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.
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 ti
red 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 d
riving 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.
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.]
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.
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-
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.]
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.
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 _.jpg)
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.
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.
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 sin
ce 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.
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