Crooked Megs

Update 2011!!!

2011-05-23T13:22:00.002-05:00

I know, I know. I'm a horrible blogger. At one point, sharing my scoliosis journey was so important to me. It filled every part of my life. Now, there are days where I don't even think about it or scoliosis. It's a stark contrast to where I once was. I'm so normal.

Today, a young twenty-something called me to talk about my surgery. She's considering it herself, and our doctor put us in touch. It reminded me again how important it is to share what I've been through, or at the very least, let everyone know how I am today.

Today
I am now 2 years, 4 months post surgery, and life is good. I am very active and love to exercise and run. There are some restraints there. My physical therapist said I shouldn't run more than 6 miles a week (although I plan to ask for a re-evaluation of that someday), but I can walk as much as I want. In fact, I walk most days to and from work, which is 1.3 miles each way. As for my other exercises, I just make adaptions here and there to fit my flexibility and comfort. But they're small changes. I even do P90X, an intense workout program, and yoga.

It's important to stay fit, as the stronger your body is, the easier it is on your back. It's especially important to keep your core muscles strong, as these help hold your spine and take pressure off of it when doing everyday activities. And it's nice to have a medical reason to work on my abs. ;) My PT did say that she would get me a 6-pack someday if I kept up my core exercises. It's definitely not a 6-pack, but I have lost about 25 pounds since my surgery & have some muscle definition. But most importantly, I truly believe exercise & core strengthening is what keeps me largely pain-free today.

Yes, I said it - pain free. Two years ago, when I was in the thick of recovery & I felt pain like I couldn't imagine, this would have seemed like a pipe dream (er...painkiller dream?). I may have a pain rarely, but this is always caused by my actions - when I sit or lay too long in an awkward position or carry something too heavy or do something I know my body can't handle (like a few months ago when I pulled a muscle attempting to do pull-ups) or when I don't keep up with my exercises. (Side note: Dr. Shaun told me to think of my core exercises like brushing my teeth - it's just something you need to do every day.) But there isn't pain just from going about my normal day.

The way I feel physically is only part of the new me. The biggest part is how I feel as a person. I am more confident now than I ever have been in my life. It's amazing when you go through life feeling kind of bad about yourself & how you look and then one day, after a lot of trials & tribulations, you don't feel bad anymore and what that does to you; when you go from feeling less than normal to feeling normal & like you can get through anything life throws at you - It affects ALL aspects of your life. Months after my surgery when I was starting to go out again & get back into life, different people and friends who knew me pre-surgery would tell me - sure, I looked different physically, but I was radiating something that I never had before. I seemed different - good different. It's hard to describe for them or for me.

Today, the twenty-something who called asked me if I would do the surgery again knowing all the pain I went through. Heck yeah. The surgery & recovery were hard. The hardest things I ever went through & I hope to ever go through. But I am so happy now about how I feel & look. If I hadn't have done this, and I was still stuck in that crooked body with that warped self esteem, life would have gone on, but it wouldn't have been as sweet. I wouldn't have been living to my full potential.... What a waste.

Happily,

Megs

P.S. Since I'm not good about checking this thing, if anyone out there finds this blog & needs to get in touch with me, find me at Facebook.com/crookedmegs and send me a message.

My Journal Entries, or More Hydrocodone, Hydromorphone & Skelaxin, Please!

2010-05-24T15:03:00.017-05:00

A one-track mind
You don't have to read each word. Just take a moment and glance at it as you scroll from the top to the bottom.

I'm sure when my mom gave me the journal for me to use during recovery, she probably thought I would use it to write about my thoughts and feelings or any events during that time.

But, as I’ve mentioned before, everything I did was just something to occupy time until my next pill, my next nap or that day when I wouldn’t feel so miserable anymore. Because of all the pills, my brain wouldn't concentrate enough to read or write anything substantial.

With that in mind, here are my journal entries. Notes in brackets & italicized are from me now, not from my journal. Also, I did not change the (mis)spelling or abbreviations that I used in my journal:

Monday at home
[Note: my first day or two at home, I totally over medicated, which I so do NOT recommend. It’s dangerous. At one point, I called my mom to come home from work because I thought I was OD’ing. I had misread the labels on my pills and took too many. It was scary. But it was additionally scary to think that I wasn’t supposed to have all of those pills because I thought that I needed them.]

8:30 p.m.- 2 Dilaudid [aka hyromorphone]
1 spasm [this means a spasm pill- Skelaxin. OMG spasms are the worst pain I’ve ever felt, and I never want to feel them again. I’ll detail them in another post.]
9 p.m.- 2 stool softners
11 p.m.- arm pull [I freaked out because I accidentally in my sleep stretched my arm above my head and was convinced I had broken my back. I was a little paranoid, & my OT had stressed the importance to me of not raising my arms up.]

Tuesday
12:15 a.m.- 2 hydrocodone
2:30 a.m.- 1 Dialdin
4 a.m.- 1 Diladin
6 a.m.- 1 spasm pill [mom wrote some of these notes, including this one, as I couldn’t concentrate some times.]
6:25 a.m.- 2 hydrocodone
8:30- 2 Diladin
10:30/10:40- 2 hydrocodine
12:30 p.m. 2 Diladid

*Modern Living Ethan Allen [no clue why I wrote this]
*Bactroban cream?

2 p.m.- spasm pill
2:30 p.m.-2 Hydrocodine
5:00- 1 Dilaudid [mom wrote this]
6:30- 1 Spasm pill [mom wrote this]
8 p.m.- Hydrocodine
9:30 p.m.- Dilaudid

NIGHT Tuesday to Wednesday
9:30- Dilaudid
11:30- Hydrocodine
2:30- Dilaudid
5 a.m.-Hydrocodine & spasm
7 a.m.- Dilaudid
9 a.m.- Hydrocodine
11 a.m.-Dilaudid & Spasm
1 p.m.-hydrocodine
3 p.m.- Dilaudid
5 p.m.-hydrocodine/spasm

[the following are some notes from when I called the doctor’s office crying to talk to my patent coordinator about dealing with the pain:]

Not uncommon
but does get better
I don’t think I’m hurting like that before

Every 6 hours- Skelaxin
If needed, we’ll add valium

no heat, severed nerves

heating pad w/a timer
or hot water bottle
or dry beans in microwave in pillowcase and heat up

ice is ok, too

need barrier- towel, sheet, pillowcase

1st thing in morning- heat for 20 minutes—increases inflammation

throughout the day—put ice on 10 to 20 minutes
take off
put on

gel packs are best

walking is No. 1 best thing for me
strengthens core muscles

but body will tell me when it’s been overdone it

don’t stop painkillers [Really? She didn’t need to say this to me. You couldn't have paid me to stop. :)]

take over steri-strips as they dissolve [I must have asked her about wound care]

look for new or worsening redness, heat or fluid

can e-mail pics varying angles and lighting

pad it with a towel

7 p.m.- Dilaudid
9 p.m.-Hydrocodine
12 a.m.-Dilaudid and sapasm
2 a.m.-Hydrocodine
4 a.m.-Dilaudid
6 a.m.- Hydrocodone and spasm
8 a.m.-Dilaudid
10 a.m.-Hydrocodone
12 p.m.-Dilaudid/Spasm

• Lap desk [I think I’m writing things I wanted]
• markers
• Sally/Kels [maybe they were coming to visit?]
• oatmeal
• June 6 8 p.m. [must have been thinking about Carra’s at-that-time upcoming wedding] Nanny’s backyard 60 people

2 p.m.- hydrocodone
4 p.m.-Dilaudid
6 p.m.-hydrocodine/spasm
8:00 p.m.- diluadid
10:00 p.m.- hydrocodine
12 a.m.- dilaudid/spasm
2 a.m.- hydrocodine
5 a.m.-dilaudid
6 a.m.-spasm

Friday
7 a.m.-hydrocodone
9 a.m.-dilaudid
11 a.m.-hydrocodone
12 p.m.-spasm
1 p.m.-dilaudid
3 p.m.-hydrocodone
5 p.m.-dilaudid
6 p.m.-spasm
7 p.m.-hydrocodone
9 p.m.-dilaudid
12 a.m.-hydrocodone & spasm
2 a.m.-dilaudid
4 a.m.-hydrocodine
6:20 a.m.-dilaudid/spasm
8:10 a.m.-hydrocodone
10:10 a.m.-dilaudid
12 p.m.-hydrocodane/spasm
2 p.m.-dilaudid
4 p.m.-hydrocodone
6 p.m.-dilaudid/spasm
8 p.m.-hydrocodone
10 p.m.-dilaudid
12:20 p.m.-hydrocodone/spasm
2:10-dilaudid
4 a.m.-hydrocodone
6:15a.m.-dilaudid/spasm
8:15 hydrocodone
10:20 a.m. dilaudid
12:10 p.m. hydrocodone/spasm
2:10 p.m. dilaudid
4:10 p.m. hydrocodone
6:20 p.m.-dilaudid/spasm
8;10 p.m.-hydrocodone
10 p.m. dilaudid
1 a.m.-spasm hydrocodone
3 a.m.- dilaudid
5 a.m.-hydrocodone
7 a.m.-dilaudid & spasm
9 a.m.-hydrocodone
11 a.m.-dilaudid
1 p.m.-hydrocodone/spasm
3 p.m.-dilaudid
5:20 p.m.-hydrocodone
7:10 p.m.-spasm/dilaudid
9 p.m.-hydrocodone
11:40- dilaudid
2:20-hydrocodone/spasm

Tue 27th
4:10 a.m.-dilaudid
6:15 a.m.-hydrocodone
8:10 a.m.- spasm/dilaudid
10:05 a.m.- hydrocodone
12 p.m.-dilaudid
6 p.m.-hydrocodone
8 p.m.-dilaudid/spasm
10 p.m.-hydrocodone
12:30 a.m.-dilaudid
2:15 a.m.-hydrocodone/spasm
4:15 a.m.-dilaudid
6:15 a.m.-hydrocodone
8:10 a.m.-dilaudid/spasm
10:05 a.m.-hydrocodone
12:20 p.m.-dilaudid
2:15 p.m.-hydrocodone/spasm
4:10 p.m.-dilaudid
6:05 p.m.-hydrocodone
8 p.m.-dilaudid/spasm
10:15 p.m.-hydrocodone
1:30 a.m.-dilaudid
2:30 a.m.-spasm
5 a.m.-hydrocodone
7 a.m.-dilaudid
9:15 a.m.-spasm/hydrocodone
11:15- hydrocodone
1:50 p.m.-dilaudid
4:15 p.m.- spasm/hydrocodone
6:30- dilaudid
8:15-hydrocodone
10 p.m.-spasm/dilaudid
12 a.m.-hydrocodone

Friday
2 a.m.-dilaudid
4 a.m.-spasm/hydrocoodine

Friday 1-30-09
6 a.m.-dilaudid
8 a.m.-hydrocodone
10 a.m.-spasm
2 p.m. dilaudid
4:10 p.m. spasm/hydrocodone
6 p.m.-Dilaudid
8:30 p.m.-Hydrocodone
10:15- spasm
12-hydrocodone
2 a.m.-dilaudid

Saturday
4:15 a.m.-spasm/hydrocodone
6:10-dilaudid
8:05 a.m.-hydrocodone
10 a.m.-spasm
12 p.m.-hydrocodone
2:20 p.m.-Dilaudid
*3 p.m.—itchy! [This is one of the annoying parts of recovery. My back would itch like it has never itched before. This was a little because of the pain meds, but also because of all the severed nerves in my back trying to reconnect. It felt like the itchiness was layers and layers underneath my skin, and I could never scratch hard or deep enough to satisfy it. My friends and family who were around me at this time can testify to that. I would have them scratch my back for me, since I couldn’t reach everywhere on my back and was worried I would hurt my incision. The nerves can take about a year to fully reconnect, so, while it was the worst in the beginning, I still would get itchy months and months later.]
4:15 p.m.-spasm/hydrocodone
6:30 p.m.-dilaudid
8:20 p.m.-hydrocodone
10:15 p.m.-spasm
12:10 p.m.-hydrocodone

Sunday
2:25 a.m.-dilaudid
4:36 a.m.-spasm/hydrocodone
6:30 a.m.-dilaudid
8:30 a.m.-hydrocodone
10:30 a.m.-spasm
12:30 p.m.-hydrocodone
3 p.m.-dilaudid
4:40 p.m.-spasm
5 p.m.-hydrocodone
7 p.m.-dilaudid
9:30 p.m.-hydrocodone
10:30 p.m.-spasm
11:20-hydrocodone
1:10 a.m.-dilaudid
3 p.m.-hydrocodone
5:25 a.m.-spasm/dilaudid

Test for Monday 2/2: [Here I tried to make a new schedule for pain meds and would place check marks each time I’d go through the entire cycle. The schedule involved me going through one of the following steps in this order every two hours. It was based on the number of times I could take each pill within a certain amount of time without exceeding my 24-hour limit.]
hydrocodone [5 check marks]
dilaudid [5 check marks]
spasm/hydrocodone [5 check marks]
dilaudid [5 check marks]
hydrocodone [5 check marks]
spasm [5 check marks]
hydrocodone [5 check marks]
dilaudid [4 check marks]
spasm/hydrocodone [4 check marks]
dilaudid [4 check marks]
hydrocodone [4 check marks]
spasm [4 check marks]

Tuesday 3rd
8:30 a.m.-hydrocodone
10:30 a.m.-dilaudid
1 p.m.-spasm/hydrocodone
2:50 p.m.-dilaudid
4:50 p.m.-hydrocodone
7:22 p.m.-spasm
9:15 p.m.-hydrocodone
11:15 p.m.-dilaudid
2:45 a.m.-spasm/hydrocodone
5:30-dilaudid
7:40-hydrocodone
9:45-spasm
11:50-hydrocodone
1:55-dilaudid
4:15-spasm/hydrocodone
6:10-dilaudid
8:50 p.m.-hydrocodone
10:55 p.m.-spasm
1:20 a.m.-hydrocodne
5 a.m.-dilaudid

Wednesday
7:30 a.m.-spasm/hydrocodone
9:55 a.m.-diluadid
12:15 p.m.-hydrocodone
2:10 p.m.-spasm
4:10 p.m.-hydrocodone
7:05-dilaudid
10:47 p.m.-spasm/hydrocodone

Thursday
4:43 a.m.-dilaudid
7:33 a.m.-hydrocodone
10:40 a.m.-spasm
1:00 p.m.-hydrocodone
3:00 p.m.-dilaudid
6 p.m.-spasm/hydrocodone
9 p.m.-dilaudid
1:25 a.m.-hydrocodone
5:30-spasm
8:30-hydrocodone

Friday
11:05 a.m.-dilaudid
4 p.m.-spasm/hydrocodone
7:40 p.m.-dilaudid
11 p.m.-hydrocodone
2:20 a.m.-spasm

Saturday
6:40 a.m.-hydrocodone
9:30 a.m.-dilaudid
12:40 p.m.-spasm/hydrocodone
4:25 p.m.-dilaudid
7:55 p.m.-hydrocodone
9 p.m.-spasm
11:40 p.m.-hydrocodone
4:10 a.m.-dilaudid
8:15 a.m.-spasm/hydrocodone
12:30 p.m.-dilaudid
4:50 p.m.-hydro & spasm
9:35 p.m.- hydrocodone
11:20 p.m.-spasm

Monday
2:45 a.m.-dilaudid
6:35 a.m.-hydrocodone
10:35 a.m.-dilaudid
2:50 p.m.-spasm
5:35 p.m.-hydrocodone
9:15 p.m.-dilaudid

Tuesday
2:42 a.m.-spasm/hydro
8:11 a.m.-dilaudid
1:05 p.m.- hydrocodone
3:05 p.m.-spasm
6:45 p.m.-hydrocodone

Wednesday
3:07 a.m.-hydrocodone
6:10 p.m.-hydrocodone

Thursday
3:45 a.m.-hydrocodone
8:47 a.m.-hydrocodone
5:36 p.m.-hydrocodone

Friday
5:25 a.m.-hydro
12:20 p.m.-hydro
5:30 p.m.-hydro

Saturday
5:11 p.m.-hydro

Sunday
2:50 p.m.-hydro
9:05 p.m.-spasm

Monday
2:25 p.m.-hydro
7:11 p.m.-hydro

Tuesday
9:20 p.m.-hydro

Wednesday
8:12 p.m.-hydro

Thursday
2:04 p.m.-hydro

Done. Kind of.
The journal ends here, Thursday, Feb. 18, 2009 — a little more than a month after my surgery. I did not stop taking pain pills at this point; I just stopped writing about it. By this point, I was able to use my brain a little more and could remember on my own if and when I needed a pill. The last time I took a pain pill was months ago. I took half of a hydrocodone when my back was killing me after working crazy hours for weeks straight. I still have some pills left over and only take if I really, really need it.

But, Man! Look at that list! That is a whole lotta pills. Sometimes I just look at these journal entries and remember not really events that happened when I was recovering, but how I really felt physically and how I used the pills and my scheduling of pills to help me pass the time I was in pain. It's really interesting to me to remember what my life was like during those months of recovery.

Going Home

2010-05-16T14:31:00.006-05:00

Checking Out
The day I was released from the hospital was very busy. In addition to the revolving door of doctors, nurses and technicians that were checking on me throughout the day every day, I had to leave my PCU room to go get back and chest x-rays. A young man came and got me and rolled me in my bed down a maze of hallways and elevators to the x-ray area. My mom went with us. X-rays were no fun, as they involved standing up and moving this way and that. But these x-rays were much less uncomfortable than the x-rays I had been getting in bed each day with the men lifting & rolling me on top of hard film cases.

All my wires and tubes were removed earlier that day, and I was using the restroom on my own. They had started giving me laxatives and slightly more solid foods a day or two before. Once I had my first bowel movement, I’d be a little closer to being allowed to leave. I’ll refrain from going into that, although, there were some new moves I had to learn for this, too.

After my shower and last words from my OT, we began to wait for the paperwork. After much waiting and checking with the nurses, I was finally released.

A lot of people who have fusions have to go straight from the hospital to a rehab facility for another week of more intense PT/OT. My doctors thought I was young and healthy enough that I would be ok just going home. They gave me a long list of do’s and don’ts to follow. The most important thing was to not lie in bed all day. I was to get up and move and walk and sit up as much as possible with short naps in between. The more active I was, the faster my recovery would be. Funny how that works.

The young man who rolled me to my x-rays earlier came back to get me with a wheelchair while my dad pulled the car around. I felt tired and a little overwhelmed at the thought of driving from the hospital to my parents’ home (where I had moved in to, so they could help me during my recovery), almost an hour drive. We put a pillow in the passenger seat to help support my back, and I slowly, carefully climbed into the car the way my OT had explained to me — I leaned up onto the edge of the seat where my back faced the driver’s seat. Then I would kind of push myself up onto the seat and swivel my legs to the left toward the front of the car; then scoot back and get buckled.

I wanted to get home as fast as possible. I was extremely nervous about the drive. I was in pain and wanted to get home, but mostly driving made me very scared. I worried about how badly I would be hurt if we got in a wreck. I worried that my back would snap and the metal rod would go through me, and I would die. I worried that even a little bump by another car & I would be just overcome with pain.

It was very surreal being in the car and out of the hospital for the first time in a week. It’s such a normal thing to be on a drive. But the last time I was in that car, I was in a different body. After a quick stop for meds at a pharmacy en route, we made it home ok.

That’s when the hard part started.

Mom's Journal- the rest of the hospital stay

2010-03-30T13:14:00.003-05:00

Here's more from my mom’s journal:

Saturday, 1-17-09
After a breakfast of chicken broth and Italian Ice at 7:30, Ronnie came in with yogurt and coffee for Mom. :)

While Mom was gone back to the hotel to shower, Ronnie recorded the following…
8:45- doctor came by (insides guy?)
8:57- Pulmonary nurse
9:07- Shawn is going to wean EPA (epidural pain meds) today to half or from 6 to 3 now and then to flat at 6 p.m. Tomorrow she will get oral pain meds.

9:25- Took out some of her hardware.

Megan rested until around 11:30 when the OT came and helped her get up and walk to the sink. She brushed her teeth and washed her face. Then she walked down the hall and back using a walker. When she got back, she sat in a chair for one & a half hours. Then she got up and walked even farther down the hall.

After that, she lay down and slept for almost two hours.

Visitors…
Matt, of course.
Janet
Sheila, Sarah, Bill
Barry and Jayne (with a giant cookie [that I couldn’t/didn’t want to eat…if you know me, you know how crazy it is if I don’t want a cookie]).

Courtney, Don & Kelsey brought pizza, drinks, flower, bathrobe and PJs. She sat up in her chair while they were here.

The night was rough. Mark, her nurse, was helpful bringing pain meds and turning her when she asked and without acting put out.

Sunday, 1-18-09
Megan is “out of sorts” today. She is tired of laying down and of being in pain. She said she is “stir crazy.”

The doctor came and took out her epidural line, which was delivering meds directly to her spine. (No more morphine when she pushed a button.) Today they are working on controlling her pain with the right doses and right kinds of pain medicines.

She was taken on a gurney to have xrays around 9:30 a.m.

When she got back, she just slept. She is sleeping during the day instead of at night.

Shawn (?) with the doctor’s office came in. Said she would get catheter out today. She might get to go home tomorrow.

The PT came in and got her up for a walk around the nurse’s station. Then she sat in a chair and had lunch. When she was done, she got up, walked to the sink, brushed her teeth and washed her face. The PT told us how to take her for a walk. So, Matt, Dad and I walked her around the nurse’s station before she lay down to rest. (1 p.m.)

Her catheter is out, so she is going to the restroom.

Today she walked at least four times. She also sat in a chair to eat. Before bed she walked to the sink and brushed her teeth.

Visitors…
Matt :)
Sheila (brought pretty flowers)

Grandma called
Wendy called

Mom and Dad spent the night. We walked in the middle of the night and sat in a chair (very hard for her to get comfortable). But most of the time she was in bed.

Funny thing — Megan sleeps so much better during the day than at night. She cannot get comfortable at night.

Oh, also, her bed broke, again. This time they found an extra bed and switched with her broken one.

Monday, 1-19-09
Megan got up and walked first thing. She also sat in her chair.

Mom asked the head nurse if she could have something more substantial to eat. The nurse said yes, so Megan had cream of wheat and applesauce for breakfast — no more chicken broth!

We went back downstairs for xrays. (lung xrays)

The PT came in and we went for a walk. She also told Megan how to get in and out of a car.

Then the OT came in and helped Megan take a shower and shampoo her hair.

**Megan can go home later this afternoon. The doctor said to sit up or walk around during the day (except maybe an hour nap in the afternoon). He said to eat lots of fruits, veggies, grains (foods good for digestion). He said to come back in two weeks.**

Went walking a few times during the day.

Ate cream of wheat and pureed fruit for lunch.

3 p.m. – The OT came and helped Meg get dressed in PJs, underwear, socks. She looks beautiful and very tall. [Mom was very shocked about the way I looked and constantly told me how tall and pretty I looked. Still does. :)]

4 p.m. – Went for spine xrays- she is so straight.

5 p.m.- Set to go home. Papers signed. Waiting for transportation- a wheelchair.

6:15- Back at home :)

[That was my mom’s last entry. After that, she gave it to me to use. I’ll post my entries later, which are very funny to me. Thank you, Mom, for doing this for me! This was SUCH a wonderful gift. Now I kind of want some more cream of wheat.]

Preparations and Lessons

2010-03-23T11:25:00.005-05:00

The Sunday after my surgery, I remember Dr. Shaun (from Baylor Scoliosis) coming to check on me. I was so drugged up, I kept falling asleep while he was trying to talk to me about how I was doing. Because of that, he advised that I take less meds. I, of course, differed in that opinion.

Dr. Shaun said it looked like I would get to go home the next day. In preparation for that, they would start removing my tubes and wires one by one until I was all free. As I've said, I had a lot. First, they removed the epidural line, which delivered morphine directly to my spine. I was worried this would hurt, but I barely felt them pull it out. It was a really tiny tube, only about the size of a pencil lead. Unfortunately, this meant I didn’t have that fun little morphine button anymore.

Even THIS is hard to do?!
Later that day, they removed my catheter, and the occupational therapist helped me to the bathroom.

The seat seemed too low, so it was hard to sit down. Wiping was so surprisingly awkward. It’s one of those things that you don’t think about ever. So now I couldn’t bend anymore like I used to. The OT said they could get me an apparatus of some sort to help me reach all my areas, if I found I couldn’t get clean. It took some getting used to and was surprisingly hard to do, but I didn't need the device.

Showering with an audience
My last day, my OT came in to show me how to shower. She was a woman, but honestly, I wouldn’t have cared too much if the OT was a man. They’re professionals, and you just don’t care when you’re in the hospital. You’re in too much pain to care. By the millionth time I asked my nurses (men and women) to make sure my catheter wasn’t kinked or was in there right, I stopped feeling embarrassed. All pride flies out the window when you're in the hospital.

So my mom, my OT and I made our way into the bathroom. It was a walk-in shower with a seat, detachable shower head and a shower curtain. It was so cold in there! The water was fine, but I just remember shaking, I was so cold, possibly due to meds, too. I sat on the seat, and the OT handed me the shower head. She explained how I would need to move to get clean and watched as I did everything on my own. First I would get wet; then use the washcloth and soap to clean. The OT had me (remember I’m sitting) put one foot onto the knee of the other leg, so I could clean my feet and legs better. I know this doesn't sound that hard. But you have to keep in mind, my body wasn't moving normally anywhere anymore. EVERYTHING is connected to your spine in some way or another. The act of putting my foot across my knee pulled on my back. So it wasn't just the stuff that required my back moving that was hard. All parts of my body were stiff and awkward and somewhat pained, as they were all affected by my back, and all in turn affected my back when I tried to move them.

Try it
Washing my hair was the hardest part. I wasn’t allowed to move my elbows above my shoulders. Try this. Try to rub your whole head right now like you would in the shower, and do not move your elbows above your shoulders. Keep them as low as possible. It’s more difficult than you thought, isn’t it? And you probably have full range of motion. I was super tight and every move hurt, so that made it even harder to do. So, I would get my hair wet the best I could with the shower head. Then I’d put the shampoo in my hands, and would try to bend my head toward my shoulder this and that way, while I tried to reach everywhere with my hands up and elbows down. Then I’d rinse and hope I did an OK job.

The OT handed me a towel, and I did my best to dry off. My back and incision had to be lightly patted dry- no rubbing. Then, I had to get dressed for the first time. I had new silky pajamas with a button-up top. The button-up tops were essential in the beginning, as getting on shirts without moving my arms was very, very hard. If you're going in for a fusion, get button up tops!

I sat on the edge of my bed while the OT explained how to put on my underwear. While sitting, I would hold my underwear in one hand and lift one leg up and over the knee on the other leg to get my foot through the leg hole. I would keep holding the underwear while I put that leg down and, leaning slightly forward with my arm, try to step my other leg through the other hole. It was hit and miss, but I got the hang of it. My pants went on the same way. If I dropped them, I had to get help getting them back in my hands, so I could try again. The top was easier to get on. I gave up bras for awhile, as I was worried about the strap rubbing my wound. Socks were the hardest part! My feet were practically impossible to reach. Again while sitting, I would put one leg up across the other, so that my ankle of one leg rested on my knee or thigh of the other. Then I would hold the sock open and try to move my foot into it. Just getting dressed was a trial.

My mom helped me dry my hair. While it was all very tiring and overwhelming to have to learn how to do everything differently then I used to, it felt really good to be clean, in clothes and out of the hospital gown.

I was very impressed with the OTs at Baylor. They were supportive and helpful, but also made me (and this was good) do things by myself, so I would learn. It’s still amazing to me how EVERYTHING changes after this surgery. You just don’t think about it going into the hospital. I never thought that I would have to have someone tell me how to put on socks or wash my hair. Today, I can do all these things normally, except I sometimes look like an old lady trying to tie tennis shoes. It’s harder than you think.

Mom's Journal- Surgery through First Night in PCU

2010-03-15T15:16:00.004-05:00

The week before my surgery, my mother gave me a journal at a surprise party my family threw for me. She would keep it during my surgery and time in the hospital, so I would have a record of what happened. Then, she would give it to me once I was released, and I would start using it.

If any of you have a loved one going in for major surgery and a long hospital stay, this is such an amazing gift. A lot of things I don’t remember very well, but my mom’s journal helps me. Also, after I was released, I used it to keep track of how many pills I was taking and when. I was on so many pain killers, this helped me not forget and overdose.

These are my mother’s journal entries. My notes are in brackets and italicized:

Wednesday, 1-14-09

4 a.m.- Mom braided hair to the best of her abilities

4:45 a.m.- Left for hospital

5:50 a.m.- Checked in and waiting!

6:10 a.m.- Wendy’s here :)

6:20 a.m.- Called into backroom for evaluation — weight, BP (116/69 :)), urine sample, etc. Also, take off all clothes and put on lovely hospital gown. Only one person at this time — she chose her Mom! [Mom was so happy I did this. It was funny. Of course I would pick my mom!]

Nurse came in and asked 100’s of ?s.

Oh now! No elastic bands in OR so the braids have to come out.

7:30- Got IV and met with Anesthesiologist. Everyone (Matt, Dad, Wendy) came into room.

7:35- Dr. Hostin arrived and talked a minute.

7:40 They took her back to surgery — after they gave her some happy meds.

7:45- Now we wait.

8:32- OR Nurse Tracy called and said surgery started at 8:27 and that she is resting comfortably.

10:00- Jayne and Grace came.

10:43- OR Nurse Tracy called and said things had been a “little wild” but they were about halfway through putting in the screws and would call every hour from now on (we had complained to Robin* and she had them call). I should have asked about “wild”. [she underlined “wild” three times.]

*Robin is Guest Services Coordinator.

11:45- Nancy called.

Her next stop after surgery is ICU Room 7. Nurse is Jamie. Charge Nurse is Gustavo.

10:55- Kelsey called.

11:00- Billie Boy asked about Meg.

11:36- OR Nurse Tracy called — all screws are in and now they will start the corrections. Everything is going fine. Two and a half to 3 hours longer.

11:45- Janet called Jayne.

Kelli and Carra have been texting Matt all morning. [I just got a little teary-eyed reading this. I love my friends!]

11:50- Gave Misty an update.

12:40- Francis (Grace’s mom) called Jayne.

12:50- Sheila called Jayne.

1:00- Barry called Jayne.

12:50- OR Nurse Tracy said they are completing instrumentation, then will close her up — about 1 hour. Said Megan is doing good.

1:45- OR Nurse Tracy called. They just finished adjusting her hardware. Now they are irrigating her wound and will start to close. Another hour!

2:15- All done!!!! Dr. Hostin came in. Everything went great. Her bones and spine were a lot stiffer than he thought they would be so that took longer. It was harder to straighten her out. Plus they took some pictures for her. He said we can see her in about 45 minutes. We should head to the third floor in 30 minutes.

2:20- Called Misty. M said Danielle called and said she was praying for Megan.

3:00- Went to see her in ICU (Matt, Wendy, Mom, Dad). She is very pale but looks good. She is coherent and sounds like herself (cute comments). She is in a lot of pain, though. She keeps hitting the morphine button. Dad was also hitting buttons trying to turn on the TV and some sort of alarm went off. The nurse had to come in and fix it. [Classic Dad! Ha!]

5:30 p.m.- Kelsey came to visit.

8:30 p.m.- Mom and Dad went to hotel for the night.

Wendy stayed for awhile. [This meant the world to me.]

Thursday, 1-15-09

Wednesday night was rough! Megan was in a lot of pain and was awake most of the night. Her breathing slowed to 4 times a minute whenever she went to sleep. The nurses and doctors are adjusting her meds and trying to help her feel better. Nurse Donna (a Dorothy type [Dorothy was my paternal grandmother]) helped her a lot. She stayed with Megan and talked to her all night. Megan asked her to say goodbye before she left when her shift was over — but Nurse Donna forgot and didn’t come. Megan is very sad!! [I cried when this happened. I loved my nurses so much.]

8 a.m.- Megan is in a lot of pain (10 on a scale of 1 to 10). She is eating ice chips. Matt, Wendy, Mom and Dad are here.

Thoughts about drugs…

Morphine isn’t all it’s cracked up to be.

Valium and dilaudid are good. :)

Sat up in a chair from 2:20 to 3:20. While up the nurse braided her hair and the OT helped her brush her teeth. Megan was very uncomfortable sitting up — she wasn’t used to her back being straight. When it was time to get back in bed, she got a headache as she stood up. It went away when she lay down. A Physician’s Assistant from the doctor’s office came over night to check on her. He said she is okay and her meds for pain are probably making her lightheaded. He also said that during surgery, Dr. Hostin nicked the covering around the spinal cord. This was repaired in the OR. (Is this why the OR was “a little wild”??)

(Aside: ask about effects of this mishap and will it heal.)

PA said she should lie flat in bed for the rest of day.

4:00- Dr. Hostin came. Said she had a pinprick in the covering around her spine and spinal fluid leaked out during surgery. He said they tried to repair it, but that it might still be leaking. This would cause her headache she had when she stood up. He wants her to lie flat today and all day tomorrow. They will get her up tomorrow afternoon. If she gets a headache, he will get the radiologists to put a plug in her spine to release pressure. This would be like an epidural. If this happens she will be in the hospital 2 to 3 days longer. For now she has to stay in ICU at least another day.

8 p.m.- Kelsey, Rachel and Shantell came.

Dad spent the night.

Friday, 1-16-09

No more stinky Megan! She got a sponge bath this morning. Then we worked on a crossword puzzle. [Working the crossword puzzle was very interesting. I'd pass out mid words and mom would practically spell out all the answers for me. Anything to make me concentrate on anything other than the pain.]

The OT came in and Megan raised her arms and exercised a little — she is still lying flat in bed.

The internist (a doctor) came in and said all her insides were working good.

Uh Oh! The bed stopped working. It became very quiet and Megan’s mattress started to deflate (scary). Several nurses came in and worked on it. It would air up, then deflate. This happened several times. It is working fine now — but that was scary! [This was scary because I was supposed to lay flat and my bed kept sinking down in the middle. Additionally, it was worrisome, as I couldn’t bend at all or move well to prevent myself from falling in the depression it created.]

Some beautiful flowers were delivered, but she can’t have them in ICU. We’ll take them to the hotel later. They are from Oncor. [my work]

2:00- Her bed (the head) was tilted up slightly in preparation for her getting out of bed. So far so good. No headache.

2:30- Jeamy Molina and Catherine Cuellar came and stayed about 10 minutes. [Jeamy told me later that being in the hospital freaked her out & that I looked awful.]

Then Carol called the phone in the waiting room.

3:00- Up and into a chair. She brushed her teeth and her hair. This was hard — sitting up for one hour — but she did it. The best part is…no headache. So, she got the OK to leave ICU for a room in PCU (Progressive Care Unit). Her room number is 331. She won’t get as much attention here (plus it is noisier) but she will be able to start walking and learning how to take care of herself. Then she can go home. Yea!

Misty, Sheila, Erin, Ryan, and Sarah came while Megan was sitting in the chair. Janet came, also.

Kelsey came after work.

7:30- Her temperature is 98.9. The lowest in two days.

Everyone left by 9:00, then it was Megan and Mom. We turned the lights out and tried to sleep…They were coming in and doing things and checking things all night long. They wouldn’t give Megan the pain meds she wanted…said she couldn’t take too much or she would stop breathing.* Plus I thought they were a little rough with Megan and a lot rude. They definitely did not treat her with TLC. One of them emptied her catheter bag in the middle of the night and then couldn’t get it attached back to the bed, so she just laid it on the floor. I had another nurse come to fix it.

Meg finally was sleeping good and about 6 a.m. two technicians came in and woke her up to take x-rays. Megan was so mad!

*The nurse told her “to deal with it” when Megan complained of pain.

[That’s all for now. Mom wrote a lot. I’ll post the rest later.]

Exciting! Pictures of Me Walking! Wait, um...

2010-03-10T19:04:00.033-06:00

Maybe it's not as exciting as I let on. I finally have the pictures from my stay in the hospital. I look pretty awful. Let me say now, for my vanity's sake, I look better than this on most days.

This was on my door in ICU when I was forced to lie flat for 24 hours. As I've said before, it was awfully uncomfortable.

Here I'm sitting in my chair in ICU for either the first or second time. Despite my hand to my mouth, I'm not smoking. I am, however, really high. Morphine'll do that to ya.

Here I am standing up for my first walk. My mom and dad were really excited (that's dad holding the door open). I was not. The belt around my waste held all my wires to me. As I mentioned in another post, I had a whole lotta tubes in and out of me.

On my first walk, two therapists walked with me down the hall and then back- one helping me walk, encouraging me to keep going, and the other moving my IV pole with me, so I could grip the walker. After this first walk, most of my other walks were taken with one or both of my parents helping me.

Finishing up my first walk. It was exhausting! And sweet Jebus! I look awful! It reminds me of one of my favorite moments from the TV series "Friends." Monica looked pretty chunky in an old video of her from high school, and of course the guys were making fun of her. She said, "C'mon guys, the camera adds 10 pounds!" To which Chandler said, "Um, how many cameras are on you?"

Next post: my last day in the hospital.

Oh! Navy is my favorite color! And other drug-induced happenings from PCU.

2010-02-17T15:55:00.004-06:00

Visitors
I had lots of lovely people who visited me while I was in the hospital.

My family, including mom, dad, Wendy, Misty, Erin, Ryan, Sheila, Sarah, Barry, Jayne and Janet all visited multiple times. Friends like Matt and Kelsey were constant fixtures. Other visitors included Courtney, Don, Jeamy, Catherine, Shantell and Rachel. If I’m leaving anyone out, I’m sorry. I was on drugs. I was on a whooooole lotta drugs.

Some things I remember: I remember being really pained and upset during some of the visits. I remember Kelsey holding my hand and kissing my forehead. I remember Jeamy and Catherine standing in the doorway, but I don’t remember talking to them. I remember my mom reading crossword puzzles out loud and me trying to guess words, falling asleep in the middle of trying to talk and her practically spelling them out to get me to figure out the answer.

One of my favorite visits was from Don and Courtney. They brought pizza and soda for my parents and Matt who had been stuck at the hospital with me. They also brought me a present. It was a very soft, navy-colored bathrobe. Instantly, I fell in love with it. I got so excited and gushed (imagine drug-induced gushing with long, drawn out words and half-closed eyes) about how much I loved it and how navy was my favorite color. Courtney still finds this hilarious, as I don’t own one single navy thing and everyone close to me knows my favorite colors are red and purple. But, man! At that moment, I looooooooved navy.

I remember toward the end, I had taken another pill and hit my morphine button quite a few times and just started zoning out. I apparently started talking to people who weren’t in the room with me and then went into drug paranoia when I realized I was talking to people who weren't there and I thought my visitors were all laughing at me, which now from the things they’ve told me I said, they should have been laughing. I started to get uncomfortable, so they left. A little bit later, I had dad throw out all the food they brought, as the smell was making me nauseous.

Which brings me to food
I don’t remember eating in ICU, but I kind of think I might have tried a popsicle on my last day. [Mom, let me know if that's right in the comments.] I definitely started eating again in PCU. As I said in my post last week, everything I would do was about passing time for me. Ordering and eating food was one more means to this end. I don’t remember ever actually wanting to eat, nor do I remember the frequency with which I ate. I’m not sure if I ate three times a day or less.

I would often order broth, mushed up fruit, cream of wheat or popsicles. In the beginning, broth was all I could have, as it is very hard for your digestive system to start operating properly after surgery. Popsicles were my favorite because I could zone out and practically fall asleep while eating them, just feeling them smush up in my mouth as I ground my teeth together (helloooo, drugs). That’s harder to do with broth. [Another question, mom, did you feed me or did I do it myself?]

Here’s the part only the people looking for information on what their hospital stay might be like will want to read, probably:

After every meal in the PCU, I would have to drink Miralax mixed with apple juice. I hadn’t eaten solid foods in almost a week and for some reason they really wanted me to have a bowel movement before I left the hospital. I remember starting to feel really full each day; as Dr. Nguyen warned, there was some distension and bloating. It would be days before a bowel movement would be likely, so they really pumped me full of this Miralax stuff.

Other necessities
My occupational therapist started visiting me in PCU each day to do more than just walk. Now I needed to learn how to take care of myself. My first day there, I had to get out of bed, walk with my walker to the sink and brush my teeth and wash my face. Sounds easy, right?

Except, I didn’t know how to use my arms anymore or bend over or stand right to do these things.

She helped me figure out how I could do this with my new body. For a long time, I wouldn’t have full-range of motion. I would slightly lean more over the sink, barely raise my arms (raising above shoulder height wasn’t allowed and felt bad; the goal is to keep your elbows down for now) and lower my head to try to brush my teeth, and then try to spit or let it dribble down and try to clean it up. Washing my face was a little easier. I just would wet the cloth and kind of lower my head and run the wash cloth over my face with my hand. This was all surprisingly hard and tiring to do. I would do all these things while she watched and gave me pointers on what all I could do to improve.

The most difficult things — learning how to shower, brush my hair, and get dressed — I would learn on my last day in the hospital- Jan. 19, six days after I showed up for surgery, crooked and ready for straightening.

Room 331

2010-02-08T15:44:00.003-06:00

I have a vague memory of the trip from the Intensive Care Unit to the Progressive Care Unit that Friday. I know they are located just across the hall from each other because of the tour of the hospital I took before my surgery. It was a short trip to PCU room 331, but I remember feeling nervous. I felt so awful, how was it possible that I wasn’t ICU material anymore?

In the PCU, the slew of nurses, techs, doctors and therapists continued. I had to keep doing the breathing tests and would still get x-rays every so often.

One Awful Night
My first night in PCU was horrible. This was the only time I came in contact with anyone in the Baylor system who I felt did not care about me or my pain and feelings. During my stay in the hospital, I would often call my nurses to my room for a variety of very necessary reasons — maybe I was in a lot of pain and needed more pills or I just had a pill but was in so much pain I needed help rolling over to another side to try to get comfortable or maybe I was worried my catheter was kinked and needed them to check it or I just needed someone to tell me I was ok and only had a little more time to go ‘til my next pill. Whatever. You just need nurses — good nurses — when you’re in these places.

This first night, the overnight nurses sucked. There were two of them, both women, if I remember correctly. One seemed irritated every time I would call her into my room. My previous nurses always seemed happy to help or at least didn’t make me feel stupid or weak or wrong for asking for the help they are supposed to provide and I needed them for. This is a real need. That night was the first time a nurse not only flat out refused to give me pain meds upon my begging, but also didn’t offer any other help to deal with my pain. One of these nurses even changed my catheter bag and then couldn’t get it hooked back up to the bed, so she just laid it in the middle of the floor and left.

That was the longest night I remember having in the hospital. My mom stayed the night with me that night (my parents took turns staying the night with me each night except the first night in ICU when my sister Wendy stayed with me). I kept trying to sleep through the pain, but I was constantly waking up, calling to my mom and crying with her about how awful it all was.

After that nurse shift, I once again had phenomenal care at Baylor. Thankfully, those awful nurses didn’t treat me again. I even got a fantastic surprise when Nurse Tricia, who as I’ve said multiple times is my favorite nurse ever, got to work in the PCU and take care of me.

Walking
The Occupational Therapists returned when I was in PCU. Of course, they forced me out of bed. But this time I didn’t get to just sit in a chair. I had to learn to walk.

Using a walker and with my OT on one side and parents on the other, I learned how to put one foot in front of the other and start moving. It was hard. It was so, so hard. Every thing you take for granted before scoliosis surgery is a new sensation after it. It felt all wrong and different walking. I remember how happy my parents would get to see me up and moving. Everyone would talk about how tall and straight I looked. I felt it, too. (note: there are pics of me walking, but my mom has them on her computer, so I'll have to post them later.)

During my first walk, I moved from my room down the hallway and back again. It took forever. Baby steps. They asked if I wanted to keep going. Ummmm. No. And I went back to bed exhausted.

Over the next few days, I would walk multiple times. One- because sometimes I was forced to and two- because it helped me pass the time. Passing time feels like dealing with pain. Time is one thing that you just have to get through when you’re in an extreme amount of pain. It’s almost a tangible obstacle you fight against. Anything you can do to get through more time and get closer to that next pill or until that happy day when you don’t feel bad anymore is something worth doing.

Eventually, I would walk several times a day, with my walker and my parents, up the hallway by my room and down three more halls to make the square back to my room. My parents were ridiculously proud of me during these walks. It’s funny because everyone was. Even people I didn’t know. Other PCU scoliosis families would see me, or any patient really, walking down the hall and would stop and smile and give encouragement. They understood. They knew what a struggle this was for me because their loved one was also struggling. They couldn’t do it for me, but they could smile at me or say something encouraging and send me love and that was enough. It chokes me up just to think of these people and their smiles. I want to thank each of them- these wonderful people who I will never see again but who helped me when I needed it so much.

Bad Blogger Recaps ICU

2010-02-02T14:57:00.003-06:00

I’m a bad blogger. I know. Attribute it to pure laziness. My only flaw. :)

A couple of weeks ago I met a woman who reminded me why I need to finish this blog. She was my age and about to go in for surgery. She was very scared & had a lot of questions for me. I did, too, once. If anyone out there is looking for insight into what they face with one of these surgeries, I want to paint every picture I can for them. So I’m going to re-cap everything I can. No promises on how long it will take me to do this or how frequently I’ll post.

Standing up never felt so awful

My second day in the ICU, I was visited by a physical therapist and an occupational therapist. The PT told me something that was about the worst thing I could possibly imagine. He was going to get me out of bed.

Nowadays, after scoliosis surgery, they want you up and moving as much as possible. If you’ve ever had this type of extensive surgery or been hit by a bus before, you know how ludicrous that sounds.

First thing I had to do was “log roll” to the side of the bed. I’d been rolling to one side or the other, with help from the nurses, every so often since I arrived in ICU. It’s one way to deal with the pain. My back would hurt so badly. I could only take so many pain pills or hit the morphine button so many times before I would beg my nurses for help. They’d roll me to my right or left side and tuck pillows all around me to keep me in one position comfortably. Sometimes it worked. Sometimes it didn’t.

Anyway, my PT wanted me to log roll. I rolled onto my left side [wince] then back to my back [ugh] and a little to the right. Then I’d go back and forth, back and forth, until I was on the edge of the bed. I remember thinking, “Like hell, I’m getting out of this bed.”

He then wanted me to try to prop up on my left hand (under me) and place my right hand across my body and near my left shoulder to push up while I swing my legs down off the bed to a seated position. He might as well have told me to somersault.

I kind of tried and nope. Wasn’t going to happen. He started to help. He was doing exactly what he was trained to do and doing nothing wrong, but his help hurt. I sat up, though. I’ll never ever EVER forget what that felt like. You know when you get x-rays and they drape those heavy vests over your shoulders for protection? It felt like I had on about a million of those. My body felt like it gained 200 pounds, and it was all weighted in my back.

Then, half holding onto a walker and half holding onto my PT while he and my parents offered encouragement, I stood up. And the heaviness on my body increased. My head instantly started hurting (as mentioned in another post). I took baby steps, really more like baby slides, to turn myself around and sit in the chair next to my bed.

Imagine someone tying a thick slat of wood to your back- one that runs almost the length of your spine so you couldn’t bend or move hardly at all. Now how would you sit in a chair? For the first time in my life, I had no clue how to sit. They propped pillows behind me, which helped, but I couldn’t relax into them. My body no longer folded appropriately to fit the chair. If you’ve seen me in the past 9 months, you know I can sit in a chair quite normally, with perfect posture, but back then, it was awkward and awful.

I had to sit in the chair for 30 minutes. One good thing came of this. Nurse Tricia, my favorite nurse ever, was there to help. Once I was in the chair, she looked at me and asked if I would like to have my hair brushed. During surgery, some tape had gotten meshed up in my hair. By this point, my hair was ratted and knotted and stuck to the tape. I was a mess. Nurse Tricia got a hair brush and some rubber bands from my mom. Slowly, gently, she picked the tape out of my hair and brushed out all the rats. She didn’t stop there either. She then French braided my hair into two braided tails. It was one of the nicest things anyone ever did for me. It sounds so simple, but it made me feel human and helped me to not feel so freaking awful. Then it was back to bed.

Panic

My surgeon came in a little later. He wanted to talk about the headache I had when I stood up. As Kelsey detailed in that other post, this wasn’t good. For the first time, I heard about the “hiccup” in surgery. Dr. Hostin wanted me to lay flat on my back in bed (no moving side to side or elevating my bed) for 24 hours and then they’d stand me up again. If the headache was still there, they would have to do the epidural blood patch (again, see Kelsey’s post). This did not sound fun.

I was really worried. The look on my mom’s face told me she was worried, too. I was so upset that of all the surgeries, something had to go wrong in mine. Then there was the lying flat. It is terribly hard not to move for an hour, much less a day. I felt so uncomfortable and the pain just started to collect and weigh down on my back and everywhere on my body that touched the bed.

That night (I think it was night, but really I had no sense of time), Kelsey brought Rachel and Shantel to visit me. I don’t remember a whole lot except I was in a pretty bad place when they arrived. I remember them petting me and trying to make me feel better. They brought me gifts. If you are reading this now, girls, it meant the world to me that you came to visit me. I was out of it, not very conversational, but I am so happy you came. Thank you.

Day 3

The next day the OT came back, and we did exercises in bed, which consisted of me moving my arms up and down (not past my shoulders, as this is not allowed). My internist came by and said all my organs seem to be ok after surgery.

My test happened that afternoon. The PT came in to get me out of bed. While still ridiculously uncomfortable to stand up, I didn’t get the headache rush. Everything was going to be ok.

I sat in the chair for an entire hour this time. OMG it sucked. Then, back to bed.

That day they decided I was out of the woods enough to be moved to PCU to recover more and start to learn to walk and take care of myself, all of which will (eventually) be mentioned on here.

UPDATE: Holy crap! This thing is going to cost money!

2009-06-24T14:15:00.005-05:00

Alternate title "Thank you, Jebus, for giving me sweet, sweet insurance."
I paid some bills last week that had been piling up from my surgery. I had yet to pay a bill since my surgery, as I am lazy and poor. After the sixth & final notice ("No, no, really. This is the final. Please, please pay us! No? Ok, we'll send you another notice in a week or two.") from one very persistent medical group, I figured it was time to get it over with.

Now that my checks have cleared, we can add $2,470.62 to the $1,736.01 that I already paid (insurance adjusted down from $6,897.36) before the surgery. What is shockingly amazing to me is how much insurance adjusted. Can you imagine what people who don't have insurance do?! So sad. Here's the breakdown:

Anesthesia bill $411.21 (insurance adjusted down from $4,578)
Pathology lab $108.72 (insurance adjusted down from $747.89)
Additional labs $53.60 (insurance adjusted down from $1,108.80)
Hospital bills (this is the real kicker) $1,897.09 (insurance adjusted down from $179,654.02, as detailed here)

So if I hadn't had insurance, based on the original bills, I would have had to pay $192,986.07!!

$192,986.07!!!!!

This does not count the prescription meds my parents picked up for me when I left the hospital. I still have to get those receipts, pay them back and then add those to the running total.

So the new running total on this whole shabang is $4,206.63.

Who wants to buy me a drink? Seriously. Don't make me beg.

My six month anniversary: a small book

2009-06-16T13:33:00.008-05:00

The half-year mark
Today marks six months since my surgery. It was singularly the biggest event of my life thus far. It's hard to describe how everything is so very different when there's many things that are the same. I can't stop thinking today about everything that has happened. This post is going to be a long one. If this bothers you, bite me. This is all for me today.

I remember that day
I will never forget it, how scared I was. Any excitement that I felt before the surgery day had flown out the window when I was taken to my personal waiting room. I changed into the gown they gave me in the bathroom and looked one last time at myself and was suddenly so, so sure that I was making a huge mistake.

My thought process on this day, six months ago, in that bathroom: Why was I such a whiner before this? I could get through the rest of my life like this, no problem. So many more people have worse things to live with the a crooked spine and hump back. I could die. I could be paralyzed. I could never do the things I love again. I may never see my family again. I just get my mind set on something, and it's full speed ahead. Jesus Christ, what the hell was I thinking?

Thank God for my mother being there, or I would have lost it right there. I remember laying there watching "While You Were Out" on TLC with her. Everything felt so wrong. I cried to the anesthesiologist. Asked him to promise that I wouldn't die. Asked him to promise that I wouldn't feel anything.

Then it was more talking to my surgeon, more questions from the nurses, happy juice from the anesthesiologist and good-byes to my family & friends. It was so surreal. Everything was bright and white and so normal seeming. Normal for everyone around me. I was in panic mode.

Changes that change everything and nothing at the same time
Today, I can finally say this: I'm glad I did this. This is one of the first times I've ever said that out loud. I am glad I did this. [It's crazy how choked up writing this makes me!]

Today, I don't experience the same sort of awful back pain that I once did. I feel like the pain I get now will eventually go away. It's not the stiff, pressurized pain I once felt, and I don't have pains when I breathe anymore either. I just get kind of achy, mostly when I'm sitting incorrectly or I spend too long in one position.

Today, I look different. My back used to be so much bigger than it is now, so much wider. I used to have a hump on my right shoulder blade. My ribs weren't centered and pointed to the right. My shoulder was higher. Now I have a massive scar that I am seriously proud of. It is my battle wound. I look at it, and I feel like a bad ass.

The lesser pain and the way I look are big differences, but there's so many more changes for me. I have a confidence that I have never felt before. I feel normal. I think I look normal. I have never felt like a normal person before. I always thought of myself as deformed. Not many people would think of that when they would see me, I know. But once you knew, you saw it. I always would look at my girlfriends from the side. You could just barely see their shoulder from the back of the arm then straight down to the small of the back. Mine was a giant "S" from the side. Strapless dresses with zippers? Forget about it. They didn't make them fit my type. Seems crazy to be so upset over that, right?

I remember in high school being in a high school pageant. I didn't win. Later, a teacher who was very friendly with my group and happened to be a judge, said I didn't win because I looked so bad in my dress. I still get mad about that. And embarrassed.

The big changes for me are all internal. Going through days and weeks and even months of pain changes you. I feel I look like everyone else, but I feel better about it because I had to fight to get here.

I've heard a lot of people tell me how amazed they are at my recovery and how quickly I've come out of it. I still feel like I'm in recovery a little, and whenever they say this I secretly scream inside that they have no idea what it once was like for me, but I get what they're saying, and I agree. I thought I'd still be struggling a lot more at six months than I actually am. Why would this be better for me?

I'm going with a few different theories on this now that I can look back at things with a little perspective.

One thing, I prepared myself as much as I could. I worked out constantly. I gave up smoking, caffeine, all the list of meds my doc gave to avoid. I saw a massage therapist/energy manipulator the night before my surgery to clear the air, so to say. I joined an online support group to learn more about the experience I'd be going through and get tips on how to survive. I started my blog to get all this shit out of my head. I gave myself two mantras to focus on whenever I needed them (1. I will be ok. My angels will guide me. 2. I plant this hurt in a sea of good thoughts and it floats away.).

Two, "buddha, buddha," as my friends and I call it. I asked my angels to be in the hospital with me to take care of me (Sally, Kelsey's uber-buddhabuddha mom said the surgery room was packed). I prayed to God. I prayed to each of my angels by name. I asked everyone I talked to to pray for me. I blogged for prayers, begging people to pray again. If for nothing else, the praying helped me to concentrate on something, made me feel like I had a small army around me. I truly believe I did, though, especially when I think about all the people out there who were concentrating on me and praying for me. I can't prove it, but I know it to be true. Faith, I guess. (I'm not so skeptical anymore.) I was so ready to give up at times, I knew I needed something much bigger than me to pull me through it.

Three, my support. I've read online about people going home, alone after their surgeries. I am so lucky that I had my family to go home to. My mom and dad were there for me day in and day out, and I will never forget how blessed I am to have them. I don't deserve these parents. Few people deserve the great parents I have. Same goes with the rest of my family and my friends and all the ridiculous amount of love, support and care I received. I'm going to include my surgeon and his staff in this. I am lucky to have one of the best specialists in the world for scoliosis practically in my backyard. The care I received is unreal. My blessings go on and on.

Present day
I'm not 100 percent recovered yet. I go to work, just like before, I just have a better chair to sit in now. I am back to working out, I'm just not ready to dance yet. I can't lift more than 25 pounds, and twisting into some of my old yoga positions seems like a funny joke right now. I look similar, but different. I have kick-ass posture. I get a lot of people telling me just how different I look. Quite a few friends have told me it's deeper than that. I have something inside me that's finally showing on the outside, too. People who really know me have actually said this to me, no lie, which is wonderful because that is how I feel. I'm still me, just better, I think.

One reason I decided to do the surgery was to prevent a lot of bad things from happening to me in the future. I am still scared of bad things but from a different perspective now. I am so happy with where I am today that I now worry about what would happen if I started to go crooked again. What if the rods slip or break (this can happen!) and I have to do this all again? Would I do it all again? I am so happy now. [Wow! I can say that!] I would like to think I would do it all again, but I don't know that I could physically, emotionally, mentally go through this ever again. It makes me so sick to think about. Many people have multiple surgeries for scoliosis over the course of their lives. I pray to God and my angels that this one time will take for me. Fingers officially crossed.

So, with all that off my chest now, happy anniversary to me and to every single one of you who has been with me through this! Six months down! I could have NEVER EVER been able to get through this without so many of you. Once again, to mom, dad, Wendy, Misty, the kids, Matt, Kelsey, the Stroopes, Carra, Monica, Janet, Barry&Jayne, the Pollards, Monette&fam, my Oncor colleagues, everyone who visited me or called me when I was away, to Dr. Hostin and his staff, to my beautiful Baylor nurses: thank you, thank you, thank you! xoxo

Recapping continues: ICU happenings

2009-04-26T18:49:00.008-05:00

I lived in the ICU for three days. If you read Kelsey's post from Jan. 17, you know some of what happened in there.

One more angel
Each day I would have two nurses to take care of me - one during the day and one at night. These nurses were wonderful. One specifically, Nurse Tricia, was so good to me. She was a soft-spoken lady and very pretty. When I would complain about the pain and ask (beg) for help, I felt like she really wanted me to feel better. She was genuinely concerned. One time, the pain was so bad, but she couldn't give me anything; and I was soooo thirsty, but I couldn't have anything to drink either. She found these little spongy stick things, soaked them in water and gave to me to suck on. It wasn't much, but it helped.

This is how much this nurse went above and beyond- on the morning of my third day in ICU, she offered to give me a sponge bath to make me feel more comfortable. She recruited another nurse, and together they cleaned me up. All I had to do was lay there. This was the best part of my entire stay. I felt at least a little bit less sickly.

It is soooo important to have a good nurse. With one exception, which I'll get to in a future post, all of my nurses at Baylor were phenomenal. They made me feel like I was their top priority and like they really wanted to help me feel better. If I needed something, they tried their best to get it. Sometimes that just involved listening to me and consoling me when I was crying and upset, and they did so, no questions asked. These moments cannot be undervalued. Thank you to all my nurse/angels!!

Please, leave me alone
Every day, a slew of technicians, nurses, specialists, doctors, blah, blah, blah, would come to my room to pick at me, move me and make me do an array of things I just did not want to do.

The worst of the bunch were the x-ray techs. Each day, very early in the morning (maybe so visitors wouldn't hear me yell at them?) two of them would come in with a portable x-ray machine. One would stand on each side of my bed. They'd then countdown and lift me up and over using the sheet underneath me while one put a large, hard film case (sorry, I don't know the technical terms) where my back would be. Then they'd roll me back onto it. "OUCH! Ohmygod ohmygod ohmygod hurry!"

They'd take a picture, then lift me again and remove it. I'm sure they're very nice people in real life, but I hated them. Before I realized my dislike, I remember apologizing to one of them for my rank breath. I hadn't brushed my teeth in days and could feel the stench in my mouth. He said it was ok and not to worry. I never apologized for it again.

Just breathe
Another frequent visitor to my room was the respiratory therapist. (Thank you, Kristen, for the explanation of what follows) After surgery, you tend to lay around and not move much, so you begin taking slower, shallower breaths. If you aren't fully expanding your lungs, the tiny air sacs at the base of your lungs could collapse, leading to pneumonia. This is called atelectasis. To combat this, a respiratory therapist would come to my room multiple times throughout the day to do breathing exercises with me.

One of my frequent tests involved using an incentive spirometer. The picture on the left is the same one that I have. Every couple of hours, I would need to breathe on the tube, trying to make the yellow piece on the far left and the white piece in the middle raise up and stay up as long as I could on an inhale. I believe they would want me to do 30 inhales. When I left the hospital, they gave the incentive spirometer to me to use at home.
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Additionally, I would have to do another respiratory test each time with a device that I can't remember what it was called. It had a long clear, plastic balloon on one end. The tech would put some kind of chemical in it, and I would have to breath in and out until the balloon filled all the way up. Then, he or she would remove the balloon and tell me to keep breathing. These exercises were surprisingly hard to do. Now when I blow on my spirometer, I can easily get it to the top. Then, I could barely do it. It was also very easy for me to lose count when trying to get my 30 breaths in or almost fall asleep or get light-headed, another thing I will attribute to all the drugs.
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Then there were the physical and occupational therapists. Oh man. In the spirit of keeping this post from turning into a small novel, I'll blog on them later. Stay tuned!

At least it's good for something

2009-04-17T13:41:00.009-05:00

An interesting turn of events
Last weekend having a gigantic, scary-looking scar finally paid off. I was an extra in my friend Joe Harris' music video/short film called, "The Butcher of San Antone" for the band Tumbledown. I was one of the butcher's casualties.

Score one for the disfigured!

Here's a (poorly taken cell phone) pic of what my scar looks like now, for those of you wondering. It's healing very nicely, if I do say so myself. I've even been told (wink, wink, Matt & Joe) that it's kind of "hot" looking. My thoughts? Tough, sure. Impressive, maybe.

Either way, there's a good chance that I can always win the my-scar-is-bigger-than-yours contest. There are contests, right?

Recap part four: getting settled in the ICU

2009-03-19T08:42:00.023-05:00

The first night

Everything from my hospital stay is pretty hazy, especially the intensive care unit (ICU). Once I arrived in ICU after my six-hour surgery, I remember talking to Kelsey and Matt. Sorry to anyone else that was there. For some reason it seems we were kind of laughing, which seems about right since Kels said I was being quite humorous. I guess I was still feeling the happy drugs from my anesthesiologist. Kels, Matt, mom or anyone else who was there, please feel free to add stories and observations to the comments section about the first time seeing me or talking to me in ICU.

I next remember everyone had left except for my sister Wendy who was sitting in the recliner by my bed watching TV (pic at left is of Wendy in the waiting room during my surgery). She stayed really late until visiting hours were over, or so we thought. We found out the next day that I could have someone stay the night with me in my room, just no in-and-out visitors. I remember feeling very happy that she stayed for so long (thanks, Wendy!). I don't know if it was the drugs or what, but I felt close to everyone who was around me. Which brings me to my nurse.

My nurse on that first night was an older woman. A grandma-type, I'd say. I was so, so thirsty but wasn't allowed to have anything. During surgery, your digestive system shuts down - one reason why you can't eat or drink anything the night before. I didn't realize this fasting would extend after the surgery. I wasn't hungry in the slightest, but man! I was dying for water. My lips felt very chapped and my throat dry.

My nurse offered me a cup of ice chips to placate my thirst. Most of that first night, I was so drugged up that I would sleep and sleep, then wake up and decide that I really needed my nurse. She would spoon feed me ice chips, give me more pain meds and talk to me. She told me about all the surgeries she had after a terrible car accident she was in, which made me feel better to know that she knew how I felt being in the ICU. All of this is really hazy, a la drug-induced conversations, but I remember feeling a range of emotions from happy to scared to needy and every far out place in-between. My nurse was my best friend during this time.

Toward the end of the night, I woke up and pushed the call button just to ask her to say "good-bye" to me when her shift ended. Then I fell asleep (passed out) again and woke up to find her gone. I didn't get a good-bye, and I was very upset. Heartbroken might be a better term. When my mom got to my room early that morning, I cried to her about it. Mom said she sounded like my grandma Dorothy, which is probably why I felt connected to her. I'm leaning more toward the drugs as the reason.

Did I mention I was on drugs?

One of the first things I learned to do upon waking after surgery was use my morphine drip. A nurse put it in my hand and told me to get used to pushing it. I could push it up to a certain number of times every hour. The drip was a long, thin, clear catheter (tube) that was inserted into a small incision in my back. On one end was a button that I would push whenever I was in pain and a small amount of morphine would be released onto my spine. The catheter was only about the width of a pencil lead, which made me think it didn't really help all that much. I never felt a big wave of relief after pushing it. All of my nurses kept reminding me to push it, so I guess it had to work somewhat.

I don't remember the frequency with which I was given drugs in ICU. Every so often, either on their own or as a result of my tears, a nurse would give me drugs through my IV. I have no idea what kind of meds I was given at this point.

In addition to the morphine drip, I had an array of new tubes and pins going in and out of me. Working down from my head, I had a nasal cannula, which you can see wrapped across my face in the picture to the left. A nasal cannula delivers low-flow oxygen and is common to have after surgery to help regulate your breathing. At first when I had the cannula, the flow was a little strong. It reminded me of the air conditioner knobs above your head on an airplane that when you turn you can feel this pressure of air coming out and hear the hiss. Eventually, the nurse realized this and turned it down. I never thought twice about it after that.

Next, I had another central venuous catheter in my chest under my right clavicle. This is a larger IV with three tubes coming out of it that they would use for different reasons like to deliver medicine to me rapidly or take blood from periodically. It was inserted into my chest and taped down, so I wouldn't pull at it. A later post will include a picture of the nasty bloody scab this little tube left.

From there, I had an IV in my arm for fluids. Then, my morphine drip in my back. And last but not least, I had a catheter in my bladder that released into a lovely bag seen at the bottom of my bed in the picture to the left. Every so often my nurse would lift the sheets and check this catheter to make sure I wasn't laying on it wrong or it wasn't twisted. Let me tell you, there is no room for modesty in the hospital. And, for that matter, when you're in pain like I was in pain, you really don't care.

Not to dwell on this specific catheter because I know most of you are thinking "TMI! TMI!" But I had always wondered what this would be like and, if anyone is reading this to prepare for their surgery, they may be as interested as I was in all the little details. When I realized I would be getting this specific catheter, I assumed it would feel really gross like I was always peeing the bed. I actually didn't think twice about it. If it wasn't for the changing of the bag every so often, I would have thought I didn't go to the bathroom once the whole time I was there. There were a couple of times when the tube got kinked or I laid on it wrong when I would realize it was there (it felt kind of like I needed to use the bathroom when this happened), but those times were somewhat rare. I never thought I would be so ok with this, but whenever I was unsure, I would just ask my nurse to check it out for me and up would come my sheets again while she inspected the area to make sure everything was where it should be and draining correctly (once, in the PCU, I even had a male nurse and didn't even blush about him checking on me either...as I said, the more pain, the less shame).

Now the ICU isn't just a nice dark place to rest and recover, which is what I assumed it would be like. I assumed that I would just lay around and sleep and wouldn't be bothered while tests and such were performed on me. My assumptions were a little off. A lot happened for me in the ICU, whether I liked it or not. These and more stories from my hospital stay to come in another blog post. I will post once more within a week to make up for my blog neglect this month.

Friends and family: don't forget to leave observations or stories in the comments section, if you have them, about visiting me in the ICU.

Update: I had someone ask me why I was posting such small pictures. For those of you new to blogger, you can click on the picture to see it larger. Enjoy!

Just a mini update

2009-03-12T09:59:00.003-05:00

Work has been good. I showed up last Wednesday to many warm welcomes. My co-workers decorated my office and gave me a card and gift basket. The boss bought lunch, so the day was wonderful. I take my pillow with me to work to use when sitting long hours in my office chair. Every day someone I don't know makes some kind of crack about me sleeping on the job. Tuesday, it was the security guard shouting at me across the lobby. I don't mind. It is making me consider buying a pillow to just leave in my office, so I don't have to drag mine in each day in front of everyone.

As far as how I physically feel after work, it's not too bad. I get tired and lately my shoulders have been really hurting. Hurting enough for me to take a pain killer when it happens, which I'm trying to cut back on.

I went out with friends for the first time last weekend. It was so much fun, especially since I hadn't been out since the weekend before my Jan. 14th surgery. Even though I've been out now and working again, I'm still trying to take it easy. I get plenty of sleep, rest whenever I can and am careful of how I move.

Next up: another recap from the hospital.

A week of firsts

2009-03-03T18:30:00.009-06:00

This week I felt pretty good. Not normal, but good, considering.

On Friday I...
drove for the first time since Jan. 13.

On Saturday I...
put on makeup for the first time since Jan. 13.
fixed my hair for the first time since Jan. 14.
wore a bra for the first time since Jan. 14. (I was scared to have the back strap rub against my scar, so I put on a tank top first and wore my bra over it on the widest setting to reduce the contact against my incision.)
shaved my legs for the first time since Jan. 14. (Seriously. Not because I didn't want to, but because it was impossible at first and still somewhat hard to reach my legs with these giant rods in my back.)
bought a car on my own for the first time ever in hopes I can go back to work soon. (Mine was wrecked in October.)

Today I...
went to see my surgeon for my second post-op appointment. As of tomorrow, I will be seven weeks post-op. He ok'd me to go back to work, so tomorrow I will start work again. I don't plan on working full days. Not yet. Tomorrow will just be a test day for me to see how I feel. Luckily, I have a super understanding boss and co-workers, and I'm set up with everything I need to work from home. The part about tomorrow that sounds the worst to me is driving from my parents' house, where I've been living since the surgery to enlist their help during my recovery, to Dallas, a 45 minute drive without traffic. Sitting in a car can be uncomfortable for me.

One thing I am looking forward to is using my new bag. I bought a beautiful briefcase on wheels to take to work, so that I don't have to carry my laptop and all my work items in a shoulder bag. I always hated people who used those rolley bags on the bus and train. I would think, "how lazy are they!?" and would be mad at how slow they got off and how they were always in my way. Maybe I misjudged them...

Back to what's important
My doctor's appointment went well today. He said I'm progressing well and my back looks good. We took more x-rays and looked at them together. My left shoulder is still higher than the right (you can tell this by looking at my last x-ray; it looks pretty much the same as the x-rays we took today, so I didn't bother getting a digital copy to put on here), but he thinks this may even out more in time.

Since the last time I saw him, I read his detailed description of my surgery, given to me at my first post-op appointment. In it, I read that a decision was made during surgery to extend the fusion (fusion of the spine and stainless steel rod) down further than anticipated in order to reduce deformity. The incision was extended accordingly. I asked about this today since I hadn't realized before that this had happened. Basically, he said he didn't feel like my curves would be straightened enough without extending the fusion. I have a little bit less movement in my back as a result, but I still do have most of the movement in my lower back. When it's all said and down, my fusion is from the T2 (T is for thoracic) to the L1 (L is for lumbar) vertebrae in my spine. While I would prefer a smaller fusion, I would rather have a straight, deformity-free back, so I've accepted this the best I can.

I asked about when I would feel normal again and wouldn't notice that I have foreign objects in my body. He said that is different for everyone, especially depending upon age. The younger kids he operates on feel pretty good in the first three months. The older adults take longer, many needing a full year or so. I would be somewhere in the middle.

In the meantime, I can do most of my normal activities and should listen to my body when deciding how much to push it. He wants me to be as normal as I can be. As for working out, I can do some cardiovascular activities, but he wants me to hold off on anything too hard until I'm completely off the pain pills. I'm assuming that's so I can listen to my body better than if I'm messed up on pills. I specifically asked about yoga, but that's a no for now.

Before leaving, I signed a consent form to allow other patients to contact me. I want anyone who has questions or just wants to talk to someone who's been through it to be able to call me up and ask away. In my first post-op appointment with Dr. Hostin, he asked me if the pain was what I thought it would be. I told him that it was far worse than I ever imagined. He was surprised at this and said something about me talking to other patients of his, which I never had because I didn't realize I could. I wish he would have offered this to me before my surgery, but that's ok. Bygones.

Crystal ball
My dad drove me to my appointment today. On the way, he asked if I'm happy I've done this. Honestly, right now I'm not sure, and I don't want to say which direction I'm leaning for or against. I think in a year, I'll say "hell yes," or at least I hope so. We'll see.

Recap part three: Jan. 14, surgery (PICTURES, too!!)

2009-02-27T09:38:00.006-06:00

Showtime
I don't remember anything about the surgery (thank God!). As Matt posted in detail earlier, my surgery started at 8:30 a.m., not at 7:30 as we expected, and the first "hourly" update didn't happen until more than two hours later. The nurse said things had been a little "wild." Humph. They didn't tell us 'til much later what wild means, as detailed by Kelsey in her blog post.

My surgery took about six hours, longer than the three or four we were told to expect. My surgeon said this was because my spine was stiff. What's funny is I had been taking BioSil, a supplement to make my bones strong. His assistant said it was ok to take up to the week of surgery, but in retrospect, I probably shouldn't have taken it. Another reason it took so long, he said, was because they took pictures (although he didn't say it, I'm sure the "wildness" added to it!).

Ok. So I have the pictures. I want to post them, but I know it's probably about 50/50 as to whether or not everyone wants to see them. I've decided to put them in a link, so you don't have to see them if you don't want to. If you do want to, copy and paste the following links into your browser. I figured this was the safest way to avoid accidental clicks by people who don't want to see the pics. WARNING... these are GRAPHIC!:

http://i446.photobucket.com/albums/qq187/Megsgolightly5/Scoliosis%20surgery%20Jan14%202009/IMG_0147.jpg

http://i446.photobucket.com/albums/qq187/Megsgolightly5/Scoliosis%20surgery%20Jan14%202009/IMG_0148.jpg

http://i446.photobucket.com/albums/qq187/Megsgolightly5/Scoliosis%20surgery%20Jan14%202009/IMG_0153.jpg

http://i446.photobucket.com/albums/qq187/Megsgolightly5/Scoliosis%20surgery%20Jan14%202009/IMG_0154.jpg

http://i446.photobucket.com/albums/qq187/Megsgolightly5/Scoliosis%20surgery%20Jan14%202009/IMG_0155.jpg

http://i446.photobucket.com/albums/qq187/Megsgolightly5/Scoliosis%20surgery%20Jan14%202009/IMG_0156.jpg

http://i446.photobucket.com/albums/qq187/Megsgolightly5/Scoliosis%20surgery%20Jan14%202009/IMG_0158.jpg

http://i446.photobucket.com/albums/qq187/Megsgolightly5/Scoliosis%20surgery%20Jan14%202009/IMG_0159.jpg

How do I top that?
Next thing I remember is hearing a man's voice (my anesthesiologist?) saying my name really loudly again and again, telling me to wake up. This part is very hazy. I remember bright lights and lots of people doing things around me. The voice told me to do as he said. He put his hand under my foot and told me to "push on the brakes." I had to push my legs and feet against his hands in all these different ways, but I don't remember much except the brakes. This is to check for paralysis, a risk during spinal surgery. I don't remember if they checked my arms or anything else.

Then, they moved me. I remember going in and out at first. I don't remember faces or much, just being in motion and bright lights in the hallways. And I was out again.

Recap part two: Jan. 14, pre-surgery

2009-02-23T10:28:00.007-06:00

Morning
After a mostly sleepless night, I woke up at 3 a.m. on Wednesday, Jan. 14, to get ready to go to the hospital. I took a long shower since I figured it would be a while before my next shower or at least my next time to enjoy showering. I used the Hibiclens, an antiseptic wash that I have been using once day for the last week at doctor's orders, on my chest, abdomen and back. It helps reduce the chances for infection in the operating area. When I got out, I used the Bactroban one last time, which is an ointment I swab once in each nostril, also to reduce infection.

My mother put my hair in two braids, a tip I got from SSO, to keep my hair looking decent in the days to come when I may be moved around quite a bit and not wanting to brush. I threw a few more things in my bag, woke up Matt and tried to get everyone out the door by 4:30 a.m. Of course, we were running late. Thankfully, at that time in the morning, no one is driving, so it took us half the time it usually does to make the drive to Baylor in Plano.

Waiting room
When we got to the hospital, we went straight to the second floor to register. We (my mom, dad, Matt and I; Wendy showed up maybe 20 or 30 minutes after us) were in a large waiting room filled with other people waiting to have surgery and their families. The Guest Services Coordinator Robin walked around checking off the patients' names from a list. Then one by one we were called to a desk to really register. I was given a bracelet with my information on it and signed some papers. I almost cried, but thankfully held it back. At this point, the panic was starting to rise inside of me.

I sat back down with my family, kind of. Every few minutes I would decide I needed to use the ladies room and would go to the closest one. I hadn't eaten or drank anything since midnight the night before (doctor's orders), so this was mostly just my nerves. On one of my trips, a nurse came to get me to take me back, and I wasn't there. He left and said he'd come get me later. Eventually we were in the same place at the same time. He said that I could bring back one person with me for now, and that the rest of my family could come see me once I'm settled in my own pre-op room. I picked my mother, which made her happy. As if I would pick anyone else in this situation!

More testing and waiting
The nurse took my blood pressure, low as always (116/69), weight (I'll keep that one to myself) and gave me a hospital gown and some hose to put on my legs. I was taken to my own room to change and to provide a urine sample. Once I was settled, another nurse came in and asked me a million questions that have already been asked to me a million times before. These people are thorough.

She took more blood and told me that I would need to take the elastic out of my hair. I told her that it was to keep my hair out of the way and that I had asked one of the other nurses about it in a previous appointment and she has said it was ok. This nurse said no. Apparently, elastic is flammeable, and there is some kind of miniscule chance that they may catch fire. Seriously. That was the reason. I took them out and messed up my hair.

She then started my IV. My first one, I think. She told me not to worry that she would numb the area. Yeah, right. She put some numbing cream on it and immediately started to insert the IV with no time between to allow the cream to work. It hurt.

The anesthesiologist came in to talk to me. I asked him my questions about what if I wake up in the middle, is there anyway I would feel it, etc. He gave me all the right answers. Then an OR (operating room) nurse came in to talk to me.

By this point, I'm in the gown, I have an IV in my arm, I have all these doctors and nurses in my room, my dad, Matt and Wendy have come to the room, and I start to panic. I cry. I can't help it. I was so scared! I've been dealing with scoliosis since I was 11, fighting against doctors who wanted to operate until recently, and moving toward surgery for the last six months. It was all about to happen, everything was going to change and I was freaked out.

Dr. Hostin came to talk to me and make sure I was ok. He was very non-chalant about it all. Surgeons are a different breed. It helped me to stop crying.

The anesthesiologist came back to give me happy meds and send me to la la land. I hugged and kissed all my family goodbye and that was all I really remember. I vaguely remember being wheeled away, I think. Next up, my surgery.

Recap part one: Jan. 13

2009-02-19T20:19:00.008-06:00

Excuses, excuses
I know this is a long time coming. I can't even say that I've been busy. No more reasons, let's just get right to it.

Jan. 13--the day before surgery
This day was very busy. I had to go to the hospital with my father to fill out paperwork, have more blood drawn and get chest x-rays taken. After all of that, we walked across the street for my pre-op appointment with my surgeon, Dr. Hostin. I was very nervous. I asked him all the questions I wanted to at that time. For those who were interested, these were his answers at that time:

1. How long will the surgery last? Around three or four hours (actual surgery time was longer...will get to that later)

2. How long will I be in the hospital afterward? He said I would probably be in the hospital four or five days, then go home (this also changed). He didn't think I would need to go to the rehab facility, as he hadn't sent anyone to rehab this year who is under the age of 30. Later in the car on the way home, I realized that this year at that point had only been the last two weeks, but I figured he meant last year.

3. When people go back to work after their month or two off, are they typically able to do full days or not? He said basically that I would probably be off work for six weeks to two months, although I am cleared for two to three months, just in case. He said when I do go back, I may not be able to handle full days. This is a wait and see type thing. He would be the one to ok me for work after we discuss it.

4. Will I be in a brace? If so, for how long? Nope. He thought that with my age, health and because my full back will not be operated on (just most of it), I would not require a brace, although this was also a wait-and-see-type thing.

5. Will I need a cane or a walker? How long? See previous answer.

6. If I am in a brace, how long each day do I need to wear it? See previous answer.

7. How will I sleep? Will I be able to lay on my back at all? He said I'd sleep however felt comfortable. I'll give my answer to this later.

8. My mother's surgeon used bone from her ribs (Mom, is this right?) in her back. Will I need anything like that? No.

9. Will I be able to play soccer or snowboard or other sports and games where I may fall or get hit? Yes, but not for at least three months for most items, and a little longer for contact sports.

10. How long will it take for the hump in my back that I currently have to go away? It will go away, right? Yes, he said he would push this out and move around my ribs and all kinds of cool things, in addition to straightening my spine.

11. How long will it take for the bottom curve to straighten out on its own? I can't remember exactly what he said for this. I know he said that he believes this bottom curve to be compensatory (as we discussed before), so it should straighten out on it's own. We'd have to wait and see.

12. How tall will I be when this is all over? So I had seen a commercial for my doctor's office with a woman who had the same surgery and ended up four inches taller. He said this will not happen for me. That woman had much, much more severe curves than mine and that I would only grow one to two inches.

13. Do I need to give blood prior to surgery? Or can I not, since I'm anemic? I honestly don't know if that's a silly question or not. I didn't ask this because I already knew the answer. I didn't give blood (for them to use in-case I lose too much) prior to surgery, as this is very expensive. They did type my blood, so the bank could be ready in case I needed it. As for the anemia, I've been taking iron and vitamin C at the request of the internal medicine doctor.

14. Will I get a chance to talk with the anesthesiologist before the surgery? Yes, the anesthesiologist would come talk to me just prior to surgery.

15. How long typically before people can exercise again? He said I'd start walking around in the hospital and should continue to go on walks when released. As for heavier activities, see answer to No. 9.

16. How long will I be in constant pain? It's different for everyone, he said. Since I'm young, he didn't think it would be as bad as my mom's. (we'll discuss this later!)

17. What exactly happens in the surgery? He went over this in detail. I think the best answer I can give here is to tell you to watch this video about the spine straightening:

I also have issues with my ribs and kyphosis (hump back) which would be fixed.

18. Will I be in the ICU afterward, like my mother was? Yes, probably for a day or two, he said, depending on what happens.

19. If the second curve doesn't fix itself on its own like you said it will, will I have to have surgery again to fix that one, too? We'd see, but probably no.

20. How much will it approximately cost? (not assuming insurance) He gave me the contact information for the lady in his office who handles insurance and financial things to talk to me, but I ended up never talking to her.

Later that day, I had my massage from Kelsey's friend, who works on people's energies. I wanted to be completely balanced and as relaxed as possible for my surgery. It made me feel like spaghetti, but also kind of worried me. The therapist was very tell-it-like-she-sees-it. She was not a supporter of scoliosis correction surgery. She told me that it would be hard for my body to accept the heavy metal they would be putting in my back, so I could always have problems, possibly even more afterward than before.

I hate it when people tell me this. My chiropractor that I had been seeing since my car accident felt the same way. I felt strong about having surgery, though. I don't think these alternative medicine people understand the surgery or my history. I didn't just decide to do this. It was 15 years in the making. I understand where they are coming from, but this is not something I want to hear when the ball is already way, way in motion.

After the massage, I had dinner at home with my family and Matt. My sister Wendy drove in from Houston to stay the night and be at the hospital, too. She brought me a sweet gift bag with some fuzzy socks that I've been wearing constantly and some other goodies for the hospital and recovery. Monica and Carra stopped by to see me one more time. I stayed up until midnight, really late when you have to leave for the hospital around 4 a.m., doing laundry and deciding what to pack. Matt stayed the night, so he could go with me to the hospital. I knew I'd be nervous and it would help to have him there.

The next day, I would have my surgery.

I wish it did grow on trees

2009-02-07T14:39:00.006-06:00

I should have been a doctor...
...because apparently they are millionaires. I just got an informational list of my expenses from the hospital. It is not a bill. My insurance is being notified of the costs and things will be adjusted before they get back to me with how much I owe. Once that happens, I'll update the running total for how much I am paying.

So before I go further, let's try a little exercise. Think in your head of how much you think the total given to me by the hospital is. It should include the actual surgery, six days and five nights in a room, all the meds I was given while there, x-rays and basically all work done on me while I was there. Think about it. Got your number? Ok, here is the actual total:

wait for it....

wait for it...

$179,654.02!!

Holy shit! I still get shocked when I see that number. It actually makes me laugh. Like a hysterical, non-sensical kind of laugh, but still a laugh. I had no clue it would be that high. I was thinking anywhere from $70k to $90k.

Here's a breakdown for those of you who want to know how exactly that happens:

Surgery: $17,547.86
Central supply: $353.25
IV therapy: $1,514.90
Reference lab: $61.68
Chemistry: $3,073.35
Microbiology: $563.34
Hematology: $1,479.92
Urinalysis/serology: $247.29
Blood bank: $883.63
Lab point of care: $2,422.52
EEG: $7,099.40
Radiology: $3,452.63
Pharmacy: $8,383.87
Anesthesia supplies: $680.45
Anesthesia service: $1,586.46
Cardiopulmonary: $2,911.59
Physical therapy: $1,018.22
Occupational therapy: $879.71
Surgery (I don't know why this is listed twice, but will find out): $119,773.95
Room board: $5,720.00
For a grand total, once again, of $179,654.02

Once again, I do not have to pay that amount (thank goodness) because I have insurance. My insurance will figure out how much I do owe and will get back to me. I never realized how much people without insurance have to pay. Can you imagine if you didn't have insurance and needed some kind of emergency surgery and were in the hospital for days?! It would be awful. This was a real eye opener for me. I am very lucky. Hopefully the insurance will get back to me with a very, very small number. I hope I'm that lucky!

Heavy metal

2009-01-29T16:47:00.009-06:00

Promises

I really want to explain everything that has happened since my surgery. Detail what the hospital was like, talk about my recovery at home, what has shocked me and what it's really like. I am just plain not up for it yet. It's hard for me to concentrate for too long, and the computer screen hurts my eyes, something my oft-splitting head doesn't need.

I promise to give more soon. For now, I will placate you all with my x-rays. Below are a couple of x-rays from prior to the surgery, which I posted on my blog previously, and two of my post-op x-rays.

On these two, you can see the obvious difference of the spine curving on the left and being straight on the right with the help of my two new metal rods and 24 screws.

Additionally, check out my ribs. In the x-ray on the left, my ribs on the left side are spaced really close together and really far apart on the right side. In the x-ray on the right, they are much more even. My surgery not only entailed my surgeon straightening my spine, but he also worked to push my ribs back to a centered position. My ribs used to point towards the right, which caused a "rib hump" on the left-side of my ribs. He was able to correct my hump without cutting or removing any ribs, a common correction technique.

Additionally, Dr. Hostin corrected my kyphosis (he pushed out the large hump I had on the upper right-side of my back). You can see it in these x-rays, if you look at the actual spine, located in a bit from where the back's exterior starts.

Crooked Megs ain't so crooked anymore, huh?

Turning corners

2009-01-22T16:31:00.002-06:00

Better, but not ok
Thank you all for your support. I don't want this to sound cliche. I really feel, possibly for the first time in my life, the power of prayer and support of angels, both here and away.

I've turned a corner. This is now somewhat bearable. Yesterday, I only cried once, when getting advice from Kelsey, who was wonderful as always. I e-mailed both my patient coordinators for help. One called me back very quickly (the other knew it was being handled). She gave me wonderful advice on tips to get through this and upped my timing for when I can take my spasm meds, as the spasms were causing me the most anguish.

Yesterday was soooo much better. Today, even more so. I am still not out of the woods, but I now know that this is a journey that I will navigate.

Thank you for everything. Here's me being greedy....please keep the positive energy, good thoughts and prayers coming. I can feel them!!

P.S. When I went to one of Kelsey's BuddhaBuddha ladies for a massage the night before my operation, I saw this on a post-it note on her bathroom mirror. It helps me now. One more of those small miracles I am thanking God daily for:

I plant this hurt in a sea of good thoughts and it floats away!

xoxo

My own temporary update

2009-01-20T13:31:00.003-06:00

I know you all want an update.

Know that I am doing as (doctor's) planned.

I am now at home with my parents. I don't/can't blog long.

This is the most painful experience of my life. I hate to be sour, but this has been and continues to be the worst experience of my life.

Please don't visit me right now. Let me get throught this state and I'll post again.

I request that you ALL pray for me. Send me thoughts and pray to God or whoever you pray to to help me throught this pain. It is consuming and not one bit what I thought it would be like. I know now why my mom says she doesn't remember this part of her surgery/recovery. She's probably blocked it out. I think prayer is the only thing that really works now.

So so sorry to do this to y'all.

xoxo

Megs

1/16/2009

2009-01-16T16:15:00.001-06:00

There was a small hiccup in Megan’s recovery yesterday which may cause her to stay in ICU an extra day, but the good news is they won’t need to go back in and she’ll still have a full recovery. During surgery they accidental nicked the meninges (not sure that’s the correct name but it’s the sack that covers the brain and spinal cord) causing her to leak cerebrospinal fluid. Online I’ve also seen it called a dural puncture which can be a complication of spinal anesthesia, diagnostic spinal puncture, or epidural anesthesia. They patched it up during surgery and thought it would be okay.

When Megan stood up for the first time yesterday she got in instant headache. This is an indicator that she is still leaking fluid. They are going to get her up again today to see if she has the same issue. If she does they will do an epidural blood patch. An epidural blood patch is an injection of your blood (taken from your arm) into the epidural space. The epidural space is not an injection into the spinal cord itself. The spinal cord and spinal nerves are in a “sack” containing clear fluid (cerebrospinal fluid). The area outside this “sack” is called the epidural space. From my understanding the blood patch works as a gelatinous-glue which prevents fluid leakage and allows the hole to heal. Kristen explained that the blood clots, which forms a plug or “patches” the menigeal leak. She should have immediate relief from the patch due to an increase in cerebrospinal fluid pressure (the headache is caused by the deceased pressure).

Little detailed but I wanted you guys to know what was going on. The good news this is only a very small complication. She might need to stay an extra to be observed but she’ll still have a full recovery. We just need to keep Megs positive and not get bogged down in this small set back. She appreciates all the love and support you are all providing. She says, “keep it comin’!”

The Day After Yesterday (01/15/2009)

2009-01-15T10:44:00.004-06:00

Hello,
This is Matt P, Megan's other half....not the good half either. :) I'll be writing this blog for Megan for just a day or two.

First of all, the OPERATION WENT GREAT!!!!!!!!!!!! And now I can get into the details.

Wednesday 01/14/2009

3:45AM - We (Megan, me & her Mom & Dad) get up from only a few hours sleep

4AM - Sharon (Megan's mom) braided her hair, as was a tip (to keep her hair from going crazy) from an online friend of Megan's who had the surgery before. She actually had to end up taking the braid out before the operation (doctor's orders!)

5:50AM - We finally arrive at the hospital (about a 45 minute drive), check in and wait.

6:10AM - Wendy (Megan's sister) arrives and shortly after Megan is called into the back where she gets evaluated (weight, blood pressure) and gets prepped for the surgery. As only one person was allowed to go with her to be prepped, she of course chose her mom.

7:30AM - Me, Wendy & Ron (Megan's dad) are allowed to see Megan for a few minutes before the surgery. When we got in she was already hooked up to an IV and they were giving her her first dose of "the good stuff". Then her doctor (Dr. Hostin) came up and discussed the surgery with all of us. He was in a wonderful mood lifting every ones spirits up and he was very confident about the surgery.

7:45AM - Now we are all waiting in are own personal waiting room, thinking the surgery has already begun. They told us that they would update us with a phone call every hour.

8:30AM - We get our first call and they tell us that Megan is resting comfortably and that they just started. We were told earlier that the operation should take anywhere between 4 and 5 hours. So we are looking at about 1:00PM when her surgery should be done.

10AM - Megan's aunt Jayne & lovely baby Grace came to wait with us. Ive never seen a more relaxed baby than Grace. She did not cry once. It has been over an hour now and nobody has called us yet! We are getting worried!

10:45AM - We finally get a call from nurse Tracy. She apologizes for not calling and says that things have been "a little wild in here" and that they are about half way done putting in the screws and would make sure and call every hour from now, on the dot. She said it was going smoothly but...what in the heckfire does "a little wild in here" mean anyway!? That's not a good choice of words IMO.

Over the next few hours a slew of people have been calling every one's phone asking about our Megan. :Kelsey, my mother, Billie Boy, Carra, Kelli, Joe, Danielle, Aunt Sheila, Janet, Barry, Misty and I'm sure I am forgetting some. (Sorry!)
Also, the Guest Services coordinator, Robyn, has been a big help to all of us. She has been answering every question we could possibly have and ones we didn't even think to ask. Thanks Robyn!

11:36AM - Nurse Tracy calls again and says everything is still going smoothly and that they have all the screws in and will now start tightening the screws and making the adjustments. She also informs us that it still might be another 3 hours before they are done, just making it a little over what was expected.

It sure is hard to kill time in a situation like this. Everyone is trying to do something besides worry. Sharon is trying crosswords, I try a little to read (but end up reading the same page about 10 times before I even realize it), then we got Ron breaking the tension with humor every so often. Something about a stolen rubber glove blown up at random times throughout the day by Ron sure is a comic relief!

12:50PM - We get the hourly informative call from Tracy saying that they are finishing up adjusting her new hardware and that they should be finished shortly.

1:45PM - Tracy calls for a final time saying that they are irrigating her wound and are starting the process of closing her up.

AND 2:15PM - All DONE!!!!!!!! Dr. Hostin (the main surgeon) came in and said it was a complete success. He told us that Megan's spine was a lot stiffer then he thought and that is why it took a little longer than expected, but that she is almost 100% straight in her back! It also took a little longer because Megan wanted to get some pics of her while in surgery. That's so Megan of her to want pics of that!

Relief!!! We get to go see her in about an hour!, as they have to make sure she is doing OK and get her ready for ICU.

3PM - We finally go upstairs to the ICU and get to see her. She is so pale! but looks good. They told us that they did not have to do any transfusions or anything like that, so that's a relief. She has tons of IVs in her, hooked up to oxygen and has lots of other futuristic computers around her. She is much more coherent than any of us expected and was even being witty! Though in tremendous pain she understands what just happened and start to fall in love with the Morphine button! Ron, trying to turn on the TV, hits some button that makes alarms sound, we all start to freak out...but the nurses came and fixed it and said it was nothing. Ha!

Kelsey comes to visit around 5:30PM and we all hang out till visiting hours are over at 8PM. Kelsey was a great influence on all of us.

Good night Megan! We all Love you!

Thursday 01/15/2009

8:20AM - I arrive to find out that Megan had a pretty rough night. :( She was in a lot of pain and was awake most of the night. Her breathing even slowed to 4 times a minute whenever she did fall asleep, but they said she will be OK. Megan said her nurse for the night (Donna) was a great help for her time in need and spent most of the night by her side. But she forgot to say goodbye to her when her shift was done and she said she would. But we forgive you! Thanks for being there for her when we could not.

Megan, today is doing much better than yesterday. She has her color back in her face and is getting to eat ice chips and even drink some iced tea! Doctors come in every hour or so and X-ray her and such. It causes her a lot of pain, but she understands that it must be done and she is so strong!

We love You Megan!

Be back shortly.....I've been rambling to long and now I need to see her.
Sorry for the lack of Thesaurus skills, Megan will be writing on here again in a few days, so the writing will be up to par from what you have come to expect.

Matt P

Here we go!

2009-01-13T21:47:00.005-06:00

This is weird
I feel strange. After a very intense massage (thank you, Kelsey, for the wonderful gift!), I felt weightless and honestly a little high. Now, I'm feeling absolutely beat. I still have to finish my laundry and pack. Then, off to bed to get probably very little sleep.

My schedule
12 a.m. no more food or drinks.
3 a.m. wake up, take long shower since I don't know when my next one will be; use Hibiclens soap (it's an antiseptic I've been using since Friday on doctor's orders to kill bacteria), no other soaps and no lotions.
4 a.m. mom will french braid my hair. I got this tip on SSO. You braid your hair before surgery, so that you don't get a big bad 'fro when they move you from bed to bed.
4:30 a.m. we'll leave for the hospital in Plano.
5:30 a.m. check in at the hospital.
7:30 a.m. surgery starts.

It's really strange to me right now. Since I was 12 years old and was first diagnosed, I've tried to avoid surgery. Then, since September, I've been counting down to tomorrow, both looking forward and dreading it. Now it's here. I'm not sure how I feel about that.

Things I'm looking forward to

Being at least a little bit taller
My chest evening out :)
No more back hump
No more rib hump
Being smaller around my chest/back
No more pain when I wake up in the morning or at night
No more pain when I take a deep breath
Getting this out of the way when I'm young and healthy
Not turning into a humped-back, hunched-over old lady.

Things I'm not looking forward to

Getting an IV
Having a catheter
Being put to sleep
Pain after surgery
Getting around
Not being able to do everything I want to do
Missing out on things

FYI
Tomorrow through at least Saturday, I'll be at:
Baylor Medical Center at Plano
4700 Alliance Blvd.
Plano, TX

I can have visitors right away after surgery, just no one under 12 during my first day or two that I am in ICU. After that, all welcome.

My surgeon doesn't think I'll need to go to the rehab facility after my hospital stint, like I had thought. He said he hasn't sent anyone under 30 there this year, so that's good. It would be nice to just go home.

If you need to know my parents' address, just leave me a message on here. If you want an update, feel free to call Matt or my parents. If you don't need a personal update, just check on here. Matt and/or my mother will be posting blogs for me until I am able. I promise that they will post at least once tomorrow. So check back often.

To my angels
Thank you all so, so much for all the love and support you have shown me--on here, in text messages, in person and all ways. I feel all the good vibes y'all are sending me! Please, please keep the prayers coming.

See you soon!

xoxo

Parties, pep talks and buddha, buddha

2009-01-13T16:46:00.011-06:00

Best. Weekend. Ever.
So I just wanted to say a big HUGE "thank you" to every one who made my pre-op weekend so special. Friday night I hung out with some of my closest girlfriends to release some of my pre-surgery jitters. I think I got pretty relaxed there, hey ladies? :)

On Saturday, Matt and I had a lovely date night, which included a trip to Borders to buy a Debussy CD to help me relax during recovery. Then on Sunday, I woke up and drove home to meet my mom for a nail appointment. When I walked in the door, all of a sudden.....

"Surprise!"

My family had thrown me a surprise party! My sister Misty was behind it all, coming up with the surprise idea, suggesting we have brunch (my favorite meal!) and inviting the whole family over. It was absolutely wonderful. I've never had a surprise party before! I was so shocked, I didn't know what to do. We ate a lot of wonderful food, drank mimosas and hibiscuses and opened presents. That's right....presents.

I received PJ's, books, crossword puzzles, sudoku, brain teasers, a towel and washcloth set for the hospital, a journal and a trash bag of gifts from my Aunt Monette. I love each and every thing I got. The trash bag was super creative and sweet. 'Nette wrapped a ton of small gifts and filled the bag with them. I get to unwrap one every day while I'm recovering. Pretty cool, huh?

So, as I said, it was the best weekend ever.

Last day at work--surprisingly sad
You would think that getting a few months off of work would be exciting. It is actually extremely stressful. My last month, especially the last two weeks, have been very stressful. I tried my best to wrap up what projects I could and leave behind materials for my colleagues to use in my absence for my on-going projects.

Yesterday was my official last day for the next two to three months. My colleagues had a German chocolate cake made especially for me. Chocolate...they know me so well.

I was so intent on getting things somewhat squared away, I was up there til late in the night. It was sad to leave, actually. My friend and co-worker Jeamy and I had dinner and drinks afterward, so that helped. :)

Pep talk
Also yesterday, I received a call from Sally, my friend Kelsey's mom. Sally gave me probably the best pep talk ever. Kels told her I had been freaking out. She called me to talk about how she could help and ended up helping me turn a corner.

She asked me what my biggest fear is. I told her that I think it is falling asleep and not waking up again after my surgery. She explained that that will not happen unless I choose for it to happen. The best thing possible that I can do for myself is to be positive and ask my angels (both those here on earth like my friends and family and those who have already passes) to help me make it through this safely.

There were lots of other things said. She promised to take care of me in her own way and send me good vibes. This morning, I woke up smiling. I've felt great all day. I'm not scared. At least not right now. All that "buddha, buddha" is working!

My own mantra
Kelsey also helped me in another way yesterday. She helped me figure out my mantra. A mantra is basically something you repeat to quiet your mind, focus on and create a positive energy. I will say my mantra to myself again and again and focus on it whenever I feel freaked out or need a little support.

I combined a couple of her suggestions. My mantra is:

I will be ok. My angels will guide me.

All I want out of this is to be ok. I don't want to end up any worse than I already am. But sometimes I don't think I can do this on my own, so I've asked my angels for help. My mantra will help me to be positive and have faith.

Far out, huh? ;-)

Only six more days! Are we panicking yet?

2009-01-08T09:48:00.005-06:00

Countdown commenced

Yesterday, I was officially one week away from surgery. I cannot believe that I am doing this. I'm to the point lately where it's a 50/50 shot that I could get emotional when asked about it. At dinner with Matt last night, I started to ask him if he would stay the night at my parents' house with me the night before since I have to be at the hospital super early and then had to stop because I felt tears coming.

The worst part is when people ask you about it or how you're doing, you answer and then they stare at you nodding their heads with a puppy dog look plastered across their faces waiting for you to say something else about how awful the ordeal is. I get it. They're being kind and concerned. But the moment I see that look, I get freaked out. I don't know what to say. And then the tears start to well up.

They don't start in the eyes, either. That's a common misconception. Real, emotion starts in the stomach. "Gut wrenching" is the term. That's where I start fighting it. I feel all this shakiness there and it creeps up quickly to my throat (hello, frog) and then my head starts to feel a little light and my eyes start to water. I try to think about something else--people naked sometimes works, as it can shock me out of the emotion. Or I bite a small piece on the inside of my lip, where no one can tell what I'm doing and it really hurts because its such a tiny bit. Or I dig my fingernails into my palms. If I can focus on that, I'll be ok.

At the same time, I want people to ask me about it and talk to me. Ignoring it is the worst. I guess its best to just ask me about it matter-of-factly. Don't try to elicit emotion from me. If I do get emotional of my own accord, that's fine. Hey, as I said, it's a 50/50 shot these days.

More preparations

I took two more steps yesterday. First, I went to get my medical clearance from Dr. Nguyen. He's my doctor of internal medicine. While Dr. Hostin will be taking care of my spine, body movements, etc., Dr. Nguyen will be making sure I'm doing ok internally with my major organs and other body systems.

We started off with an EKG to test my heart strength at rest. I laid on a table topless but with an open paper robe on while the nurse stuck multiple electrodes to my chest and arms. I was nervous because they told me not to use lotion that day as it may make the electrodes slip, and of course I forgot and used lotion that morning all over me. But it all worked out.

Next, Dr. Nguyen came in and talked to me about all my medical history. He was pissed about the poor care my mom received after her surgery. For those of you who don't know, my mom had the surgery around eight years ago. Her surgeon moved to California a week later, leaving her to fend for herself.

He said I'm receiving some of the best care in the country. Apparently, and keep in mind that Dr. Nguyen does not work for my surgeon, people come in from all around the nation to have Dr. Hostin and his partner Dr. Shelokov do their back surgeries, and I have them in my backyard. Hey, it impressed me.

Dr. Nguyen went over details about what may happen to my body after surgery. I may not have a period for a few months as my body will be shocked from the surgery. I will probably swell up a lot in the days after surgery since they will be pumping me full of fluids. He said I may look pregnant. Trust me, that's not an appealing thing to me. So the first one to two weeks, I may gain weight from fluids and then will start to lose it--a lot. Not a good thing, he said. I'll lose most of my muscle and a lot of fat because I won't want to eat. I'll be too sick. I know this should bother me, but the thought of being really skinny made me smile just a little bit. (Save your judgements!)

He may give me insulin to control my metabolism and electrolytes to help balance my body's chemistry. Minor conditions I may have include: bladder infection, diarrhea, nausea, distension (that's the looking swollen thing) and bloating, rashes and possibly even pneumonia. When he got to the serious conditions, he talked really slowly, so I could write them all down. The serious complications could involve blood clots (which is why I had to stop birth control last week and can't start it again for three months as birth control can cause blood clots, as can surgery, so we don't want two things working against us), severe bleeding (which may make my anemia worse), low blood count, infection (this would be AWFUL because if my back gets infected, they'll have to do another surgery to clean me out), ileus, abnormal heart rhythm, heart attack, stroke, kidney failure, liver failure, heart failure, a bad allergic reaction to a drug, a reaction to a blood transfusion, seizures or even death.

Don't fret. Most of the serious ones are rare, and he doesn't think any of them will be a problem for me since I'm young and healthy. He said whenever he thinks those might be a problem, he cancels the surgery. It pisses people off, but it may save their lives.

He told me to take vitamin c and iron until my surgery to fight my anemia and told me he'd see me at the hospital next week. One good note, I didn't have to pay anything while there.

MRI adventures

I then drove to the hospital for an MRI. An MRI (Magnetic Resonance Imaging) will show a more detailed picture of my back than just an x-ray. The doctors will be able to see all the muscles and tissues and other things in there, so they'll be better able to plan my surgery.

I had to pay $1,379.47 up front, and they gave me a wristband to wear. A lady (I'm not sure if she was a nurse, doctor or tech) took me to another area and then a little closet-like room with a curtain for a door. I had to take off all of my jewelry and all my clothes, except for my panties and socks. I put on two paper gowns, one open to the front and one open to the back, and a pair of paper socks (more like hair nets for your feet).

She then took me to the MRI room. She kept paying me compliments and being super sweet, as was the guy doctor/tech who was running the show when we got in there. I knew they were trying to help me relax, but I still liked it. I put in ear plugs and laid down on a table in front of the machine. The put pads around my head, sides and under my legs. I was given a panic button to hold, in case I needed assistance. Then, the best part, they draped a very warm blanket over me and tucked me in on all sides. They said to try to go to sleep, don't move and relax. I thought, "yeah, right."

You should see this machine. I'll include a pic from the web of what one looks like. They push you into it's circular hole and you are surrounded on all sides by it with very little space between you and it. I can see why people panic. It was kind of like going into a spaceship or a birth canal, I would think. Maybe a robotic birth canal? I digress...

They push me up and down this tube for the next 45 minutes while all these loud sounds spin all around me. I kept my eyes closed to try to forget about it. Thankfully, I was sleep deprived from work, so I eventually did fall asleep. Every so often, the noises would stop and the guy's voice would come in very faint in the background and ask if I was ok. Eventually, it was over. They pulled me out, I dressed and off I went.

All and all, not too bad. Next step will be tomorrow when I start using a special cleanser everyday to help reduce infection and bacteria.

Happy New Year! a (long) update on this week

2009-01-01T22:04:00.005-06:00

Hello, 2009.
This year will be a big one for me. I'm undergoing a journey that will certainly change my life for the next year, the ramifications of which will possibly change my life forever. In less than two weeks, I take a big step--surgery to correct my scoliosis. It will be a new year and a new me. This week, I took a couple more little steps toward this big one.

Baylor Regional Medical Center at Plano
I signed myself up for an optional tour of the hospital where I will be having my surgery. I figured that it might make me feel more comfortable with everything if I knew my surroundings. Staying overnight in a hospital was one of the things that sounded a little scary to me. My doctor's office coordinated it for me, so that the hospital's nurse navigator would know exactly what parts of the hospital would be most important to me.

Monday afternoon, my parents and I drove to Baylor Regional Medical Center at Plano. Once inside, the nurse navigator, a cheerful, wonderfully helpful woman named Betsy, showed us around. Our first stop was to the physical therapy offices to meet some of the people in there who I would be working with.

Physical/Occupational Therapy
I met the occupational therapist who would help me. The physical therapist wasn't there. Basically, the occupational therapist will help me learn to do everyday-type activities, while the physical therapist will help me with more physical activities, like walking and moving.

My OT gave me a rundown of what my time mostly likely will be like with her. On my first day after surgery, I'll sit up for the first time in a chair for about an hour. I also might practice feeding myself ice chips, brushing my teeth or wiping my face with a washcloth. I know--it sounds like child's play, but it will be hard for me to do. She said I will probably not be able to lift my arms very high, maybe to my shoulders, for the next six to eight weeks.

On my second day after surgery, I will sit in the chair once in the morning and once in the afternoon. If I'm doing well, I may even try walking. From this point to the end of my stay, probably around four or five days before I'm transferred to rehab, I will eventually walk to and use the bathroom and will learn to take a shower again at least once. I didn't ask her this (I know I should have), but I wonder what that is like. Will she just stand outside of the shower, making sure I don't keel over or will she be in there with me in some sort of heavy duty raincoat? That will be a little surprise for me, I guess.

ICU/PCU and other places of interest
From there, Nurse Betsy took us to talk to the guest services manager, who will be checking on me and my family to make sure we're getting settled. She gave my parents info on nearby hotels and discounts there. Everyone we had met was super, super friendly, and each one just couldn't wait to bend over backward to help us. I always thought hospitals to be sterile, unfriendly places, but not here.

On the third floor, I saw where I will go to await surgery--a wing they call "Day Surgery," whether that's what you're having or not. Once here, I'll change into a gown, put on leggings that will help prevent blood clots and will "relax" in bed. I'll get to meet my anesthesiologist here, too, and some nurses. They'll give me my first IV in my arm, with a numbing solution, they promised. Then, once I get some happy juice in me and drift off to la-la land, they'll add two more IVs, one in my neck and one in my wrist, and I'll get a lovely catheter in my bladder.

That's not all the tubes, ladies and gentlemen. Once wheeled off to surgery (on floor two, for those of you keeping up), I'll get a little hole in my esophagus with a tube for breathing. After my surgery is done (surgery details to come in a future post), I'll get a tube in my back where blood and fluids will drain. Then, they'll wheel me to the Intensive Care Unit on floor three to get situated, part of which will include checking my arms and legs for paralysis (eek! this is the spine, people) and to get my pain pump going. Approximately 30 minutes later, I'll be able to have people come see me. Although, I hope to still be knocked out for as long as possible.

I'll be in ICU for one to two nights. I will be able to have visitors, but no children and no using cell phones. For anyone who does visit, my mother will explain to you the details on washing before you enter my room. Nurse Betsy explained this to us in detail. It's for both mine and your protection.

When touring the ICU, I saw my surgeon and his surgical assistant Eric. Dr. Hostin was on a cell phone, so I didn't get to say "hi" to him. Funny thing, this was right after Nurse Betsy told us we can't use cell phones in ICU because it messes up the equipment. I thought neither one of them would recognize me, but Eric looked up at me and said, "Hey, I thought you looked familiar! How are you?" I said a quick "hi" and "good" before we ducked into an ICU room. Even funnier thing, I'm completely embarrassed around Eric, even though I know he's a doctor and I shouldn't be. Thing is, when I first went to see Dr. Hostin, Eric gave me my physical exam before I saw Hostin. I was so nervous, I was sweating profusely. Then this hot (sorry, Matt) doc comes in, and I have to bend over in front of him while he runs his finger down my dripping spine. I was so embarrassed, although my mom found it hilarious. Anyhoo....

From there, we went to the Progressive Care Unit, also on floor 3. I'll be here for the rest of my stay. It will have a few chairs that lay out into beds, a bathroom with a shower and a TV. I can have as many visitors as I want here, even kids. A few cool things about this area, the TV has a relaxation channel with soothing music and images, which will be good during recovery, and my first meals will be here. The cool thing about the meals is that it's not just any old food they bring you. I assumed I'd be eating mystery meat, broccoli and jello at their will, but no...I get to order room service. Anything I want from the menu. Of course, this made me excited.

For the rest of you visitors, we toured floor G, where the cafeteria is. It looked very decent. There's also a Starbucks coffee shop on floor one.

All in all, the tour was great. I'm so glad I decided to take it, even though it wasn't necessary. It made me feel a little bit better about what I'm going to be doing. I even went home with a folder filled with info on the hospital and important phone numbers for many of the people there.

Bluhd, bluhd!
The next step occurred yesterday, when I went to a lab to have my blood drawn and give a urine sample for testing. They took four blood vials, which seemed like a lot to me, but the nurse said they have a lot of tests to run. It was easy and relatively pain free. The results will be sent to my doctor, and a blood bank will be notified of my type so that the right type will be available during my surgery. I'm anemic, so the chances of me needing a transfusion are high. The scary part is the statistics on blood transfusions:

1 in 2 million units may contain HIV
1 in 1.9 million units may have Hepatitus C
1 in 137,000 may have Hepatitus B

I know those are big numbers and all, but think about all the transfusions that occur everyday across the country. It would SUCK to be the one. I could have given my own blood in advance, but that costs a lot of money and is not covered by insurance. Fingers officially crossed.

So, I am now a little bit closer to my surgery. Two more appointments up for next week!

Temporary insanity

2008-12-29T09:30:00.002-06:00

Moving sucks.
I am officially no longer a Dallasite. Since my lease is ending this week and my surgery is coming up so soon (less than three weeks away--16 days to be exact), I decided to move in with my parents in Kennedale. My dad and sister (Misty) work from home, so they'll both be able to take care of me. Mom works, but she'll be around me quite a bit, I know!

My other sister, Wendy, will also be living at home for a few months while she opens a new business in the area, so we'll have a full house.

While I love my parents and their home, I hope to be back in Dallas, living on my own, by May. We'll see how everything goes.

So Saturday and Sunday, my family helped me move. Today, I'll clean out my apartment and turn in my keys. *tear* Moving was awful. I hate it. When I move next time, I won't be able to help that much. My family (sorry again!) will probably have to do most of the work as I will still be recovering.

You've got to be kidding me!
Last night, I was in my bedroom at my new residence unpacking some things when I came across my mail from this week. In it was a letter from my insurance provider, Aetna, dated Dec. 18, 2008 (less than one month before I have to go in for surgery).

The letter said that they were denying coverage for all parts of my surgery.

Let's let this sink in a little.

Denied. All parts. I'd have to pay for everything. Impossible to do.

Here's the rundown of all the surgery procedures they denied (a lot of these were given to me as abbreviations, some of which I knew and others I did not):

Arthrodesis Post, for spinal deform, with or without cast; 7 to 12 vertebral segments 1 time--COVERAGE DENIED
Posterior Segmental Instrumentation; 7 to 12 vertebral segments 1 time--COVERAGE DENIED
Allograft for spine surgery only; Morselized 1 time--COVERAGE DENIED
Autograft for spine surgery only (including harvesting the graft); Morselized (sep incision) 1 time--COVERAGE DENIED
Bone Marrow Aspirat only 1 time--COVERAGE DENIED
LA, FA & FO (UN/BI W/DE SP C, CA EQ A/O N RT(S) (EG SP/LA R ST) SI VE SE TH(SSO) 1 time--COVERAGE DENIED
LA, FA & FO (UN/BI W/DE SP C, CA EQ A/O N RT(S) (EG SP/LA R ST) SI VE SE LU (SSO) 1 time--COVERAGE DENIED
Osteotomy of spine, posterior or posterlateral approach, one vertebral segment; Thoracic 1 time--COVERAGE DENIED
Osteotomy of spine, posterior or posterolateral approach, one vertebral segment; Lumbar 1 time--COVERAGE DENIED
Arthrodesis, posterior or posterolateral tech, sing level; Thoracic 1 time--COVERAGE DENIED
Arthrodesis, posterior or posterolateral tech, sing level; Lumbar 1 time--COVERAGE DENIED
Arthrodesis, posterior or posterolateral tech, sing level; each additional vertebral segment 1 time--COVERAGE DENIED
One day surgical--COVERAGE DENIED

Shit. I freaked out. I told my parents. Dad seemed calm and said we would call the doctor and Aetna first thing in the morning since it was currently after 5 p.m. on a Sunday. Mom freaked out more than me.

Apparently, in all the denials, it said that there wasn't enough medical evidence to show that this was medically necessary. It said my doctor failed to provide a required CT scan or MRI. Well, I haven't had either of those yet. Those are done close to the surgery date, so they give the most current view possible.

In the letter, it also discussed how to appeal. It said they have 30 days to make a ruling on my first appeal. I don't have 30 days!! My surgery is in 16 days!!

Sigh of relief
First thing this morning, I called my doctor's office and left a message for my patient coordinator. Amber explained to me the situation.

They received the same letter from Aetna last week. She immediately got on the phone with them and argued about why this is medically necessary. Eventually, they setup a "peer to peer" consultation between my surgeon and an Aetna doctor. Dr. Hostin explained all the reasons why I need this and gave them proof.

Aetna conceded. Hallelujah! They said they'll cover me for the surgery and everything that goes along with it.

One thing though, since my insurance plan is changing on Jan. 1 (it's still with Aetna, but just a better plan), we would have to re-apply for approvals on Dec. 31. Amber said not to worry. She said they assured her that it would be approved again. I should have a definite 110 percent answer by next Monday.

Breathe. Breathe. Breathe.

One more thing
I also received a letter from Dr. Nguyen's office. He's the on-staff physician at the hospital who gives me clearance for surgery at the hospital. He also will check on me each day while I'm at the hospital.

The letter asked for all my medical records from the last two years from an array of different types of doctors. This letter was dated Dec. 18, 2008, so I basically just received it, too.

Thankfully, of the types of doctors they asked for, I had only been to one clinic in the time period requested. I gave my wonderful father authorization to pick up my records, and he is doing so today for me. This was a relatively easy thing to do, but it would have been awful and near impossible had I seen more of these doctors. You would think you'd get a little more time on these things!

In summary, there were many headaches this weekend and even some tears. For the most part, everything has been resolved and is on-track. This surgery stuff is a very complicated business! Thank goodness for my wonderful family, friends and patient coordinator for getting me through this. xoxo to you all!

Celebrity skin

2008-12-23T09:10:00.006-06:00

Fun with Google
I'm stealing this idea from my friend's blog about dealing with (and beating! I'm still smiling about that) Hodgkins Lymphoma.

I did a google search for celebrities who have scoliosis. I know I shouldn't be happy for someone to have to live with a disease just because I have it, but it still kind of made me excited to know I share this with some really amazing people. Here are the results. I'm only including those who I've heard of, which basically means I've left off all the sports people (no offense). I'm adding Wikipedia hyperlinks to their names, in case you want to click to learn more about them:

Chloe Sevigny - Actress (she's probably the coolest person on this list.)
Daryl Hannah - Actress
Elizabeth Taylor - Actress
Isabella Rossellini - Actress/Model (in addition to some major movies that you probably know her from, she made a great mini-movie on YouTube about bees that I saw on my friend Lisa's blog. It makes me love her more.)
John Lydon - Lead singer of Sex Pistols
Kurt Cobain - Lead singer of Nirvana (my jaw dropped on this one)
Laura Dern - Actress
Linda Blair - Actress
Liza Minnelli - Actress (and dancer, thank you very much)
Renee Russo - Actress/Model
Princess Eugenie of York - Granddaughter to the Queen (UK)
Sarah Michelle Gellar - Actress/Model
Tutankahman - Egyptian Pharaoh
Yo-Yo Ma - Cellist
Vanessa Williams - Actress (Ugly Betty's Wilhelmina)
Sarah Polley - Actress
Rebecca Romijn - Actress/Model
Alexandra Marinescu - World Champion Gymnast (ok, so I've included one sports figure. I want to show that scoliosis, unless too severe, cannot keep you from accomplishing great things physically.)

I would say that having scoliosis doesn't inhibit you from doing what you want to do in life, but I do think that that depends on the severity and your access to medical treatment. I still think this list is really impressive and proves that many of us have problems, even seemingly perfect celebrities, and still go on to do great things with our lives.

Have a very happy holiday!

Interesting development--this is good

2008-12-19T15:18:00.002-06:00

Brace yourselves
In the trail of paperwork that is now flowing from Dr. Hostin's office to me, I noticed that one of the documents was called "surgery info without bracing."

Without bracing? I e-mailed the patient coordinator I'm working with at this point (there are two of them that work with me at different stages of the process) to ask if this means I will not have to wear a brace.

I've never heard of anyone going through this surgery and not having to wear a brace. I'm going to ask on SSO (my support forum) if they've heard of it. Typically, a person wears the brace almost immediately after surgery and for the next four months while doing everything except lying completely flat.

My patient coordinator said this:

At this time Dr. Hostin feels like you will not need a brace after surgery. The younger a patient is and/or the smaller the fusion, the likelihood of needing a brace goes down. You are still young enough that you heal more quickly than someone in their 50’s plus your fusion is more in your upper back and doesn’t have a lot of weight bearing pressure. Once you get sitting up in a chair and then walking after surgery, if you feel you might like the added support of a brace, we can order one for you then.

My thoughts on this
I'm happy about this because it makes me think that this may not be as hard on me as it is for a lot of other people. (Don't jump to conclusions here--I know this will still be one of the hardest things I will do in my life.)

At the same time, I'm a little scared about not having the support, but it sounds like if I get too worried then I can get one at anytime. Not a bad deal.

So, no yucky white body armour for me! This will be potentially a little less socially awkward for me. Woo-hoo!

Holy crap! This thing is going to cost money!

2008-12-18T10:27:00.004-06:00

First bills

Today, I spoke with the hospital about the MRI I'll be having on Dec. 29. The MRI is one part of preparing for surgery. I didn't realize it was going to cost me money!

Not just a couple hundred bucks either. The full cost of the MRI is $6,897.36. I've already met my insurance deductible, but not my out-of-pocket maximum. Therefore, my insurance will pay 80 percent, and I'll pay 20 percent. For some reason, I was under the impression that I reached my maximum already and all of this would be free until the first of the year. I'm so sad to say that I was mistaken.

So my second bill for this will be for $1,379.47.

My only other bill was after my first appointment in September at Baylor Scoliosis. It cost me $356.54.

So my new running total for this surgery is.....drum roll.......$1,736.01. Good-bye savings account!

UPDATED: I had them switch my MRI to the first of the new year, so it will count toward my deductible/out-of-pocket maximum for next year. I feel better about this now.

Pop quiz, friends

2008-12-15T13:53:00.006-06:00

Preparations
I've been thinking a lot lately about what it's going to be like to spend two or three months in bed. I'm sure most of my time will be spent sleeping and taking pain pills. In the time that I am able to do more and before I am ok'd to start telecommuting to work, I think I'll probably be reading and watching a lot of movies.

I am an avid reader. I read at least one book a month as it is now and see a movie maybe once every week or two, and I currently work at least five days a week. I can't imagine how many more I'll be reading or watching if I'm just in bed all day for days on end. But I don't want to just watch a bunch of crap or whatever is coming on TV, and I don't want to re-read (again) all my books.

If you were on a desert island...
So here's the dealio--I want to know the books and movies that you would recommend for me to read/watch.

Give them to me in the comments. Here's the rules:

First come, first served --you cannot give the same answer as anyone else in the comments. Each answer has to be new, so I get a little variety.
You can't choose one the books or movies that are already on my favorite list. Favorite books: To Kill a Mockingbird, Harry Potter (all of 'em), A Tale of Two Cities, Shopgirl, The Red Tent, The DaVinci Code, Leaves of Grass. Favorite movies: Juno, Anchorman, Rushmore, Amelie, Breakfast at Tiffany's.
You can only pick ONE book and ONE movie. UPDATED: LIST AS MANY AS YOU WANT (Becky intrigued me on this one!)

Thank you for playing. I look forward to your answers!

General schedule for day of and days after surgery

2008-12-09T16:23:00.005-06:00

This is when I get scared
As I posted yesterday, here is some more information from my patient coordinator about what to expect.

day of surgery: I'll be admitted to the hospital two hours prior to my surgery. Once I'm in the surgery room & the real action is about to begin, an OR (operating room...but surely you all knew that at least from Grey's Anatomy, right?) staffer will let my family know it is beginning. (btw, my heart is starting to race as I type this.) The nurse will "call out" (their words, not mine; I guess it means they'll shout my name and if someone is there for me, they'll give them my info) each hour with an update. Dr. Hostin will visit with my family after it is all complete. Then my family will be able to see me. I'll be admitted into the ICU (Intesive Care Unit) for the first night.
4-5 days after surgery: I'll be moved to a regular room the next day after surgery, provided that I am doing well. I will stay in the hospital for 4-5 days or longer if it's medically needed.
after hospital release: I will be transferred to the Baylor Institute for Rehabilitation in Dallas. I'll stay there for 7-10 days. While here, I'll learn how to adjust to my new body position, my brace and life after surgery. I'll learn daily activities like how to get in and out of bed, sit down and up from a chair or potty, out and in of the shower, take off and put on my brace, etc. Visitors will want to check my schedule before coming to my room, as I will be in and out each day.
Five post-op visits: I will go to Dr. Hostin's office frequently to check how I'm progressing and healing. They'll check my wounds, how my brace is fitting, take x-rays and overall see how I'm moving, sitting, walking and functioning. My first visit will be the day I am discharged from rehab. Then, I'll visit them 2-3 weeks from that, one month after the second appointment, 4-6 weeks after the third appointment and then 6-8 weeks after the fourth one.
??? to four months after surgery: I'm not sure when they put the brace on for the first time. Maybe right away. I don't know. I do know that I will be in a brace at all times unless lying completely flat for 4 months. They recommend wearing light, plain t-shirts under the brace to protect my skin and keep the brace clean. After four months, they'll help me wean off wearing it. I hear from my SSO friends that it can be a little scary to stop wearing it because you feel so fragile.
8-12 weeks after surgery: I will return to work at least part-time.

While searching for a scoliosis support group (I found SSO), I stumbled across a different forum that had quite a few complainers in it. I'm sure that most of their complaints were very justified. Some people practically shouted "don't do it!" because they knew so & so who died or had their surgery messed up and had to have multiple surgeries or the rods and screws broke through the skin and lots of other wonderful stories. (everyone briefly chant here with me...this will not happen to me, this will not happen to me, this will not happen to me.)

The comment that stuck out the most to me was a woman who described the first few weeks after surgery as, "somewhere between hell and Nazi Germany."

Great.

Sounds fun, right?

Timetable and useful information

2008-12-08T15:49:00.003-06:00

FMLA update
For those of you who have been following this (hello my lovely 13!), my FMLA and salary continuation paperwork has been accepted by HR. My contact said everything "looks good" and is "on-track."

Next step -- pre-op
I e-mailed my wonderful patient coordinator today to ask about when my next appointment would be. This is what I have found out:

6 weeks prior to surgery: sign and return "Surgical Contraindication" form (done); this form explains that I cannot have ANY tobacco products for the six weeks prior to and six months after my surgery. Additionally, I will not be able to have Aleve, Motrin, Ib-profen and any other anti-inflammatory or blood thinning product during this time. At my blood test, if any of these products or substances are found in my blood, my surgery will be cancelled. (du, du, DUM!)
2 weeks prior to surgery: blood work will be done to check for nicotine, pregnancy and other vile conditions.
1-3 weeks prior (time is unestablished): this is one of those points that my mom, Grandma and possibly more of you will want to look away. Hey, I'm trying to be honest as possible, so if any of you ever have to do this, you'll know EXACTLY what to expect. I'm to stop taking birth control at least a week prior to surgery or don't start a new pack if my cycle ends 2-3 weeks prior. I'll keep the exact time to myself.
1 week prior to surgery: pre-testing and pre-registration at the hospital; I'll have a platelet test to show how my blood clots and a chest x-ray (EKG). This will be scheduled with an internal medical physician on-staff at the hospital (Baylor Plano) named Dr. Nguyen. Dr. Nguyen will also see me each day I'm in the hospital.
Week of surgery (not a specific day): Pre-op visit with my surgeon, Dr. Hostin; A family member (mom?) will go with me. Dr. Hostin will go over the procedure, risks and answer any questions I have. I'll also need to sign consent forms and do any additional testing they see fit, which could include a myelogram/CT (looks at my spinal cord using dye), discogram/CT (enhanced x-ray using dye), pulmonary test (checks my lung function), stress test/cardiac (checks my heart), MRI (imaging technique) and/or bone density testing. Additionally, I will be fitted for my brace, which I will wear AT ALL TIMES, unless lying completely flat, for FOUR MONTHS.
5 days prior to surgery: I'll start washing my neck, chest, abdomen, sides and back with Hibiclens Antibacterial Soap, which they say is stronger than the average soap. I need to do this daily up to the day of surgery (I'm expecting a joke from Carra here).
2 days prior to surgery: I'll swab each nostril twice a day with a prescription cream to help reduce bacteria and infection.
1 day prior: one last blood test at the hospital to type my blood and send this information to the blood bank.
Additional appointments: I have the option to take a tour of the hospital to see all the areas where I will be. I think I'd like to do this. Also, I'll need to meet with a staff member from the rehab facility to go over information about my time there.

To make this really suspenseful, I'm going to wait until tomorrow to post the schedules for the day of my surgery and timetable for after my surgery. I know, I know...you'll be waiting with bated breath until then! Be strong, my friends. We all love a good cliffhanger, right?

For now, you can comment on the above information and give me any remedies you know of for headaches that do not require any of the aforementioned pills or any anti-inflammatory or blood-thinning agents.

Relief

2008-12-03T14:17:00.002-06:00

The sky was falling
I am prone to overreacting, at least about all of this. I had my meeting with my boss today, and it went swimmingly. He said he supports me 100 percent and that the #1 priority is my health and recovery.

If I am just lying around in bed, feeling wonderful, watching "General Hospital" and trying to figure out why my doctor hasn't released me yet to part-time work, I can feel free to telecommute, he said. That way, I can get off the FMLA days away (of which you only get 12 weeks per year, and you don't want to deplete unless something unforeseen happens). Honestly, that is something I would love to do. This isn't a vacation to me. As soon as I am ready, I want to work. I love being a part of my team at the office and don't like the idea of not holding my own. As I said to the boss man, I do not want to be useless if there is anyway I can physically handle being useful.

So I'll take as much time off as I need (8-12 weeks? maybe), but I am keeping my fingers crossed that I will be telecommuting part time in whatever role I feel able to fill by 6 weeks out.

Crisis averted.

UPDATE to "Breaking news (more to come) -- I may be developing an ulcer"

2008-12-01T16:52:00.003-06:00

My patient coordinator e-mailed me back (I told you she was quick!). She said that 8-12 weeks is the standard time out. She said every patient is different and that we won't know when I'll be ready to come back until I actually am ready. She also said that it is better to give work the longer estimate and come back early than give the shorter one and not be able to make it.

She's probably right.

The plan
Here's what I'm thinking. I setup a meeting to talk to my boss on Wednesday and fill out all the paperwork we need to for FMLA (he and I both have to fill out forms for it and add those to the form the doctor's office filled out and then send them all to HR). I plan on explaining to him then that the time they put on the FMLA form is the standard but that it is likely (because I'm young and healthy and only my top curve is being corrected) that I will come back early, although not certain. If for some reason I'm not ready to come back after six weeks, I'll determine then if I think I'm able to telecommute at that time. For those of you who do not know me well, I have a job that I can do mostly from home, if necessary, as long as I have my laptop, wireless card and BlackBerry. My boss lets us telecommute occasionally when we can't make it into the office for whatever reason.

Hopefully I'll be able to do at least some work after six weeks from home. I'm just worried about when I'm coming back.

Let's count
Typically, March through May are really busy months for my business. If I come back 6 weeks after my Jan. 14 surgery date, I'll be back the first week of March (good). If it's 8 weeks, I'll be back mid-March (not-so-good). If it's 10 weeks, I'll be back the end of March (bad). If it's 12 weeks, I'll be back mid-April (ugh).

So Wednesday, we'll discuss all of this and see what he says. Don't uncross those fingers yet...

Breaking news (more to come) -- I may be developing an ulcer

2008-12-01T15:28:00.005-06:00

Uh-oh
I'm trying to get my paperwork together to submit to work to take a leave of absence (under the Family and Medical Leave Act of 1993, fyi). My doctor's office faxed me their portion of the FMLA paperwork just now. On it it says that I'll be unable to work for:

8-12 weeks from Jan. 14, 2009 surgery. Then part-time return to work, then full-time intermittently TBD.

Wow. Thats not what I thought. When I spoke with the doctor, he said I could probably (which I know "probably" doesn't start out factual statements) go back to work after about six weeks. This is what I told my boss and the people I work with--six weeks.

Now imagine me having to tell them that I may be gone two weeks longer than that or even twice as long! Three months?! That puts me back half-way through our busiest time of the year. This is not a conversation I want to have with my boss (disclaimer in case anyone at work is reading this: I know I have the best boss in the whole world and any concerns he has about this are definitely well-founded and understandable, but I still don't want to have to tell him this!).

I just e-mailed my patient coordinator to ask her which is more likely-- the 6 weeks estimate or the 8-12 weeks one. Maybe I got a better estimate because I'm young and healthy, and maybe the longer estimate is the standard answer they give on the FMLA forms for most people. She's usually pretty quick at e-mailing me back, so I'll post again as soon as I have more information. Keep your fingers crossed with me.

Research

2008-11-24T09:46:00.006-06:00

I'm "special"
One cool thing I found while researching the cause of scoliosis was information about its prevalence. From Wikipedia (Thank goodness for Wikipedia!):

Scoliotic curves greater than 10 degrees affect only 2-3 percent of the US population (my curve is in the 60 degree range).
The prevalence of curves greater than 20 degrees affect about one in 2,500 people (once again, my curve is in the 60 degree range!).
Single or "C" curves are slightly more common than double or "S" curves (mine is an "S"). Males are more likely to have infantile or juvenile scoliosis, but females have a high incidence of adolescent scoliosis.

Since my curves are so much larger than these stats, I would like to find some more stats, but this is all I could find for now. I'll post if anything comes up.

I'm in a glass case of emotion

2008-11-17T12:20:00.005-06:00

Seriously? Again?
I understand things change and sometimes you can't help it. It shouldn't be a big deal or anything to be mad about. Roll with the punches.

What. Ev. Er.

We all know my surgery date changed from Jan. 19 to the 23, and it shook me up. Then, on Thursday afternoon, I received another call from the doctor's office. Not only did they not realize they were closed on Jan. 19 for the MLK holiday (the reason my first surgery date changed), but actually most of the staff is out of town that entire week for some reason. We would need to change the date again. I wonder if my patient coordinator, who BTW was very nice about it, could hear how upset I was on the phone. We changed the date to the next Monday, Jan. 26.

The rest of my day was ruined. I was sad all day about it until Matt distracted me with Mediterranean food and hot chocolate. (Thank you!) I would deal with this new date again.

Conflict
Then on Friday, I realized that this new date was no good for work. It would put me back at work a whole week later, not good for the busiest time of our year. There's no way I could do it then. It has to be earlier. I felt nauseous.

My only other option was the week before my original surgery date. I hadn't wanted to do it this week as my best friend is having a birthday party on the 16th, and I want to be there. You know, one last time to see all my friends and run around before I'm "taking it easy" for the next few months. Due to illnesses and work conflicts, we haven't celebrated her birthday in a few years.

I had to choose though, and I figure she'll understand better than work. So, I called my patient coordinator and prepared myself to beg for another date. It was easier than I thought.

My new surgery date is Wednesday, Jan. 14. Please, please, PLEASE don't let this one change. I can't handle the stress! At the movies with some girlfriends on Friday, I even got choked up when they asked me when my surgery is. I must have looked crazy. I bet that's the last time any of them ask me when it is! Ha!

One of my many genetic gifts

2008-11-17T11:22:00.003-06:00

Cause and effect
Today, a friend of mine at work asked me what causes scoliosis. I said that no one really knows, but that it is likely hereditary. As soon as she walked away, I rushed to Wikipedia to look it up. I was right. And wrong. But we'll go with right.

Scoliosis can be congenital (a disorder present at birth that developed in the fetus) or a secondary symptom of another condition like cerebral palsy, or it can be idiopathic, which is sub-classified as infantile, juvenile, adolescent or adult, depending upon when it starts. Mine is adolescent idiopathic.

Idiopathic-- adj.; medical term meaning unknown cause; arising spontaneously; from an obscure or unknown cause

Medical breakthrough
So it's unknown. Kind of. Researchers for years have assumed that scoliosis runs in families but haven't been able to prove a connection. In 2007, researchers, including some from Texas Scottish Rite Hospital for Children where I used to go for my scoliosis, identified a defect in the gene CHD7 to idiopathic scoliosis. From reading Wikipedia and this article, I'll try to explain how the defect works. (Doctors, if any of you are reading this, feel free to refute this as I have no clue about science.)

Researchers analyzed a whole bunch of DNA from families with scoliosis. They found that in people with scoliosis, the CHD7 genes weren't absent but just turned off here and there. This is probably wrong, but its how I think of it--imagine a strand of 6 billion Christmas lights and every once and a while, a bulb is off. If too many are off, there could be a lot of really bad problems associated with a syndrome called CHARGE, or if there's not as many, scoliosis can gradually develop.

As we know, genes come from our parents, so apparently, idiopathic scoliosis is hereditary. It's called a Mendelian inheritance. So while some of you get dimples or hitchhiker's thumb, I got scoliosis. Thanks, Mom! Just teasing. Mom also had to deal with life with scoliosis, so there's no blame from me. Someday I may pass this onto my children and we can all laugh about it over a cup of tea. Ha, ha, genetics.

UPDATED: The big reveal

2008-11-12T12:52:00.017-06:00

I feel so naked!
I promised x-rays, and I'm finally delivering. Funny story--when the doctor showed them to me in his office, my first thought wasn't about the curves in my spine but about my goods on display. I don't remember them being there before in my x-rays growing up! It was a little bit embarrassing to see, which may make some wonder why I would then decide to put them up on the internet for EVERYONE to see. I want to be honest here about my experience. So boobs, schmoobs. Let's get on with the show.

1. "PA Scoli" This x-ray shows my whole spine. It was taken with me standing up against a wall.
2. "LAT Scoli" This shows my right side, the side where you can see my curve (my hump-back) best. It was taken with me standing up with my left side against a wall. UPDATE: After some confusion, let me clarify--my right arm is draped down and across my chest in this x-ray, so that is my arm you can see so prominently from the side.
3 & 4. "T Bend R" and "T Bend L" These show movement in my upper curve when I bend my upper body to the left and right.
5 & 6. "L Bend LT" and "L Bend R" These were taken with me lying face down and bent every which way by the x-ray tech to get a good shot of what happens to the bottom curve when I move. If you notice, my bottom curve seems to move around to compensate for the top curve. In #6, it almost seems to go away, which is why the doctor thinks that the bottom curve isn't a real curve but a compensation my body made for the top, real curve. That's why he is only going to fix the top curve, and let the bottom curve work itself out on its own.

So the doctor will fuse a rod to the vertebrae in the top part of my back. The next time I post x-rays, you'll see the rod and screws in my back. I keep looking at that first x-ray and imaging what I will look like in my x-ray and in person when those curves get pulled straight. It will make me look so much better, I just know it.

Ch-ch-changes

2008-11-05T12:35:00.011-06:00

Two new posts in two days--you lucky readers, you! Onward:

A bad sign?
Today, I woke up in a glorious mood. I woke up on my own three minutes before my alarm was set to go off and said to myself, "Today is a great day, I won't bother with the snooze button!" and started getting ready for work.

As I was rushing to get out the door, my cell rang. It was the Baylor Scoliosis Center. There was a complication with my surgery date, and I would need to change it.

Instant bad mood. I asked if I could call them back later. On the drive to work, I kept thinking about all the reasons why I should not do this surgery. I was upset, apprehensive, stressed.

The date change is one of those things that just happen, and I know that, but I was still upset. You get your head wrapped around something as big and important as this, and then it changes. Now I have to re-group and get my head around a new date.

Knowing Dr. Hostin does surgeries on MWF, I asked for the next surgery day, Wednesday, Jan. 21, because at least that's only two days later and not on a dreaded Friday. No dice.

Not wanting to have re-schedule before my intended date (this may seem unimportant, but I want to celebrate my besty's bday with her on the 16th since fate always keeps us from celebrating; I figure it will be my last big celebration before the surgery) and not wanting to re-schedule too far away from my original date of the 19th, that leaves Jan. 23--a Friday.

I asked to schedule then, they said yes and now it's set. Jan. 23. A Friday.

Reassurance
I e-mailed my patient care coordinator with my fears about Friday being right before a weekend and if something were to happen, the doctor wouldn't be there to take care of me.

She replied that their practice has someone on-call 24/7 for patient needs and a physician's assistant or Dr. Hostin will come check on me everyday that I'm in the hospital. When I'm transferred to the ICU after surgery, I'll have my own nurse all to myself all day long for that first day.

She said the nurses on-staff at the hospital are all specially trained to deal with patients who have this surgery, and if needed, Dr. Hostin is only a phone call away at any time--as is she. She said that I do not need to worry and to let her know if I have any other concerns she can help me with.

Enough already
I feel better now about my Friday concerns, although I'm still shaken up by the date change. At work, we had just figured out who's covering on what days a major part of my job while I'm gone. Now I'm going to have to figure out four more days that will change everyone slightly.

In yoga class, my teacher sometimes when we're holding a position will repeat to us again and again "Let" on the breaths in and "Go" on the breaths out. We release everything our bodies are holding onto and just let go and get in touch with ourselves in the position we are currently in.

So that's my focus today. Letting go.

Still me, only better

2008-11-04T11:44:00.009-06:00

I've decided that I want to be as healthy as I can before my surgery to help with the healing process. I hear that strong, healthy people heal faster and with less difficulties.

I want to pump me up
Exercising prior to surgery speeds post-op recovery, so says World Health.

With my new plan to be as healthy as possible, my goal is to work out five times a week. I never skip working out to just sit around and watch TV. If I miss, it's because I have something important to do that can't be moved around work out times.

I feel the most important exercise I do is yoga. I feel so strong and in-touch with myself after yoga class. It even gets my heart pumping and breathing heavy because we move so quickly through the poses and breath in and out through our noses only to keep heat inside the body. It can also really be customized to fit what you want to get out of it.

Get in my belly
Food. I love it. But unfortunately, I kind of eat junk. Or at least I used to and am getting better all the time. I cannot eat junk food more than once a week and even that gives me major guilt trips. I'm not buying crap anymore from the grocery store and am getting as much organic as I can. I make sure to have a vegetable with every meal and drink one small glass of juice (but not the super sugary bad kind) once a day. I'm staying away from my former theory of dessert with every meal, bu I am by no mean depriving myself. When I go out to eat, I eat whatever I damn well please. I'm just a little smarter about it.

I'm also imbibing vitamins. I'm taking a women's multivitamin and also BioSil (which I mix with that one glass of juice) for strong bones and joints (it helps my hair and nails grow, too!). All good things, easy to do.

Saying "good-bye" to an era
Probably the best thing I can do for my life is give up smoking. Yes, I was still smoking for you family members who maybe shocked at this. I wasn't a regular smoker, but I was a chain smoker once I started drinking. I seem to drink once a week or sometimes every other week, so I was smoking more than I should.

We all know why smoking bad. But it is especially bad if you're about to have surgery. It deprives your body of oxygen and causes inadequate blood supply to your heart, which is already stressed out because of the surgery. One Web site states:

This is not just theory. There have been multiple studies confirming that smoking increases the incidence of pulmonary complications after an anesthetic as much as six times. Smoking has been shown to be an independent risk factor for complications ranging from complications of lung function to wound healing to cardiovascular events such as heart attack.

So I decided to stop after my birthday party. Since then, I've had one cig. It tasted gross. That was four weeks ago. Of course, I still want to smoke, but I don't. My lollipop intake has signifantly gone up, though. (I have a sucker everytime I decide I need a cigarette. I'll probably end up with my first cavity, but hey-- you need lungs more than teeth in surgery, right?)

In summary, I haven't gone gung-ho about any of it, but I think I've taken a step in the right direction. Hopefully, because of these changes, my surgery will be easy as pie and the recovery will be that much better. That's a good thing.

Riddle me this: the question list

2008-10-27T22:14:00.007-05:00

Read them, write them
I'm making a list of questions that I want to ask the doctor at my next visit, which won't be for at least a month. Probably in the beginning of December, the patient coordinator said.

Here's the deal readers--my list needs your help. Ever noticed how much more it helps to bounce an idea off someone else, than just to go with your own first thoughts? If you could, let me know if a question comes to your head whenever you think about the surgery or recovery or if you just see a question that's obvious to you but is not on this list. I can't tell you how much this will help me.

Here's the start of my list:

1. How long will the surgery last?

2. How long will I be in the hospital afterward?

3. When people go back to work after their month or two off, are they typically able to do full days or not?

4. Will I be in a brace? If so, for how long?

5. Will I need a cane or a walker? How long?

6. If I am in a brace, how long each day do I need to wear it?

7. How will I sleep? Will I be able to lay on my back at all?

8. My mother's surgeon used bone from her ribs (Mom, is this right?) in her back. Will I need anything like that?

9. Will I be able to play soccer or snowboard or other sports and games where I may fall or get hit?

10. How long will it take for the hump in my back that I currently have to go away? It will go away, right?

11. How long will it take for the bottom curve to straighten out on its own?

12. How tall will I be when this is all over?

13. Do I need to give blood prior to surgery? Or can I not, since I'm anemic? I honestly don't know if that's a silly question or not.

14. Will I get a chance to talk with the anesthesiologist before the surgery?

15. How long typically before people can exercise again?

16. How long will I be in constant pain?

17. What exactly happens in the surgery?

18. Will I be in the ICU afterward, like my mother was?

19. If the second curve doesn't fix itself on its own like you said it will, will I have to have surgery again to fix that one, too?

20. How much will it approximately cost? (not assuming insurance)

....now your turn. Let me know if any other questions pop into your head or if you think I should ask for more explanation on anything.

A second part to this post will eventually happen that will have answers to all (I hope) of these questions. For now, ask away.

Crashing

2008-10-20T18:35:00.005-05:00

Unrelated
Today, I was in a car accident. A woman ran a stop sign, and I (who did not have a stop sign) ran into her. My poor VW bug is dead, gone forever.

I know this is unrelated to the reason I'm doing this blog, my scoliosis. However, the resulting headache, fever, burning eyes (from powder that flew out from the airbags) and body pains will keep me from fulfilling my one blog a week promise I made, at least this week.

I'll leave you with one promise--x-ray pics to be coming very, very soon. My doctor's office has promised to mail to me today a cd of the x-rays. As soon as I get them, I will post them.

For now, I'm going to lay down, dream of the better days when a girl could safely cruise in her VW beetle and will promise to blog again very, very soon, probably in the next couple of days.

Thanks for understanding, all of you! For now, I'll leave you with a treat, a video from another bug lover in a song that I will dedicate to my long lost "Red Animal War" buggy. I'll miss you like candy. (Tear)

A dose of reality

2008-10-13T19:57:00.003-05:00

Pick a day, any day
This process seems to be one step and then a next step. First it was make an appointment, then go to it. Then it was let the family and friends know, then talk to the boss, next schedule the surgery.

Everything was ok 'til that last one.

I e-mailed the lady at the doctor's office who handles scheduling to ask how I pick a day. I told her I preferred sometime in January. She wrote back that I couldn't between this date and that date, as they were already booked. I would need to do either before then or after. Also, Dr. Hostin performs surgeries on Mondays, Wednesdays and Fridays, so I need to pick one of those days.

My thoughts were that Friday wouldn't be any good because I don't know if Dr. Hostin works on weekends, and should something happen, I want him to be easily accessible.

Then, everything changed for me.

I looked at my Outlook calendar and panicked. All of a sudden, the surgery became real to me. I felt like crying. I was in an instant bad mood. I stopped and came back to it later, although the nerves never went away.

I decided Monday, Jan. 19 looked ok. My best friend's birthday is the Saturday before that, so I'd still be able to go out for one last celebration as the way things are. I e-mailed the doctor's office to request this day. Unfortunately, my procrastination didn't pay off--the scheduler was out of town for one week. I would have to wait to see if Jan. 19 was my day or not.

This was the worst. I was already freaking out and now I had to wait a week to find out.

Nightmares
I laid in bed that night thinking about the surgery. I imagined the doctor picking up my spine from my wide open back and just moving it over to the left where it should be--in the center of my back, like a good spine. It would be red and bloody, chunky. God, that must hurt.

I imagined the moment when I would be led away from my family. This one always gets me. I may cry now. I imagine having to say goodbye and laying in a bed and being wheeled away by essential strangers.

Then the anesthesia. Jeez. This one really scares me. A part of me worries about it not working and me being able to feel everything but the doctors don't realize it. I saw this woman on Oprah once who had stomach surgery and swore this happened to her. She said it was the worst moment in her life and that it felt like a blow torch ripping through her body when they cut into her. The whole time she was yelling in her head for them to stop, but she couldn't move a muscle. They had no idea.

My biggest fear about the anesthesia is just falling asleep and never waking up. What if I never see my family again?

Then I worry about all the pain I'll be in and if it will be like any pain I've ever felt before. How will I lay down after the surgery? Will I be on my back or on my stomach? Will it hurt everytime I move and breathe?

These thoughts were with me until I finally fell asleep that night and every time I've thought about my surgery and the dreaded date since then.

Confirmation
I received an e-mail today from the new lady in-charge of scheduling at the doctor's office. She confirmed that Jan. 19 would be my surgery date. I was driving home when I received the e-mail. I started crying when I read the date in the first line on my BlackBerry.

This is really happening. Should I be doing this? I can manage the pain I'm in now. Is this necessary?

The e-mail said I'm booked for Jan. 19 at 7:30 a.m. and that my testing and pre-op appointments won't happen until it's closer to then, probably at the beginning of December. Until then, I just wait.

I'm waiting.

Step two

2008-10-06T07:49:00.009-05:00

A sad sign

I went to my doctor's appointment at Baylor Scoliosis Center almost one month ago. I decided I needed support, so my mom took off work to come with me. My mom rocks, too, by the way.

On our way from the parking lot to the doctor's office, I saw one reason to keep going with this...a little old woman was walking toward the medical center. My mom and I were upright, and she was at almost a 90-degree angle, bent over so far that her face naturally looked to her feet. This is a form of scoliosis. I have no idea how this woman slept at night. It was so sad. I just felt awful for her. How did she and her family let her get to this point? How much pain must she be in in every waking moment? It was so sad. My heart goes out to her.

That is why I am doing this. I will not be that little old lady, if I can help it.

The appointment

The office was nice. Decorated comfortably and plush. Good magazines and even books. Mom and I perused a Frank Lloyd Wright book while we waited. We weren't there for too long before I was signing paper work to participate in a study. It's anonymous, so I was cool with it. Let's be honest, I'm not too shy so I would have been fine with it probably either way.

The appointment was typical with x-rays and walking on tip-toes and bending and such. The staff was so nice. So nice. The x-ray tech had me laughing the whole time and the surgeon, Dr. Hostin, I met with was so helpful. I immediately felt confident in him. I think that's a good sign. Sometimes you just know if something is wrong or right. This definitely wasn't wrong.

He looked at my x-rays and spoke with the first doctor who gave me my walking and other tests. We talked about my past experiences with doctors for my scoliosis. He told me about his experiences and his practice's values.

We talked about how my curve growing up was always in the gray area where we opted not to have surgery. He said that when looking at scoliosis in kids, it's kind of like looking in a crystal ball. You're trying to figure out how this child will grow into an adult with scoliosis--will his or her curve get worse or stay the same? With me, my doctors were optimistic, and we opted against surgery.

Dr. Hostin said that now I am out of the gray area. I should have surgery.

I was convinced of this, too, when he told me how tall I am now. I am 5 feet, 5 inches tall. I was almost 5'7" when I graduated high school. Holy crap!

This shocked me more than anything else I heard. I'm shrinking! My spine is curving so much, I'm getting all scrunched up. This is why my bra has gone to a 38", I'm guessing. My back is going from long to wide. This sold me. I can only see this getting worse if untreated.

The doctor said I don't really have to have the surgery right away, as my pain is manageable and I don't look too horrible right now. The sooner, the better, though, because the older I get, the worse my symptoms will get and the harder the surgery and recovery will be on me.

Surgery (more specifics on this to come later) consists of opening up my back and fusing a metal rod to my spine. I wonder if I'll set the metal detectors off now at the airport.....off the subject.

Anyway, as I said in my e-mail post below, I have two curves in the 60 degree range. The top curve is the real curve, and the bottom curve (this is kind of cool) was just made by my body to compensate for the curving top half of my spine. As with all things, it's all about balance. Dr. Hostin said the bottom curve should go away on its own once we fix the top part. The good news is the rod will only need to be in the top part of my back, so I'll still be able to bend and move the bottom part of my back, which is really where most back movement occurs.

Dr. Hostin showed my mom and I my x-rays (I'll ask if I can get a copy of these to put on here and will save my analysis of what shocked me about x-rays til then) and the x-rays of similar (anonymous) patients. He answered the few questions we could think of then. My list since has kept growing.

My mom was all parental and asked the young whipper-snapper about his experience. Once satisfied, we asked if he ever had a patient who died on the table or ended up paralyzed. No and no, so that's good. One scary note, I read a statistic that 1 in 100 who have the surgery could end up paralyzed. No guarantees, but Dr. Hostin said this won't be the case for me.

We asked the dangers, which are:

1. death (everyone has to go sometime....ha)

2. ending up paralyzed (1 in 100 chance)

3. infection (the body and metal don't always mix; if this happens, you have to have surgery again so they can clean the metal and put it back....this makes me sick to think of going through twice.)

4. (this one made me laugh) eye problems from laying on your stomach for so long

How much time will I need off from work? He said most need a month to six weeks of bed rest with six months of "taking it easy". I plan on asking more questions about this later.

Then we left. The next step is to set up the surgery.

Since then

I left completely cool with the situation. I was sure I would cry if the doc said surgery. That was one reason to bring the mother. But I didn't. I even felt a little relieved afterward. Maybe it was just fear of the unknown that had freaked me out before. Now I knew and I accepted it.

Or at least that's what I thought. Then last week everything changed. This post is getting too long, so we'll delve into feelings next time. Class dismissed.

More of how this came to be

2008-10-01T17:33:00.005-05:00

The first step
With all this in mind, one day at work I decided to do a little investigating. I got onto my insurance Web site and did a search on doctor's specializing in the spine and spinal surgeries--orthopedic surgeons, if you will :) .

Turns out, there was only one option for me. The only practice in my insurance network was the Baylor Scoliosis Center in Plano.

They had a very informative Web site (http://www.consultingorthopedists.com/), which I read front to back (during my lunch break, of course...yeah, that's right....) and it really helped me decide to go talk to them. The Q&A was amazing. I felt like the doctor who wrote it really cared about what he was doing. The best part was that it wasn't all about kids or old people.

That day I e-mailed the site to Matt and my parents.

My dad's e-mailed response was golden--classic Dad:

Megan, It appears that your mother is probably the cause of your back problems and I believe that she should have to pay anything that your company insurance does not pay. It would be wise to speak to her about this. Luv ya, dad

He wrote that in a joking way, but I know he really meant that he & mom would help me out no matter what. Joking or not, dad rocks.

I called the doctor the next day to ask about setting up an appointment. I decided I wanted my mother with me. I know, I know. I'm old enough to do this on my own, but she's been through this before & I wanted her input & support. I scheduled an appointment on a day she could take off from work.

That was at the end of August. We just had to wait two more weeks til it was time for the appointment.

The recent past

2008-09-23T17:43:00.004-05:00

Bouncing it around
As I said, I've been worried about what to do for a while now.

Matt has been my sounding board, listening to everything and helping me decide whether I should go see a doctor and what I will do if I need surgery. Typically I mention things to him like what he will do if I end up taller than him, will he take care of me while I'm resting--typical girlfriend what ifs.

Monica has equally helped me with this, always giving me the sound advice that I should not worry about the what ifs because I can't do anything about them. She also has a curve of her own. Although I don't know the severity of it, it's been nice to talk to someone else my age who understands. She also has gave me this wonderful little tidbit which I am taking to heart, true or not--she said that women with scoliosis carry additional weight in their stomachs and can get kind of lumpy around there. Ha! That explains so much, or at least I'm going to let it explain it for me. So that is at least something to look forward to after surgery--stretching out my tummy. Watch out, Giselle.

I'd also been dropping little mentions about my back in front of my parents, too. This has been more subtle as I didn't want to worry them and I really didn't want to face any questions they might throw at me. It seemed to make it more real than I wanted.

So I would ask my mom a question here ("how long were you on bedrest after your sugery?") or say something in front of my dad ("I may need to see a chiropractor about popping my back"), but the moment they go too deep into the questions, I backed off.

Then, one night I went to Don & Courtney's for dinner and, with the help of some red wine, started spilling the beans about my back. I remember them both, especially Don, saying that the sooner I figured out what I needed to do the better. His theory was that if I had to have surgery, it would be way better to go through it young than old when I may not be as strong and healthy as I am now. I of course already knew that, but for some reason, it just really opened my eyes to hear him say it.

Ascots, paper gowns and ever-expanding bras

2008-09-16T17:45:00.006-05:00

When I Found Out
I found out that I have scoliosis when I was in the sixth grade. It was a mandatory screening for all the kids. The typical way they tell if you have this without an x-ray, is you stand in front of a nurse, bend over and let the nurse run her finger down your spine. If it feels crooked, you may have scoliosis.

So my dad took me to a specialist. My mother had to work, so it was just the two of us. The appointment was awful. They took x-rays, and I spoke with the doctor. He wore an ascot. I thought he was a sailor. (Note to boys--unless you're Christopher Walken, put the ascot down...I'm looking at you David Beckham.)

He told my dad and me that I would need surgery right away. I would be home for so long, in a brace for longer, not able to go to school or play sports. I'd have to walk in the hallways at school at special times when no one else was around who could run into me. I was apparently breakable. I remember crying.

Thankfully, my mother balked at this, and we went elsewhere for a second opinion.

The Consensus
It was decided that I would not need surgery. Apparently, back then, I had a 50-something curve on the right, which was balanced on the left by a second curve. I had no pain whatsoever and couldn't really tell any problems with how I looked, so I was completely against surgery. I ended up having to see a specialist for my back every so often (every year? I don't remember) at a local children's hospital.

The typical appointment was showing up, waiting, taking new x-rays, waiting some more, going to an exam room and seeing a doctor. In the exam room, you wear a glorious paper gown and walk in front of the doctor, let him push and prod at your arms and legs to test strenth and reflexes and then the best part--wearing only underwear (no bras, ladies) he undoes your gown in the back, has you stand in front of him with your back to him and bend over. He then looks at your back, sees where you're uneven and runs his finger down your spine.

For me, then the doctor would say that I still had a bad curve that was slowly expanding, but it wasn't so bad and I didn't have the symptoms to warrant a surgery. Yay, me!

I hated these appointments. It pissed me off that I was different and had to do this. I wanted to ignore that I had this problem and go about my life. It was deformity to me. Wrong and gross and stupid. The moment I was old enough, I stopped going to see the doctor.

At This Time
In the last two years, I've started to have some problems. First, it was the way I look. My chest was expanding and not in the way a 20-something girl wants. I went from a 36 bra to a 38 without actually gaining weight. In fact, I've lost some. Very little, but still.

I can't stand the way I look from the back in most of my clothes. It takes me forever to get dressed. I have to wear button-up shirts in sizes too large so I can button them all the way. Tank tops are a nightmare. Thank God for layering!

Secondly, for the first time in my life, I hurt. By the end of the day, my back was often tense and sore. I always ask Matt to walk on it so it pops. It usually does pop on the right side, but on the left, it seems like nothing ever releases the pressure. It is so annoying. I feel like it is a volcano that needs to erupt. There's so much pressure, but never any release.

I've agonized over these two forever. I could see and feel myself getting worse and really, I've figured for awhile now that the only way to stop this is to have surgery.

I'll get to the rest later.

Breaking the news

2008-09-11T18:41:00.002-05:00

Tuesday, I went to the doctor. Wednesday, I e-mailed my family and close friends:

For those of you who do not know, I will be having surgery to correct my scoliosis either at the end of this year or beginning of next. I’m still working out time issues.

I have had increasing back pain in the last couple of years and increased problems with the way I look. I typically keep both these problems to myself, as I am for some reason embarrassed by it.

My back has continued to grow, and I found out yesterday at the doctor’s office that I am now almost two inches shorter than I was in high school. When I was growing up, my curve degree was in the 50 degree range, considered a gray area for surgery. Being young, in no pain, not being concerned with how I look and very concerned about surgery, we (mom, dad, doctors, me) decided to never go through the surgery.

Once I became old enough, I stopped going to specialists about my back. I always hated going as it was. But recently, it has become more and more apparent to me that I needed to go. Mom and I went to see a specialist yesterday.

I apparently am now out of the gray area and am in the 60-degree range. Because my degree has increased by so much in the years since my last appointment in high school, it is my doctor’s opinion that I have surgery to stop it from continuing to grow. I personally don’t want to be one of the hump-backed old ladies I see sometimes. Dr. Hostin said doing the surgery now would prevent complications that I may have if I waited til I was older to do the surgery, when I could be in more pain and not as healthy as I am right now in my life.

I know we all saw mom’s surgery and it was scary. Mine, I have been assured, will not be that bad (insert disclaimer here about the unforeseen). Dr. Hostin said we can just fix the top curve with a rod and leave the bottom curve alone. He believes the bottom curve is a compensation my body has made to manage the top curve and will go away on its own. He ordered more x-rays to confirm this. With just doing the top part, I will keep most of the range of motion and bending that I have now with my back, and the surgery won’t be as risky either.

I will move in with mom and dad at the end of the year, so they can help me out. I plan to move back to Dallas as soon as I can. It will be an easy move for me (sorry Barry!) since I won’t be able to lift anything!

I’ll have to take a month to six weeks off from work, which my boss was really understanding about and is helping me work out a plan to figure out the best way for me to do this. I’m not sure if I’ll have to wear a brace or not, but I can assure you that I will take it off no matter what the doctor says for Janet’s wedding! We’ll discuss that later!

If you have any questions about where I’m going, my doctors have a great and very informative Web site at www.consultingorthopedists.com. I recommend reading the FAQ. You can see Dr. Hostin’s page there, too. I think he’s great and warmed to him immediately when I met him. He spent as much time as I wanted with me and mom yesterday answering our questions and even showing me before and after x-rays of other patients that are similar to me and some that are much worse than me.

One final thing, I know this may seem silly to some of you, but I’m going to start a blog to talk about this and my experiences with it. There’s not a whole lot out there about people my age talking about this and this fulfills one of my life to-do list items (start a blog — check). I know I wish I could read more about what they’ve been through, but most of it is old people or kids. I could care less if anyone reads it. I’ll let you know later what the address is.

xoxo,

Megs

Background--first post, first blog

2008-09-10T22:00:00.003-05:00

My name is Megs (kind of). I'm 25 years old, at least for a few more weeks! I have scoliosis. That's what this is about.

Scoliosis is a medical condition in which a person's spine is curved side to side. Often, it also twists in and out.

My curve is an "S" curve. It's what it sounds like. My spine looks like a backwards "s". I have a large curve on the right-side of my back where my shoulder blade is. I'll try to get an image of my x-ray to post on here. My next curve is smaller and down further on the left.

My spine both curves side to side and twists in and out.

Why Blog?
I've decided to start a blog to talk about my experience for three reasons.

One, when researching what people like me have decided to do in these situations, I didn't find a lot. There was very little to no information on women my age going through this. Everything seemed to be about old women and young children. My blog is a chance for me to reach out to others like me--young, 20-something, active women with scoliosis.

Two, blogging is a release. It's my online journal, and I think it will help me to talk myself through this journey.

Finally, for my loved ones, its a chance to keep up with me and what I'm going through. Sometimes it's hard for me to share my emotions and troubles. This is their opportunity to see this side.

I plan on posting a blog at least once a week. There will be more some weeks, of course, but I will always try to have one a week.

So if you've made it through this so far, you must be a) really, really bored b)interested in my experience c)in my family.

Either way, enjoy and read on!