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Thread: SUGGESTIONS FOR THE HOSPITAL: what helped? What would have made it better?

  1. #1
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    SUGGESTIONS FOR THE HOSPITAL: what helped? What would have made it better?

    Irina and I are planning fusion surgery at UCSF. We are gathering items and trying to figure out what we will need at home and the hospital. So-o-o-o, we or I would like everyone's suggestions for the hospital. What did you bring that was awesome? What didn't you have that you wish that you had? Any suggestions for surviving the hospital? What was the worst problem in the hospital that you could have avoided? What was the best thing that happened because you had something or made something happen? Suggestions of items to bring to the hospital?

    Thanks. Just want to be prepared as much as possible and trying to control the situation as much as possible.

    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw

  2. #2
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    Quote Originally Posted by susancook View Post
    Irina and I are planning fusion surgery at UCSF. We are gathering items and trying to figure out what we will need at home and the hospital. So-o-o-o, we or I would like everyone's suggestions for the hospital. What did you bring that was awesome? What didn't you have that you wish that you had? Any suggestions for surviving the hospital? What was the worst problem in the hospital that you could have avoided? What was the best thing that happened because you had something or made something happen? Suggestions of items to bring to the hospital?

    Thanks. Just want to be prepared as much as possible and trying to control the situation as much as possible.

    Susan
    Got my lip balm, favorite fuzzy blanket, ipad with skype, and my posturpedic pillow.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw

  3. #3
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    One of the people who've had the surgery at UCSF recommended bringing a velcro strip to tie a call button to the bed rail. She said that quite often she could not find call button and wish she had something to tie it to the bed rail to keep it in one place.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  4. #4
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    Hi Susan,

    you don't need to bring much with you.

    -The lip balm, definitely. Also a comb or brush, and toothbrush/paste.

    -several oversized sleep shirts. I bought some cheap, size large men's t-shirts and found them comfortable while in the hospital. Much better than a hospital gown.

    -two pairs of comfortable lounge pants or light-weight PJ bottoms for when you are up walking. Elastic waist is a must. Several pairs of underwear for once you are up walking.

    -A pair of easy slip-on slippers or house shoes to walk the halls in. Crocs or something similar would be good.

    -I used my iPod with headphones just a little bit and listened to a little music to try and pass time. I was too gorked to watch TV. I doubt you will be up to Skype-ing (and you will look like shit!) so I don't know about the iPad.

    -put a bright pillow case on your pillow so it is obviously not a hospital pillow and doesn't get accidentally thrown away.

    Most importantly, have someone with you as much as possible who will help you with pillows, can make sure you can reach your pain button/call light, blankets, water, etc. Someone who will not hesitate to advocate for you with the nurses if necessary about pain control. Great idea about the velcro for the call bell. It was shocking how many times this and my pain button were left out of my reach.

    You are going to make it through this, Susan! Irina, you also. We are all here for you.
    Last edited by leahdragonfly; 01-31-2013 at 05:38 PM.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  5. #5
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    Thanks, Gayle. When people say that you can't take a shower for two weeks - do they mean two weaks after the surgery and NOT two weeks after being discharged from the hospital (hope not or it will be three weeks)? And after you're cleared for the shower, you can take it every day, right?
    Last edited by Irina; 01-31-2013 at 06:05 PM.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  6. #6
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    showers

    Hi Irina,

    I doubt you will have to wait two weeks. If you did, however, it would be two weeks from the date of surgery.

    I was allowed to take a shower and wash my hair once I got home. It was like heaven, both times! You will be able to take showers as often as you wish. The first couple of weeks, taking a shower will be absolutely exhausting and will be your major accomplishment for the day.

    You might bring along a few pads in case you get your period, also. Something you buy yourself will be much more comfortable than the gigantic hospital OB pads.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  7. #7
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    Location
    San Jose, CA
    Posts
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    Is it Ok to have toenails done just before the surgery or doctors don't want any nail polish?

    What people usually do the day before the surgery? I've done my share of freaking out, but since I booked the date I am doing surpisingly well and just want to get it over with.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  8. #8
    Join Date
    Feb 2011
    Location
    Lilburn, GA
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    Hospital Stay

    I was so completely and utterly out of it, I didn't need or want a thing. I brought an iPad thinking I would want to go online and write emails. None of that happened. The only thing I wish I had done is braid my hair or somehow contain it. I have medium long hair and it got so tangled up and with the wires and not being able to move, it was very unpleasant.

    Best to both of you!
    50 years old!!!!!
    Wore Milwaulkee Brace 1976-77
    Original curve 36 degrees ( measured in the 70s)
    Advanced to 61 degrees 01/2011
    Surgery 07/11/2011
    Fused T1-L2 (curve now in the 20s!)

  9. #9
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    Quote Originally Posted by leahdragonfly View Post
    Hi Susan,

    you don't need to bring much with you.

    -The lip balm, definitely. Also a comb or brush, and toothbrush/paste.

    -several oversized sleep shirts. I bought some cheap, size large men's t-shirts and found them comfortable while in the hospital. Much better than a hospital gown.

    -two pairs of comfortable lounge pants or light-weight PJ bottoms for when you are up walking. Elastic waist is a must. Several pairs of underwear for once you are up walking.

    -A pair of easy slip-on slippers or house shoes to walk the halls in. Crocs or something similar would be good.

    -I used my iPod with headphones just a little bit and listened to a little music to try and pass time. I was too gorked to watch TV. I doubt you will be up to Skype-ing (and you will look like shit!) so I don't know about the iPad.

    -put a bright pillow case on your pillow so it is obviously not a hospital pillow and doesn't get accidentally thrown away.

    Most importantly, have someone with you as much as possible who will help you with pillows, can make sure you can reach your pain button/call light, blankets, water, etc. Someone who will not hesitate to advocate for you with the nurses if necessary about pain control. Great idea about the velcro for the call bell. It was shocking how many times this and my pain button were left out of my reach.

    You are going to make it through this, Susan! Irina, you also. We are all here for you.
    Gayle, you underestimate my inherent beauty! Maybe you are right about my looking like shit on Skype. And I am greatly overestimating my ability to do anything postoperative. I was in severe lower back pain last night after doing the art walk in Puerto Vallarta. As I walked back to the bus stop, I thought, how much more could postoperative pain be? Well, guess that I will see, huh?

    I have been pool swimming as you suggested. It helps me to have time for those great self conversations and is great exercise too.

    Thanks for your suggestions.

    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw

  10. #10
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    Quote Originally Posted by Marina63 View Post
    I was so completely and utterly out of it, I didn't need or want a thing. I brought an iPad thinking I would want to go online and write emails. None of that happened. The only thing I wish I had done is braid my hair or somehow contain it. I have medium long hair and it got so tangled up and with the wires and not being able to move, it was very unpleasant.

    Best to both of you!
    Note to self, braid hair. Thanks. Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw

  11. #11
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    Jun 2011
    Location
    Southern CA
    Posts
    2,260
    Quote Originally Posted by Irina View Post
    Is it Ok to have toenails done just before the surgery or doctors don't want any nail polish?

    What people usually do the day before the surgery? I've done my share of freaking out, but since I booked the date I am doing surpisingly well and just want to get it over with.
    With all of my surgeries, all of my surgeons would not let me have nail polish
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  12. #12
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    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
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    I took very little to hospital and needed even less. Clean change of nightwear/tracksuit, slip on rubber soled slippers, toothpaste, toothbrush, hairbrush, shampoo and conditioner, robe. I took a book and some music and didn't use them. I did watch a bit of tv but because the medication knocked me out, I slept most of the time.

    I showered and shampooed on day 3 or 4, can't be sure now, but it was after all the lines were taken out. Having that shower and shampoo was the best part of the hospital stay. Made me feel normal, even more than walking.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  13. #13
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    Location
    Indianapolis area
    Posts
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    Dr. Lenke's patients aren't allowed to shower for two weeks from the date of surgery. Many people get their periods shortly after surgery. I brought a squirt bottle, which helped with washing while on the commode. Also, they gave me these no-rinse shampoo kits that were awesome. They come in a bag, and you can get them at a drugstore. Your hair gets wet, but you don't have to rinse it out.

    I did use my iPhone and headphones. (iPhone= #1 recovery item!!!) For the hotel stay after the hospital, I had an eggshell foam mat for the bed.

    My husband and mom were essential. I had someone with me round the clock. Two things. I thought I was having a heart attack when I woke up from anesthesia. Go figure--me with the anxiety. They did the various tests to rule out that I wasn't. But I continued to have pain in my chest for a few days. I think it was from my ribs shifting to match my back. They said it could also have been from the bolster you lie on during surgery.

    Also, they put me on a critical floor after surgery because ICU was full. The next day, the nurses tried to remove the catheter to my bladder. I pitched a fit because that would have meant I would have had to get up every time I needed to go to the bathroom ( which is a lot because they pump you full of fluids). I couldn't stand yet, let alone walk to the bathroom. Turned out Dr. Lenke did NOT want the catheter removed. So, the lesson here is don't be afraid to question things if something seems off. I made them call Dr. Lenke, and glad I did!

    Only other thing was slippers and I wore the same loose-fitting sweatsuit out that I wore in. Make sure your clothes have give because you likely will be swollen. I used a double- layer tank top instead of bras for a while. Some people prefer button-down shirts, but I didn't have a problem getting them over my head. (T2 people might have a harder time.)

    Honestly, I slept most of the time in the hospital and don't remember much of it. Don't be afraid to ask for more pain meds if your pain isn't well controlled. It should be!!

    Best,
    Evelyn
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  14. #14
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    Quote Originally Posted by susancook View Post
    Gayle, you underestimate my inherent beauty! Maybe you are right about my looking like shit on Skype.
    Susan

    Hi Susan,

    Sorry, I was being a little flippant, but what I meant to say was, you will not be looking your best after surgery! Which is not to say you will be too vain to Skype, what I meant was that it is doubtful that you will feel up to Skype-ing until after you get home.

    I'm glad to hear you're enjoying the pool exercise.

    Gayle
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  15. #15
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    Location
    San Jose, CA
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    Quote Originally Posted by leahdragonfly View Post
    Hi Susan,

    Sorry, I was being a little flippant, but what I meant to say was, you will not be looking your best after surgery! Which is not to say you will be too vain to Skype, what I meant was that it is doubtful that you will feel up to Skype-ing until after you get home.

    I'm glad to hear you're enjoying the pool exercise.

    Gayle
    Gayle,

    I am sure Susan was joking about underestimating her inherent beauty. I personally love your straight talk - we're all in the same boat here.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

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