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View Full Version : A few questions for the aftercare process



Geish
11-12-2007, 09:31 AM
I am scheduled for surgery on December 13 with fusion from T4 to at least L4 but maybe to the Sacrum. I am supposed to be home by the18th and right now the plan is to have my two daughters help take care of me. The oldest is almost 20 and the youngest is 15.
I know I will need a lot of help and should be having about 2 hours of in home care a day from a nurse, but will my girls be able to handle taking care of me the rest of the time? Will I be taking meds in the middle of the night, necessitating one of them sleeping by me? Will they have to wake up all night long to help me or should I be sleeping through the night? How long until I will be able to climb stairs with out assistance (I have 2 sets of 9, one to get in the house and one to get to the bedrooms)? Will the 20 year old be able to care for me for a week by herself if the younger goes to her dad's for Christmas (10 days post op, right now he really wants to take her for a week but has agreed that if I need her she can stay and help me)?
Thanks for any help you can give me. I don't a have a single worry about the surgery itself, but I am a bit stressed about the after care and recovery period. I only have full time help for 5 weeks and then my oldest daughter goes back to school and my younger daughter will be back in high school after 3 weeks of helping me.

Geish
46 years old. Diagnosed at 13
+30* to right thoracic
+60* to left thoracic/lumbar
+30* to right lumbar
Surgery scheduled for Dec 13, 2007

Susie*Bee
11-12-2007, 10:57 AM
Dear Geish-- How exciting that you're about to get this over with! I tried to think of it as my BIG adventure, and I made a scrapbook of it all. I can't help you too much, because my husband has been here for me, doing so much. But there are some things that I could suggest, in getting ready ahead of time. My fusion is of similar length to yours--T2-L4, so some of your challenges may be similar to mine.

Do you know how long (as in days/weeks) you will have the nurse helping you? She can help with the major things like showering. Five days in the hospital sounds short to me for such a big surgery. My surgeon had said at least 5 days, probably longer. I was in for 11 days. People respond differently though, so you may be able to go home then. I had developed an ileus (stomach doesn't wake back up when it should)--so I didn't get to eat or drink anything for 5 days. I was doing great otherwise, they said. But it still was sooooo slow to be able to do anything. It's hard work just to shuffle over to the bathroom after they remove the catheter, etc. Toward the end of my time in the hospital, we were seriously pursuing the idea of going to a rehab place for another week or so, but then I turned a corner and decided I could go straight home. That could be an option for you, if you feel like you aren't ready to be home yet. As far as stairs go, by the time I was released, I could go up 10 stairs, albeit with a cane and very slowly. You probably will not want to be going out much for awhile anyway, but your 9 inside steps will probably be do-able, although you might not want to do them very much.

I found Appendix A -- "Getting Your House and Life in Order," from David K. Wolpert's book Scoliosis Surgery: the Definitive Patient's Reference, to be invaluable. It covers a lot of territory, even if you'll be on your own. My husband did all the cooking and things like that, which I would imagine your girls can do while they're there. You might want to stock up on supplies for easy-to-prepare meals. If you can manage it, it might be good to arrange for someone to do the cleaning and laundry for at least the first few months or so. Even at my 6 month's check-up, I was told I still shouldn't do any bending or twisting-- and still just light housecleaning. (Doesn't bother me any!) And not to vacuum. I got a duster with a handle, in case I feel like it's getting too bad here, and that works out ok except for things that are too low. You should probably try to find a friend or some way to have someone do your grocery shopping for awhile.

I have a chair, with arms, (easier to get in and out of) in front of my dresser, and that helps me access most of the drawers--the clothes that I wear most of the time are in the upper drawers. It's really hard to open the lower drawer--I have to hook the handles with my cane and reacher and pull slowly, then use the reacher to grab out the clothes I want, without messing up all the others. So I mostly use the drawers I can reach ok, either standing or sitting. You'll find that will be a problem in the kitchen too, which is why the Wolpert book suggests leaving your most used pots and pans on the counter. And same with the frig...

We have a tub shower and I used the shower seat we bought until about a month ago. It made bathing so much easier! We attached one of those hand-held sprayers on a flexible hose to the shower head, and the head of that hooked onto the seat. I did need help for awhile, and still have a hard time doing one part (but manage by sitting on the tub edge) to pull the faucet spigot down to engage the shower. I also have a clamp-on handrail thing in the center of the outside edge of the tub, to hang onto when getting in and out.

We kept track of my meds, and I just looked back to see what it was like when I first got home from the hospital. It shows I did take pain medication usually sometime during the night--like between 2 a.m. and 4 a.m. I have always slept really soundly, and I think for the most part I slept sort of ok, but not like usual. It might be good to have one of your girls sleep in your room for a little while--or at least within earshot.

We made my bedside lamp so that it would be touch controlled. By doing that, it also made it so it had 5 varying amounts of light. I slept with it on the lowest, so I didn't become too disoriented in the dark, and after I was able to get up ok on my own (it's actually hard to remember how to logroll at first, especially with the meds) I didn't have to worry about seeing to do anything.

Some of these things that have been so useful were paid for by the insurance back in the hospital-- my raised toilet seat with arms, things to help you get dressed (reacher, sock-aid), cane. Some things we bought on our own, like the shower seat. It probably all depends on what they have you do in the hospital.

I think I've written way too much already. If you have any specific questions, please ask. I think you will manage fine, especially with your girls there to help out for awhile. But I also know it is very slow going. I'm still trying to reach that "recovered" goal! I can look back and see how far I've come, and that is so encouraging. But I also thought I'd be able to tough this out and return to my job after 3 months and be doing all sorts of things by now. I've opted for staying home from work for all of this school year. It's not always a case of mind over matter, although I could have pushed myself to do more if it was absolutely necessary.

Best wishes for a very successful surgery and special bonding time with your girls. This time you'll be on the receiving end of the TLC. You'll do great and be straighter and taller soon! :)

suzyjay
11-12-2007, 12:05 PM
I was 44 yrs old when I had to my surgery and I am fused from T4 - L4 and I am 9 months post op. I didn't have any trouble going up or down stairs, just went slow and held on to the bannister. I didn't need a cane to get around shuffled around slowly. A grabber or two is a must. I sat in an high back office chair with arms that I kept in my livingroom, that was the most comfortable place for me to sit. I didn't sleep through the night I woke up around every 3-4 hours, but it's better to set an alarm clock around the time you have to take your next pain meds so you don't wake up in bad pain and have to wait for the meds to kick in. I didn't need any help using or going to the bathroom. I also purchased a shower chair, a hand held shower head, (you will need help in the shower at least for the first few showers) raiser for the toilet seat and a railing for the side of my bed, so when you log roll out of bed you won't roll off the bed and the railing also helps to hold on to when getting in and out of bed. It's a good idea if someone is in charge of your pain med schedule becasue it is sometime hard to remember when your next dosage is due. You'll need someone to make your meals and help getting dressed. You'll need this help mostly in the first week or two. Best of luck to you.

Sue :)

Geish
11-12-2007, 12:10 PM
Thank you so much for the information. I just ordered the book from Amazon along with The Scoliosis Sourcebook" by Michael Neuwirth. They should be here by Friday.
So 5 days in the hospital sounds like a short stay? That was the information I got from the initial scheduling person, but she could be wrong. I am supposed to hear back from the Doctor's actual scheduler by this Wednesday and should be able to get more information then. The first person didn't believe me when I informed her that insurance would cover a hospital bed and raised toilet seats and in home care. I had already confirmed this with my insurance carrier's member services division. I think she thought I was going in for maybe a herniated disc or something less major than spinal fusion from T4-L4. She didn't think I would need a hospital bed or home care.
Again, thanks for the resources and information. I can't wait to start reading!

Singer
11-12-2007, 12:15 PM
Geish, I think Susie gave you excellent advice. I was very restless when I first got home, so my husband slept in the guest room (within earshot) and I was fine by myself at night....I woke up on my own at night when I needed meds and took them myself. I kept a notebook by my bed and wrote down the times I took them so I wouldn't accidentally take too many. It's very easy to get confused about that. I think I stopped taking middle-of-the-night meds at around 2 months.

Your biggest needs in early recovery are food (you can't buy it or cook it yourself) and supervision in the shower and on the stairs (you should keep stair-climbing to a minimum). If you have the option of insurance paying for rehab, you should definitely go -- my husband could never have handled me fresh out of the hospital. By the time I left rehab, I could dress myself, wipe my butt, and do simple things like fix myself a snack.

Good luck to you!

abhbarry
11-12-2007, 12:20 PM
Everyone has already given great advice, and yes, 5 days sounds way too short. I was told 7, but ended up staying in the hospital for 10 (and I'm 28 years old).

I did need help in the night taking medicines and also having help turning over and adjusting my pillows for support. Because my husband is hard of hearing, my mother (who was helping) stayed in another room with a baby monitor turned on. If your daughter is in another room, you might want to consider getting a baby monitor.

Get some bendy straws to drink with. This is especially helpful during the night so you don't have to make all that effort to get up to take your meds.

Best of luck. Stay strong and positive and you'll do great.

Anya

Susie*Bee
11-12-2007, 12:39 PM
Those are the two books I read and re-read in the 6 months prior to my surgery. Some of it didn't apply, especially with the Neuwirth book (most of the patients he talks about are pretty young) but a lot does, and it really helps to soak in all that info-- at least I felt more at ease by reading them. One thing that I found out later to disregard was how he says you should be off pain meds pretty soon. I kept feeling guilty because I still needed them. At 6 months post-op, I am off all except one darvocet at night.

You're 10 years younger than I am, so you will probably bounce back a little quicker and maybe not need to be in the hospital as long. I think they usually start with 5 days and then extend it as needed. That's good your insurance will cover your needs at home.

Speaking of insurance-- this is sort of funny-- after the fact. I think it was because the rehab we were going to do was canceled, and somehow a BIG mistake was made by both the hospital and Blue Cross, but we got a statement after I'd been home for awhile that my hospital bill was not covered by insurance because it had not been approved. YIKES! :eek: Of course, it had been approved, but somehow canceled--which is where I think the rehab part was involved. Anyway, there was this denial of coverage for over $185,000 to the hospital. I panicked but my husband didn't. It turned out fine once it got straightened up. Geesh! :rolleyes:

suzyjay
11-12-2007, 01:17 PM
I spent 6 days in the hospital, sent home in the morning on the 7th day. I was fused from T4 to L4.

Sue

sccrm08
11-12-2007, 04:09 PM
Geish,

I was told 7-10 days in the hospital. I stayed 10 days.

I had my husband take time off while I was in the hospital and stay with me as I did not want to be alone, and he was very glad he stayed, I was in bad shape. when I went home, he had to go back to work and works 60+ hours a week all times of the day and night. My 3 daughters ages 21, 19 & 14 made sure One of them were with me at all times. With all the meds I was on, I had no idea what was going on around me so I put my trust in my daughters hands and they did an awsome job. They fed me, kept track of the meds, helped me to the shower & bathroom, slept in the same room as me did the laundry, cleaned I could not have done this without them. They also wrote everthing that went into my mouth down so all they had to do was check the paper if i had my meds, eaten or had enough water. I also had a lot of extended family bringing dinners over for 3 months.

I'm sure your daughters can handle all the help you'll need but let friends and extended family know meals would be appreciated.

JoAnn5
11-12-2007, 08:48 PM
Get some smooth, satiny or silky, sleepwear. I thought the warm flannels would be so nice, but they made it wayyyyy too hard to turn over in the bed. The other girls have given you great advice.... Good luck to you... God bless!

JoAnn

Geish
11-17-2007, 10:03 AM
Thank you all for the great advice. I got my copy of David K. Wolpert's book Scoliosis Surgery: the Definitive Patient's Reference and finished it last night. I was just fine until I read the section on the ICU and for some reason that freaked me out a bit. Even though I knew what to expect for the most part, actually seeing it in print scared me a bit. I'm okay now and I think I should be able to keep the fear under control.
On the other hand, it was comforting to read that I should expect improvement by three weeks, not marathon running type improvement, but at least able to get around my house improvement. I have coached wrestling at out local high school for 7 years and its nice to know I may make it back in time to see some matches towards the end of the season, even if I can only stay a short while. I have seen some of these boys every season for the last 4 years and the thought of not watching the Seniors compete has been heartbreaking.
I also reconfirmed with the hospital and yes, my Dr is only recommending a 4-5 day stay for now. Maybe he thinks I will recovery quickly, or at least quickly enough to get out of the hospital after 5 days! So I will be home for Christmas but I am sure I won't feel like celebrating too much! I will be doing all of my Pre Op work on the 28th and then it is just 2 more weeks to the big day!

dajanerz
11-17-2007, 10:49 AM
hi Geish,
I was also told i would be in the hospital for 4-5 days...i got out in 6.

i'm about 4 weeks post op and in my experience, the only assistance i needed after i got to my parents house was with meals, showers, and dressing change.

i insisted on doing everything myself before i asked for help. you will be surprised at how much you can actually do yourself.

In the hospital - PT will make sure you can walk on your own (with a walker) and show you simple exercises to get your legs back into shape. Since you won't be able to "BLT" (bend, lift, or twist) at the waist - you will be bending your knees up to you to put your pants and socks on by lifting one leg up and over your other knee. They provided the walker and grabber to me to take home. That's all you really need. Oh and smooth comfortable clothing - you don't want ribbed or wrinkles on your clothes or bedding - the imprints left after laying down make you itch for days!

As for showers - you will need a shower seat. And someone on standby to hand you your soap, shampoo, razor, towels, etc... unless you can already reach for those items easily. You will also need help with the dressing change. It wasn't too bad for me...just remember to breathe. It will feel very strange the first couple times - especially without your brace on. Will you be wearing a brace?

One more thing - ask your PT to give you advice on how to get in and out of a car. My husband and I stood outside the hospital parking lot for what seemed like 10 minutes trying to figure out how I could get in our van - it was quite stressful.

I also have Wolpert's book - it's a great reference.

I worked until my surgery date too...and i'm married with 2 little boys. Mentally and emotionally, i felt just like you. But, in the end, i was glad that i was "busy" until my surgery date. I came to this forum everyday and searched for every question i had possible and felt really prepared. What you're feeling is very normal. Don't let it get to you though and remember why you chose surgery.

Stay positive and keep us posted. Hope this helped.

Jane

Geish
11-25-2007, 02:20 PM
Okay, now I have another question...will I be able to wear a bra after surgery? It could be pretty scary for anyone looking my way if I can't! Trust me it isn't a pretty sight, even under clothes! :eek:

sccrm08
11-25-2007, 02:27 PM
I wore a very flimsy sports bra at first and now just wear regular sports bras for 2 reasons I don't want anythind too tight and I have not been able to go bra shopping and find any that fits well since I lost so much weight.

geo
11-25-2007, 10:50 PM
I wasn't able to wear a sports bra immediately after surgery - couldn't lift my arms through, and the thought of pulling one down to the right place made me cringe. I didn't wear one when I was in my home, but when I did, I had one that was a size up from usual (a 38 instead of a 36, for example) because my usual size was too tight, probably from swelling.

ALSO - like advised on this forum, I got one that clasped in the front, and that is still all I wear four months later! The thought of a hook/clasp rubbing against my incision is still too much for me at this point.