and if you do bring your pain meds 'cuz you're gonna need them! When I got home there were some beautiful balloons waiting for me (thanks Ali <3) along with lots of other cards that I have yet to open. As soon as we got back all I wanted to do was eat something that wasn't airport food! Luckily Mom and I are smart enough to get Dad to have dinner waiting for us since the flight was five and a half hours (and was delayed by an hour too) and the drive from LAX back to Newport is an hour.
Right now I'm sitting in my own bed, in my own room. It is an amazing feeling. Dad is the best and got flowers to put in my room, roses of course (my middle name is Rose), tulips, and gardenias. They are all so pretty and smell really good! My room is upstairs and guess what....I made it up the stairs!!! I was clenching my jaw and muttering explicits most of the time going up, but I did it and that's all that counts. I'm getting stronger but I won't be allowed to BLT (bend, lift, twist) for at least 6 weeks, doing squats to get my clothes off the floor is okay though since I was really worried that my parents would have to do that for me :). I have to be careful for at least 3 months with my back. My neurosurgeon said  "Please just give me three months of good health to let your back heal. I'd prefer six, but with you all bets are off!" He knows me too well.

I miss everyone in Virginia and Maryland so much, but I'm glad to be home! I definitely want to go back sometime for a vacation not a 'medical vacation', but an actual vacation. As much fun as partying in the PICU (go to my mom's blog to see pictures) was, maybe next time we come to town we can go to some museums instead. Thanks to the wonderful staff at VCU for taking such good care of me. And a special thanks to Dr. Tye for being willing to take a chance and do this surgery on me, you've changed my life for the better in so many ways.
Now it's time for bed since I have a long day tomorrow!
Lots of Love ~ The Sic(k) Chick

Showers, Shorts, and other things I've missed

Hi! I got out of the hospital on Saturday and am happy to report that I am walking! I was only supposed to be in the hospital for 4 days, but I don't do things how I'm supposed to. I ended up staying in PICU for 7 days and on the general floor for 2. Fun times - not. The good thing is the nurses in PICU are amazing! They all care so much and that makes a huge difference in my care. Surgically I did great, no spinal fluid leaks, noticed the difference of my strength/feeling in my legs pretty much immediately as expected, and my scar is healing up nicely! Sadly my gastroparesis (slowing down of the GI tract - you digest your food in 20min, I digest mine in 160min) decided to be difficult. I was dry heaving and couldn't keep food down, it got to the point they thought about possibly doing PPN (peripheral parenteral nutrition) it's nutrients but through an IV. I had been poked 10xs for IVs by this point (on my mom's blog you can see the pics of my bruised arms) and they would have had to start a separate line for the PPN since no other meds can go through the same tube. I had two IVs in so that would've the third. Lucky for me my mom suffers from a severe case of JMS (Jewish Mother Syndrome) it's incurable, but at this point it's proved useful that she has it, the symptoms of this syndrome include - major overprotectiveness, the need to make sure everyone is well fed 24/7, the desire to put loved ones in bubble wrap/helmets/any other kind of protective gear, and displaying signs of major germaphobia in airports/malls/any other place a loved one could possibly get ill - at this point there is no treatment, but I'm okay with that. If it were for my mom being the way she is I probably would've ended up on PPN, taking all the wrong meds that made me sicker, and could still possibly be stuck in the hospital. Which would be horrible because, as all of you who were following my mom's blog know, my hair would probably be in dread locks by now.

While in the hospital it's the little things that you miss; the ability to wear actual clothing, having privacy, taking a decent shower (heck you're lucky if you get a shower at all in the hospital!), and washing your hair! I hadn't used shampoo in 9 days while I was in the hospital! My hair was a rat's nest so we kept using a bottle of conditioner and lots of detangler every time we tried to brush it out. We would purposely leave in some of the conditioner so needless to say my hair was gross. As soon as I found out I was getting out my parents asked me what I wanted to do first. Most people say eat a decent meal, that wasn't appealing to me as I was just starting to be able to keep food down at that point, but I said - get my hair done and take an actual shower with actual soap! The hotel we were staying at had a salon in the basement so I got my hair washed and blow dried there and have been enjoying shower's minus the fact of being careful of my back. I have follow ups with my amazing neurosurgeon Dr. Tye on Friday as well as a follow up with a neurologist who was consulting on my case. Overall things are starting to look up especially since I can now wear pants and shorts again! *Hallelujah Music* I fly home on the 20th and I can't wait! By the time we get back Mom and I will have been gone for 5 weeks! Crazy right? I'll keep posting updates on everything going on here, hopefully nothing too eventful will happen.
All my Love ~ The Sic(k) Chick

The Night Before Surgery

Dun-dun-dun.... It's finally here - the night before surgery. Not sure wether that sounds like something from a horror movie or one of those sappy movies where everyone gets a happy ending. I'm going with option number two. I have to wake up at 6 a.m. to take my pills with a small sip of water then we go to the hospital to check in at 8. Surgery is scheduled for 10 a.m. but hospital is almost worse then Granoff time and that's saying something. I have to stop eating an drinking at midnight though, hopefully I'll be asleep by then. Surgery should be about 2-3 hours depending on difficult I make it for them ;) Unfortunately I'll be in PICU for three nights! Not fun.... In PICU I can't receive flowers or plants of any kind. Some people have been asking what to send, or what kind of flowers I lik, so please do not send flowers or if you do wait until I'm out of PICU. I really don't want or need anything though.

I can't say I'm not scared for surgery, but at this point I'm so ready to get it over with that it's weighing out most of the anxiety. Everyone I've talked to have said the worst part of the whole thing is laying flat for 72 hours. Many people have asked how the heck I'm going to do that because I'm never still. All of you who asked that have a valid reason to be concerned. The last time I was still was......well, you get the picture. Like my friend said, the most she's seen me sit for was a half hour episode of Say Yes to the Dress. I would like to point out that I can sit through Dance Moms and all of The Real Housewives which are both hour long shows, thank you very much. Hopefully after the 72 hours are over I'll be up and walking! I'm confident in the team at VCU and know I'm in the best hands possible for this surgery. Thank you for all the positive thoughts and prayers, I appreciate them all.
My mom's blog is listed under my links page, she will most likely be the one blogging for the next few days seeing as I will be out of it. I've given her the password to my blog though so she may update on here too. I've also given her the password to my Facebook account - no guarentees that she'll remember it - so she'll post updates on my page too.
All my Love ~ The Sic(k) Chick
ps-i'll try to blog tomorrow morning but it's probably going to be kind of crazy, in case i don't - bye until post surgery!

Finding Wally, an LBB, and Other Crazy Mommy and Me Things

Today I bought a little black book (the LBB). My primary care doctor wants me to 'journal' my symptoms and how I'm feeling the day before surgery and the day I get out of the hospital. He'd like it if I could do it one day post-op, but I'm probably not going to be up to it. You may ask how I would be able to tell the day after surgery if I'm feeling better, especially since I have to be laying flat which would make anyone not feel well but, all the people I've talked to who have had this surgery have all said 'As soon as I woke up I could tell that this, this, and that symptoms were all gone!'. I hope that happens for me. Tethered Cord surgery is a fairly simple procedure - for a neurosurgeon that is. Dr. Tye mostly does brain surgeries and neck fusions, but he does a fair amount of TC surgery too, so we're confident in him. He said what they'll do is make an incision in my lower back, cut into my bone, then snip the cord! After that they'll stitch my bone back up, stitch me back up, and send me off to PICU (pediatric intensive care unit) for the night! The reason I will be in PICU is not because of anything going wrong, it's just because with some of my other problems better safe then sorry is the way to go. I'll be flat on my back for 72 hours and after that how long I spend in the hospital is up to how I'm feeling. Knowing me I'll lie to everyone, say I'm not hurting and I've never felt better, just to get the heck out of there. Mom and Dad know that I do this, so reading it won't be a shock. Oh, by the way, you can go on my mom's blog (the address is on my links page) and see some pictures!

Now about Finding Wally- anyone who knows us, knows we do lost with the best of them! If Mom and I can find our way somewhere without taking a wrong turn, you should probably call air traffic control to be on the lookout for flying pigs! Everyone has heard of the game 'Find Waldo', it's supposed to keep younger kids (and myself) entertained on road trips and things. Well Mom decided that we should play a game of 'Find Wally', I told her that she meant 'Find Waldo'. She laughed and to cover up her mistake said, "Haven't you heard? Wally is Waldo's unappreciated twin who needs to be found too." Now we're on a mission to find Wally. So if you see him anywhere let us know!
We're moving hotels tomorrow to be closer to the hospital, which means tomorrow morning is going to be filled with packing. We're placing bets on which will be harder; packing our suitcases or loading up the car. If we get everything (including me and the chair) in the car we'll take a picture and post it. We'll drop our stuff off at the new hotel then try to find our way to the airport to pick my Dad up.
Countdown to surgery ~ 2 days (including today!)
All my Love ~ The Sic(k) Chick

PS- thank you to the best friends I could ever ask for; Jamie and Madeline! they sent me a blanket they made with the quote 'setbacks are just setups for comebacks' on it. I love you both Hugs!