PDA

View Full Version : SUGGESTIONS FOR THE HOSPITAL: what helped? What would have made it better?



susancook
01-31-2013, 02:46 PM
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

susancook
01-31-2013, 02:49 PM
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.

Irina
01-31-2013, 04:29 PM
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.

leahdragonfly
01-31-2013, 04:33 PM
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.

Irina
01-31-2013, 05:02 PM
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?

leahdragonfly
01-31-2013, 05:11 PM
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.

Irina
01-31-2013, 05:57 PM
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.

Marina63
01-31-2013, 07:10 PM
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!

susancook
01-31-2013, 07:42 PM
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

susancook
01-31-2013, 07:44 PM
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

mabeckoff
01-31-2013, 08:13 PM
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

JenniferG
01-31-2013, 08:38 PM
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.

Confusedmom
01-31-2013, 11:02 PM
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

leahdragonfly
02-01-2013, 08:21 AM
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

Irina
02-01-2013, 11:21 AM
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.

titaniumed
02-01-2013, 02:02 PM
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.



I feel the same way. The only thing I wanted was another shot....

We have had posters that have posted a few hours after surgery.....I on the other hand did not e-mail or post for months. It had to be really important for me to find my glasses and sit on major medications and try to make a decision and write something. I know that many feel the same as me on this. Computing and television were NOT a priority. Silence was a priority.

When Led Zeppelin played a concert at Kezar Stadium in Golden Gate park on June 2nd 1973, the patients at UCSF were complaining about the noise..... I canít say I blame them, but after all, it was Led Zeppelin......I would have grabbed my walker and walked over there. (smiley face)

Ed

Doodles
02-01-2013, 02:15 PM
I agree with the other posters. The first week was a total blur in the hospital and the 2nd week in rehab wasn't much better. I could have gone with nothing I think but a toothbrush. You won't need entertainment. You can't stay awake that long or really concentrate on anything! Just think of it as a BIG nap. Janet

JenniferG
02-01-2013, 04:11 PM
I agree with the other posters. The first week was a total blur in the hospital and the 2nd week in rehab wasn't much better. I could have gone with nothing I think but a toothbrush. You won't need entertainment. You can't stay awake that long or really concentrate on anything! Just think of it as a BIG nap. Janet

Haha! That's exactly what it was for me. One big nap!

"Confusedmom

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 guess I was allowed to shower early because I had no external stitches. I was glued shut. They removed the long dressing on day 3 or 4 which I remember I was a little concerned about but they assured me I was properly closed.

susancook
02-01-2013, 11:22 PM
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

I was trying to be funny. You are a role model for me. I look awful in the morning without surgery. I will keep up the swimming. Susan
Send me a pm and tell me your Skype name!

susancook
02-01-2013, 11:31 PM
I was reading that many people cannot lie on their side after surgery and must sleep on their back. I have never slept on my back because I wake up after a short time as my tongue slides back and obscures my trachea. So, what is happening after surgery?
Susan

JenniferG
02-01-2013, 11:59 PM
I was reading that many people cannot lie on their side after surgery and must sleep on their back. I have never slept on my back because I wake up after a short time as my tongue slides back and obscures my trachea. So, what is happening after surgery?
Susan

I was always a side-sleeper and still am, but after surgery, I woke up on my back. In ICU, I asked if I was allowed to lie on my side because I was vaguely uncomfortable on my back and the nurse brought a helper to help roll me to my side. Unfortunately that was even more uncomfortable so they rolled me back. After that, I slept on my back for about a month, then gradually went back to sleeping on my side with support from various pillows, propping me up.

So you might need to sleep on your back for a short while, but perhaps if you have more than one pillow, slightly propped up, you might find the tongue problem doesn't happen. I swear by my U shaped pillow, it wraps round me and supports me. I still use it.

JuliaAnn
02-02-2013, 12:05 AM
Susan, I had not slept on my back in over 15 years because, oddly, I would get nightmares and quickly wake with my heart thumping. That was one of my worries when I went in to surgery. To my surprise, everything changed after surgery. I slept soundly on my back, no nightmares at all and felt peaceful and as comfortable as could be expected.

In the hospital, any time I wanted to sleep on my side, I would ring for the staff and someone would come help me position in the bed. They put a lot of rolled up blankets pressed against my back for support and placed another blanket between my knees. My legs were kept in inflating cuffs to help with blood circulation and I was still able to be turned on my side, even tethered like that. The staff at Duke Raleigh is amazing and I never had to wait longer than about a minute or two after pressing the buzzer for help.

Once home, my bed wasn't nearly as comfortable but I was able to turn my head to one side and bunch up the pillow against my face for more support while on my back. Since my nose usually gets congested when I lay on my right side, I would turn my face to my left side and be able to breathe well. Having the pillow bunched up against the side of my head helped my neck from getting sore too.

What will be the extent of your fusion? I am fused from T1 to sacrum and I'm still able to turn my head almost fully to the side while on my back. With a lot of pillow support, I was able to sleep on my side for about an hour around 4 weeks post-op. My hips and ribs bothered me the most because my mattress is super firm so it took over two months till I was able to sleep on my side comfortably for more than 2 hours at a time. I still sleep more on my back than any other position now.

Marina63
02-02-2013, 06:57 AM
I was reading that many people cannot lie on their side after surgery and must sleep on their back. I have never slept on my back because I wake up after a short time as my tongue slides back and obscures my trachea. So, what is happening after surgery?
Susan

Susan, please try to remember that everyone is different. I am an avid side sleeper and slept on my side immediately after surgery. I had the nurses and my husband running every two or so hours to flip me from side to side. I was labeled a "mover".

I couldn't get up out of bed much less take a shower in the five days I was in the hospital while others say they showered 2-3 days after surgery. Your experience will be specific to you. It's good to get some ideas about what others have gone through but try not to worry too much. I didn't read this forum until after my surgery. I'm glad I didn't. I would have cancelled my surgery if I had : ))

titaniumed
02-02-2013, 01:27 PM
I was reading that many people cannot lie on their side after surgery and must sleep on their back. I have never slept on my back because I wake up after a short time as my tongue slides back and obscures my trachea. So, what is happening after surgery?
Susan

Scar position has a lot to do with this. Tongue sliding back almost sounds like sleep apnea......

I slept on my left side for around a year. My right shoulder was broken up, and the bandage on the posterior incision is thick after your surgery. This will heal and toughen up in time, as all scars do.

If there is a problem, its stomach sleeping with full fusion. I can do it now, but what happens is the neck is turned at 90 degrees and end up rolling out of that position anyway in a short time. I will never wake up on my stomach.

Soft down pillows are best because they can be easily shaped. You want to maintain a neutral neck position. Sleeping with your neck bent isnít a great idea and you will feel it the next morning.

Sleeping is hard after surgery....... Getting comfortable is hard after surgery......Sitting is hard after surgery.
After you heal some, all these things gradually improve in time......you take it one day at a time.

Hospital beds are the worst.....I was complaining big time about my bed. It was probably a $50,000 bed, and sleeping in a BMW would have been easier. Ever try sleeping in a BMW? Its impossible.

Ed

susancook
02-02-2013, 02:33 PM
Susan, I had not slept on my back in over 15 years because, oddly, I would get nightmares and quickly wake with my heart thumping. That was one of my worries when I went in to surgery. To my surprise, everything changed after surgery. I slept soundly on my back, no nightmares at all and felt peaceful and as comfortable as could be expected.

In the hospital, any time I wanted to sleep on my side, I would ring for the staff and someone would come help me position in the bed. They put a lot of rolled up blankets pressed against my back for support and placed another blanket between my knees. My legs were kept in inflating cuffs to help with blood circulation and I was still able to be turned on my side, even tethered like that. The staff at Duke Raleigh is amazing and I never had to wait longer than about a minute or two after pressing the buzzer for help.

Once home, my bed wasn't nearly as comfortable but I was able to turn my head to one side and bunch up the pillow against my face for more support while on my back. Since my nose usually gets congested when I lay on my right side, I would turn my face to my left side and be able to breathe well. Having the pillow bunched up against the side of my head helped my neck from getting sore too.

What will be the extent of your fusion? I am fused from T1 to sacrum and I'm still able to turn my head almost fully to the side while on my back. With a lot of pillow support, I was able to sleep on my side for about an hour around 4 weeks post-op. My hips and ribs bothered me the most because my mattress is super firm so it took over two months till I was able to sleep on my side comfortably for more than 2 hours at a time. I still sleep more on my back than any other position now.

Julia Ann:! Fusion will be T3 to sacrum. bummer........Susan. Ps: thanks for all of your information. It seems that I am grasping at straws in trying to somehow control the surgery situation.

susancook
02-02-2013, 02:38 PM
Scar position has a lot to do with this. Tongue sliding back almost sounds like sleep apnea......

I slept on my left side for around a year. My right shoulder was broken up, and the bandage on the posterior incision is thick after your surgery. This will heal and toughen up in time, as all scars do.

If there is a problem, its stomach sleeping with full fusion. I can do it now, but what happens is the neck is turned at 90 degrees and end up rolling out of that position anyway in a short time. I will never wake up on my stomach.

Soft down pillows are best because they can be easily shaped. You want to maintain a neutral neck position. Sleeping with your neck bent isnít a great idea and you will feel it the next morning.

Sleeping is hard after surgery....... Getting comfortable is hard after surgery......Sitting is hard after surgery.
After you heal some, all these things gradually improve in time......you take it one day at a time.

Hospital beds are the worst.....I was complaining big time about my bed. It was probably a $50,000 bed, and sleeping in a BMW would have been easier. Ever try sleeping in a BMW? Its impossible.

Ed

Thanks....guess I will just play this by ear. Susan

JenniferG
02-02-2013, 02:44 PM
Agreed re the hospital bed. Well the mattress anyway. It had a big hollow from having thousands of bottoms sitting upright which was ok when I was awake and the head of the bed was up, but at night when I lay the bed back down, my now straight, rigid back hovered over this damned hollow. I complained, they brought another mattress; that too had a hollow. Then my partner marched in with a huge roll on his shoulder - he brought in a very thick foam mattress overlay. I fully expected the hospital to object but they didn't. It helped, but despite being thick and firm, it still sunk into that hollow.

Getting home on Day 19, I was never so happy with my lovely, comfortable bed! And that was the end of my surgical pain. Psychological because I'd finally got home? Or a level, comfortable bed? I don't know.

leahdragonfly
02-02-2013, 02:44 PM
Hi Susan,

I am a side sleeper too, and I continued to sleep on my side after surgery. I was extremely uncomfortable and unable to sleep in my own bed, because it was too soft. It was a Temperpedic, and it had a slight body impression in it that made it so it wasn't perfectly flat. It felt way too soft and unsupportive after my first surgery (T8-sacrum/posterior). I had a rented hospital bed that was very firm and flat, and I slept on it for the first 5-6 weeks before I could stand my own bed.

After my revision I slept for about a week on the hospital bed, but I was able to return to my own bed after that, and sleep on my side.

Almost everyone seems to go through a period of very poor sleep/insomnia after surgery. It is normal and will improve. You will sleep whenever you can.

Ed gave you good advice about the many soft pillows. I used one between my knees, and a king-sized one behind my back (I still use this). It was very hard/painful for me to turn over in bed the first few weeks. What I did in my hospital bed was have a pillow on each end, and I kept the blankets untucked. When I needed to turn over several times per night, I would logroll/pivot up into a sit, then pivot/logroll down onto my other side. This worked really well for me.

I am not sure about UCSF, but at OHSU Dr Hart sends all his patients to physical therapy about a week before surgery, to learn how to move correctly within your activity restrictions. They will make sure you can logroll correctly and do the other things you need to do in the early days post-op. They also gave me a small guide about progressive activity in the first 8 weeks post-op. This might be something to ask about at UCSF. I think it is helpful for everyone.

One foot in front of the other my friend, you can do this! I don't Skype but I am always happy to hear from you via e-mail.

Take care,

tae_tap
02-02-2013, 03:39 PM
Susan,
I couldn't sleep at night and didn't want to bother my husband or mother in law when they stayed so my iPad was a nice addition to have. I watched showes, or listened to them because I couldn't focus well.

Chap stick for sure! And normal toiletries. I also took a robe for when all the tubes and iv's were removed (although, that didn't happen till the day I went home. I also had the cath in until the night before I went home.)

Don't over think things. If you don't bring it, they have it. Just plan on sleeping, walking, sleeping, walking, and more sleeping. Maybe add a few stairs to climb in pt if you had a therapist like mine, lol!

I pray daily for you!
Tamena

susancook
02-02-2013, 04:37 PM
Hi Susan,

I am a side sleeper too, and I continued to sleep on my side after surgery. I was extremely uncomfortable and unable to sleep in my own bed, because it was too soft. It was a Temperpedic, and it had a slight body impression in it that made it so it wasn't perfectly flat. It felt way too soft and unsupportive after my first surgery (T8-sacrum/posterior). I had a rented hospital bed that was very firm and flat, and I slept on it for the first 5-6 weeks before I could stand my own bed.

After my revision I slept for about a week on the hospital bed, but I was able to return to my own bed after that, and sleep on my side.

Almost everyone seems to go through a period of very poor sleep/insomnia after surgery. It is normal and will improve. You will sleep whenever you can.

Ed gave you good advice about the many soft pillows. I used one between my knees, and a king-sized one behind my back (I still use this). It was very hard/painful for me to turn over in bed the first few weeks. What I did in my hospital bed was have a pillow on each end, and I kept the blankets untucked. When I needed to turn over several times per night, I would logroll/pivot up into a sit, then pivot/logroll down onto my other side. This worked really well for me.

I am not sure about UCSF, but at OHSU Dr Hart sends all his patients to physical therapy about a week before surgery, to learn how to move correctly within your activity restrictions. They will make sure you can logroll correctly and do the other things you need to do in the early days post-op. They also gave me a small guide about progressive activity in the first 8 weeks post-op. This might be something to ask about at UCSF. I think it is helpful for everyone.

One foot in front of the other my friend, you can do this! I don't Skype but I am always happy to hear from you via e-mail.

Take care,

You are an awesome friend. Thanks for the sleep info and other stuff. Susan

susancook
02-02-2013, 04:55 PM
Susan,
I couldn't sleep at night and didn't want to bother my husband or mother in law when they stayed so my iPad was a nice addition to have. I watched showes, or listened to them because I couldn't focus well.

Chap stick for sure! And normal toiletries. I also took a robe for when all the tubes and iv's were removed (although, that didn't happen till the day I went home. I also had the cath in until the night before I went home.)

Don't over think things. If you don't bring it, they have it. Just plan on sleeping, walking, sleeping, walking, and more sleeping. Maybe add a few stairs to climb in pt if you had a therapist like mine, lol!

I pray daily for you!
Tamena

Tamena, you know me well! One way that I have chosen to control my surgery situation, which seems overwhelming to me, is to plan everything and to control the things that I can control. Deep down, I am a little bit scared. I do have mega confidence in my surgeon, but too many pieces seem to be still left unsaid. Due to distance, I have only seen her once. Granted she did take an hour with me and my son, but I am still confused on exactly what will happen. I originally said to myself, that once I made the date for the surgery, I would just relax and trust my surgeon. That sounded great on paper, but I cannot feel it as much as I try.

I went out to Saturday market today in Puerto Vallarta with my husband. I sat down so many times that I decided to time my pain. After sitting down for 10 minutes, I can go for 7 minutes before I start to be get a feeling of severe tightness in my lower back and sciatic pain on the right. At ten minutes, my right thigh pain is unbearable and the back pain/tightness in unbearable. Then I sit again. It has become quite apparent that I do need surgery. I cannot sit down every 10 minutes for the rest of my life!
Not more to say. I am confused. Susan

JuliaAnn
02-03-2013, 12:46 AM
Susan, you said " I cannot sit down every 10 minutes for the rest of my life!" Oh my goodness, you poor dear! If that is how you are functioning now, then you're going to be thrilled with how things work out after surgery! I didn't time my walking before surgery but I couldn't walk long at all. I couldn't sit long, I couldn't lay down long, basically there was no time I was comfortable. Surgery changes everything. You are going to be SO glad! I hope you post again several weeks after your surgery. We all will want to know how you are doing.

Suggestions for the hospital... I had my sons write in a notebook starting the day of surgery and during the week I was in the hospital. They wrote notes of when I first walked, things I said, etc, at my request because I knew I would never remember afterward. I slept a lot. I fell asleep mid-sentence a lot. I remember talking to my mom on the phone and she said "you're falling asleep on me, aren't you" but I couldn't answer because I was falling asleep so my son took the phone and talked to her. You will be doing a LOT of sleeping after surgery. That will be good. And there will be times that you don't even remember later. In my notebook, the boys had written that I practiced stepping in an out of a tub during therapy. I have absolutely no memory of that.

I continued to write in the notebook occasionally for the next three months after surgery. One time I wrote a couple things I wish I had done differently:
- - - ALL pre-surgical patients should do deep breathing exercises at least 1 month before surgery. I experienced a "stitch in side", very severe within seconds of standing. Deep breathing exercises would have helped to greatly reduce rib pain!
- - - Eat a soft or liquid diet 2 days before surgery. Pick soft items from the hospital menu, especially fruits and vegetables for the first week to help with constipation.
- - - Let nurses know immediately that you want a low-sodium (cardiac) menu. Less sodium = less thirst later.
- - - Leg compression wraps helped VERY much for fibromyalgia leg pains since I walked so little during the hospital stay.
- - - Rent an adjustable hospital bed just like the one at the hospital. Hard bed at home was miserable!

When the nurses or therapists weren't working with me, I didn't do a single thing at the hospital other than fall asleep repeatedly for a week. I didn't want TV or anything. I just asked for pain medication and slept. It felt good to sleep because I slept poorly for months before surgery any way.

Every patient is different and it is impossible to predict what you will want to do or what you will be able to do after surgery. It's best to be prepared for activities such as reading if you want, so take a book or other activity. But also expect that you just might want to sleep or visit with friends or family instead.

susancook
02-03-2013, 12:37 PM
Susan, you said " I cannot sit down every 10 minutes for the rest of my life!" Oh my goodness, you poor dear! If that is how you are functioning now, then you're going to be thrilled with how things work out after surgery! I didn't time my walking before surgery but I couldn't walk long at all. I couldn't sit long, I couldn't lay down long, basically there was no time I was comfortable. Surgery changes everything. You are going to be SO glad! I hope you post again several weeks after your surgery. We all will want to know how you are doing.

Suggestions for the hospital... I had my sons write in a notebook starting the day of surgery and during the week I was in the hospital. They wrote notes of when I first walked, things I said, etc, at my request because I knew I would never remember afterward. I slept a lot. I fell asleep mid-sentence a lot. I remember talking to my mom on the phone and she said "you're falling asleep on me, aren't you" but I couldn't answer because I was falling asleep so my son took the phone and talked to her. You will be doing a LOT of sleeping after surgery. That will be good. And there will be times that you don't even remember later. In my notebook, the boys had written that I practiced stepping in an out of a tub during therapy. I have absolutely no memory of that.

I continued to write in the notebook occasionally for the next three months after surgery. One time I wrote a couple things I wish I had done differently:
- - - ALL pre-surgical patients should do deep breathing exercises at least 1 month before surgery. I experienced a "stitch in side", very severe within seconds of standing. Deep breathing exercises would have helped to greatly reduce rib pain!
- - - Eat a soft or liquid diet 2 days before surgery. Pick soft items from the hospital menu, especially fruits and vegetables for the first week to help with constipation.
- - - Let nurses know immediately that you want a low-sodium (cardiac) menu. Less sodium = less thirst later.
- - - Leg compression wraps helped VERY much for fibromyalgia leg pains since I walked so little during the hospital stay.
- - - Rent an adjustable hospital bed just like the one at the hospital. Hard bed at home was miserable!

When the nurses or therapists weren't working with me, I didn't do a single thing at the hospital other than fall asleep repeatedly for a week. I didn't want TV or anything. I just asked for pain medication and slept. It felt good to sleep because I slept poorly for months before surgery any way.

Every patient is different and it is impossible to predict what you will want to do or what you will be able to do after surgery. It's best to be prepared for activities such as reading if you want, so take a book or other activity. But also expect that you just might want to sleep or visit with friends or family instead.

Love the diary idea during drug haze phase in hospital. Thanks for sharing great ideas and your experiences. Susan

gardenia
02-09-2013, 10:26 PM
You will need the slippers and a robe to cover up when they make you get up and walk.

a gun to shoot the beeping machine when the IV lines have bubbles - you can call the nurse but it will take like an eternity and they are very loud.

a person with you at night (preferably always) because the staff is less than during the daytime

I discover buckwheat hull pillows and it was a savior as it accommodates my neck and head much better than the 300 pillows they have that are covered with plastic.

The dry shampoo is great the first week but I was not allowed to shower for 2 weeks so the second dry shampoo added to the first makes your scalp feel like there are bugs growing. I would walk to the sink and use a wet face towel to wet my head in the morning over and over.


The best was a handheld little hose that are made to attach to the toilet pipe from the wall. My husband reluctantly installed one as I remember growing up in Panama and everyone would have a bidet or a hose. Since you can't really wipe yourself because (at least my arms are about 5 inches too short) and without bending or twisting etc... the hose gadget is the best best thing EVER to rinse both front and back!!!

Susie*Bee
02-10-2013, 04:32 PM
Susan-- similar to JuliaAnn, my husband kept a notebook of everything in the hospital and also took pictures... some others have taken videos to help others along or just to chronicle their journey. As far as what I actually needed in the hospital-- not much! I took things like a bathrobe and slippers, but they just used another dressing gown turned the opposite direction for a "bathrobe" for when I was walking the halls... and they really wanted me to use their traction socks to walk in, so no slippers. I was not at all interested in any books or tv or (if I had had anything of the sort with me) electronics. I did not need anyone with me at night on the nights my husband did not stay, as the nurses at my hospital were very attentive. I guess that varies a lot. We lived 2.5 hours away and he needed to check on things at work some of the time. I was perfectly fine on my own. I did not even think about brushing my teeth or doing anything like my hair for awhile (aughhh!) -- it just hadn't occurred to me until a nurse gently mentioned my teeth. Hee hee. If you look at my hospital pictures you can tell it didn't matter to me what I looked like at all until the very end of my 11 day stay. (big smile!) Everyone is different.

I too didn't shower for the time I was in the hospital-- just sponge baths. When I got home I had a shower seat and shower wand, and that was nice, but didn't use it for a few more days.

We kept a separate daily pill journal on the kitchen counter where the meds were so we couldn't get confused about whether I had taken mine or not.

The notebook I had in the hospital is the same one I had used previously for my visits to the surgeon, as suggested by David Wolpert. I still use it and jot down any questions/concerns for my next appt. and write down anything he says that I think is something I should remember. It's so easy to look back to my hospital time and see when they started having me climb stairs, or when they fitted me for my brace, etc. Since I also kept the med info, I can see when my dosages changed and when I weaned off...

In general over the years of watching what people write on the forum, most have said they took way more than what they needed or used (like PJs). Most said they wished they had chapstick. I am an avid reader but there is no way I would have read a book (although I took some). On the other hand, I remember someone who was on her phone or laptop within hours.

Sleeping-- I had always been a tummy sleeper and a side sleeper. Absolutely never a back sleeper. After my surgery I could not do either of those. It was not until this past year that I could sleep on my side. But I found sleeping on my back quite peaceful. I cannot get to a tummy position, I think because I go up to T2. It even doesn't work with no pillow. Oh well. The nurses in the hospital were surprised I couldn't handle sleeping on my side, so I'm sure you'll have no problem.

susancook
03-09-2013, 12:12 AM
Surgery is 11 days away and I am reviewing hospital survival. Irina is doing well now postoperative....thank goodness. I do not personally know anyone who has had surgery with Dr. Hu, so her success was very reassuring. Joanne never hooked me up with other women my age who have had surgery with Dr. Hu. I will send her an email tomorrow and maybe she can still connect me up next week, at least we can talk by phone, maybe a lunch together. I have never seen anyone move with a fusion to the sacrum and must rely on Irina's demo as she had observed. Sorry that I didn't watch Gayle move when I saw her at OHSU, but that was so long ago and I was in semi-denial about surgery.

I will be in Oakland for a week before surgery and have time to swim more at the Y as well as do last minute things.

I am still hoping for a private room, so that either my husband, brother, son, or daughter will be able to stay with me. When I do not feel well, I am sure that I make a very poor roommate, so I hope that I have a single room. My relatives have learned to love and tolerate me...besides many of them owe me!

I have been bending my back as much as possible as my last efforts to be flexible. I used to do backbends and kick overs, so am fairly flexible. I was on a high school gymnastics team (in the early 1960s). I also used to do flip turns in the pool. I will try those again in the week before surgery for old time's sake. The PT at OHSU that I saw said that I would do well postoperatively since I was so flexible. We'll see!

Still cannot envision the toilet hygiene with a fusion to sacrum. I bought the hygiene wand that is sold at Walgreens.

So, anyone having anymore recommendations, please add them. So far, the important things seem to be: robe, slippers, lip stuff, iPad, something to tie the buzzer, a relative in my room to help me, big t shirts, pants with elastic, toothbrush/paste, comb, brush, braided hair, and a journal for relatives to write in while I am recovering. That's probably overkill.

Thanks again to all that survived the postoperative experience with varying amounts of grace and have shared their experiences, Susan

golfnut
03-09-2013, 08:22 AM
Susan,
Wow! I was just reading about your flexibility. I would imagaine that you will get an amazing correction. My back was already fusing in the crooked position which is why I needed so many osteotomies in order to get as straight as possible. Dr. Lenke's office had a "spine kit" that I purchased. I truly never thought I would need it, but the kit had long, plastic tipped tongs to use for wiping (I hate being so graphic) I definitely needed to use it for quite a while. I also bought lots of packages of flushable wipes. I remember reading in David Wolpert's book, at least I think that's where I read it, that as he went through recovery and improved in so many ways, that it was a celebration each time he eliminated items he no longer needed. First, it was the pain pills, then the elevated toiled seat, then the multitude of pillows every place, the tongs, the sock aide, the long handled shaver, the the grabbers in every room, etc. The road to total recovery is not a quick one, but for me, was one of many small celebrations along the way. Getting back to playing golf after waiting 15 months was pretty darn special, too. My first round of golf video is in my signature if you are interested. Good luck. You are prepared!

jane d
03-09-2013, 09:26 AM
Susan, I think I have mentioned before, but I found a "sippy" cup with a lid to be very helpful after surgery for a couple of weeks after surgery. One like little children use. Drinking with a straw was harder when lying down after surgery as it would drip somewhat. Someone else suggested this on the forum several years ago. I never had a need for the hygiene wand and maybe you won't either.

I have been and will continue praying for you.
Jane

golfnut
03-09-2013, 06:57 PM
Sorry, I just realized your thread was about what to take to the hospital.

JuliaAnn
03-09-2013, 08:14 PM
Like Jane mentioned, I used a cup with a bendy straw but had to be too careful about tipping the cup for a couple weeks. I now keep a sport water bottle by the bed all the time.
I use a Camelbak-Eddy-Bottle, 24 oz. It's easy to drink from even while lying down. I'm not sure if a hospital allows a drink bottle or not but you might check. It's so much easier to drink from than a cup with a bendy straw.

Confusedmom
03-10-2013, 12:37 AM
I took headphones so I could listen to audiobooks on my iPhone. Also a camera (well, your relatives should have that). Depending on your showering rules, possibly no-rinse shampoo. They may also have it for you.

Best wishes!