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Thread: What to expect while at hospital for surgery

  1. #1
    Join Date
    Jan 2010
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    100

    What to expect while at hospital for surgery

    My 14 yo daughter will be having surgery on 8/23 at SLC Shriners. The notes from her initial consult back in March state that she will be having posterior spinal fusion from T3-4 to L 3-4. Of course these numbers could change once a new x-ray is taken but we won't know until we actually arrive at the hospital. She has no other health conditions other than the scoliosis.

    My husband does not deal with hospital situations very well. After visiting our nephew (an adult) in the hospital who had been in an accident, my hubby actually passed out, hitting his head hard enough to require stitches.

    I want to prepare him for what we're likely to see and experience during our daughter's hospital stay (10 days) so we don't have a repeat of his passing out.

    My questions are:

    1. What can we expect after our daughter is in recovery? I've read a couple of posts where people have said their child was still on a breathing tube for the day after the surgery. Is this the norm?

    2. I've also read that the child is pretty much asleep for the first two days (surgery & day after). Is this the norm?

    3. How bad is the pain? What are the normal meds given for pain management?

    4. Incision: What care is given to the incision site? When do they remove the stitches or are they the type that dissolve?

    I know there's much that I'm missing.

    If anyone would care to share their child's hospital story I'd really appreciate it.

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
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    7,213
    Quote Originally Posted by Gryffindor View Post
    My 14 yo daughter will be having surgery on 8/23 at SLC Shriners. The notes from her initial consult back in March state that she will be having posterior spinal fusion from T3-4 to L 3-4. Of course these numbers could change once a new x-ray is taken but we won't know until we actually arrive at the hospital. She has no other health conditions other than the scoliosis.

    My husband does not deal with hospital situations very well. After visiting our nephew (an adult) in the hospital who had been in an accident, my hubby actually passed out, hitting his head hard enough to require stitches.

    I want to prepare him for what we're likely to see and experience during our daughter's hospital stay (10 days) so we don't have a repeat of his passing out.

    My questions are:

    1. What can we expect after our daughter is in recovery? I've read a couple of posts where people have said their child was still on a breathing tube for the day after the surgery. Is this the norm?

    2. I've also read that the child is pretty much asleep for the first two days (surgery & day after). Is this the norm?

    3. How bad is the pain? What are the normal meds given for pain management?

    4. Incision: What care is given to the incision site? When do they remove the stitches or are they the type that dissolve?

    I know there's much that I'm missing.

    If anyone would care to share their child's hospital story I'd really appreciate it.
    I've seen HUGE differences between what happens at faciilities. Your best bet is talking to the parents of someone who had surgery at your Shriners. The Shriners folks will probably happy to supply you with a few references.

    --Linda

  3. #3
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Hi
    My daughter was fused from T4-L4 at age 15, so maybe your dd's surgery and recovery will be similar.

    Quote Originally Posted by Gryffindor View Post

    My questions are:

    1. What can we expect after our daughter is in recovery? I've read a couple of posts where people have said their child was still on a breathing tube for the day after the surgery. Is this the norm?

    Sheena was in recovery for about one hour, total time in surgery was 8-9 hours. She was awake when we went to see her but heavily sedated. She was able to talk to us. She did not have a breathing tube in recovery. She went directly to ICU and stayed overnight, I was able to stay with her.

    2. I've also read that the child is pretty much asleep for the first two days (surgery & day after). Is this the norm?

    Day of surgery and next day, yes.

    3. How bad is the pain? What are the normal meds given for pain management?

    Pain was pretty bad, it's a very long incision and they do a lot of manipulation and cut away all the muscles, it's to be expected. There's also a lot of discomfort from bloating. She was on drip morphine and given a bolus as needed for 5 days then changed over to oral narcotics and valium the last few days (she was in the hospital 8 days). She was on morphine too long, most kids are switched over after about 3 days I think. Her appetite improved immediately upon discontinuation of morphine.

    4. Incision: What care is given to the incision site? When do they remove the stitches or are they the type that dissolve?

    There was a gauze bandage over the entire incision the first few days along with drain tubes that are placed during surgery. These are removed about 3 days after surgery. There are dissoluble stitches and tape covering the entire length of the incision. The tape will not be removed until 2-3 weeks after you go home, her surgeon will tell you when the tape can be taken off or it may fall off on it's own while she showers. Sheena's was on so tight, we had to take it off a few pieces at a time. The incision was completely closed by then.

    If anyone would care to share their child's hospital story I'd really appreciate it.
    You can see the results of my dd's surgery in my sig.
    Take care, everything will be ok.

  4. #4
    Join Date
    Jan 2007
    Location
    Ontario, Canada
    Posts
    140
    One thing I'd like to point out that you don't hear very often but your husband might like a heads up before hand, is that she will be very swollen, especially her face. My sons eyes were so swollen that it was an effort for him to keep them open. This gradually diminished over the first few days.

    Ramona
    mom of Patrick, age 15 at time of surgery
    diagnosed July 2006 curves T58 L 38

    Nov. 2006 curves T72 L38
    also lordoscoliosis

    feb.2007 curves T79 L43

    Surgery May 16 2007
    fused T4 to L1

  5. #5
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,317
    I agree with Linda. There is a huge range of experiences and surgeon protocols seen just in the testimonials on this group. My impression is that the range of surgeon protocols is greater than the range of patient recoveries. If true, then you need to get some written material about what to expect from your surgeon at that hospital. Our surgeon gave us a few-page write up about what would happen and what to expect in recovery.

    Quote Originally Posted by Gryffindor View Post
    My questions are:

    1. What can we expect after our daughter is in recovery? I've read a couple of posts where people have said their child was still on a breathing tube for the day after the surgery. Is this the norm?
    I don't think chest tubes are used in posterior fusions. I think they might be used in VBS though which might be where you read that for kids. Adults having anterior surgey get chest tubes as I understand it though.

    2. I've also read that the child is pretty much asleep for the first two days (surgery & day after). Is this the norm?
    They sleep a lot but my kids were woken up every 2 hours for the first 2 days to move them in the bed side/back/other side/back/etc.. They are awake more the second day.

    3. How bad is the pain? What are the normal meds given for pain management?
    My kids were on a PCA where they can top off a basal morphine drip with some more morphine up to a point. On day 3 they lost the PCA and went onto oral pain meds as I recall. The pain is bad if not managed. Also, the pain will spike on the PT days. This was Day 2 getting out of bed and onto the tilt table. The goal is to get the pain below a 3-4 out of 10 at all times. We did not manage that unfortunately.

    4. Incision: What care is given to the incision site? When do they remove the stitches or are they the type that dissolve?
    The only thing they did with the incision is replace the bandage on Day 4. There were no stitches that needed to be removed.

    I know there's much that I'm missing.
    Try to get some written protocols as to what to expect. The ones we got were extremely accurate and included the post op clinic visit schedule and what activities could resume when and when they might be ready to return to school and such.

    If anyone would care to share their child's hospital story I'd really appreciate it.
    There are plenty of testimonials in the kid's surgical section. But as Linda says, these will not necessarily apply to your surgeon and your hospital. I can say there was a huge variance between what other surgeon's do and what ours did.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  6. #6
    Join Date
    May 2010
    Posts
    47
    Hello:

    My daughter's surgery was originally scheduled for about the same time as your daughter's; however, her surgeon had a cancellation and we were moved to a June 21 slot. Here are my thoughts/answers to your questions:

    1. What can we expect after our daughter is in recovery? I've read a couple of posts where people have said their child was still on a breathing tube for the day after the surgery. Is this the norm?

    Our daughter's surgery was over by about 2:30 p.m. and she was in surgery recovery for about 90 minutes and we didn't get to see her until they wheeled her out and down the hall to PICU. In PICU, she was on all kinds of monitors, but did not have a breathing tube.

    The following day she was moved to a regular room.

    2. I've also read that the child is pretty much asleep for the first two days (surgery & day after). Is this the norm?

    Jenna was awake sometimes, but asleep most of the time, during her night and part of the next day in PICU. I was surprised at the wakefulness. She wanted to brush her teeth and wash her face (in bed, of course), so we did do that. We took those clearasil face wipes to the hospital and used them throughout her stay, followed by a little lotion. These little things seemed to make her feel lots better.

    3. How bad is the pain? What are the normal meds given for pain management?
    She had the morphine drip/pump set up for her immediately after surgery. At her pre-ops, a pain management nurse had explained the drip to her, so she was prepared prior. Once the kids can start eating is usually when they take oral pain meds (they need to have food in their stomachs to tolerate the oral meds, is the reason we were given). Jenna didn't eat until two days after surgery, so then was put on oxycontin, oxycodone and valium (as needed for spasms).

    Yes, the pain is bad. I felt like our hospital gave her a lot of good preparation on this, and that helped her be prepared for it. Also, she is participating in a study at the hospital on how adolescents with posterior spinal fusion cope with the pain and she is part of the group that received some extra counseling before surgery (in deep breathing and guided imagery, etc.) and also some nice perks, like massages (of her feet and legs) in the hospital. I really believe that information was power in this case and she coped amazingly well with the pain, and is still doing well.

    4. Incision: What care is given to the incision site? When do they remove the stitches or are they the type that dissolve?

    Jenna had a dressing over her incision until her ten-day post-op appointment. She had internal (dissolving) stitches and also the incision was sealed with that surgical superglue stuff. Now, about 17 days post-op, her incision is scabbed-over and in a few days she can bathe and go to a pool. When the dressing came off, she was able to shower. Up until that point, it was sponge baths.

    Along those lines, I highly recommend having a haircare plan before you go to the hospital. We ran into an issue with Jenna's long hair. Even though it was in a ponytail, it became pretty tangled. The nurses washed it in bed once and then wheeled her to a beautician's sink to wash it another time. It was SO tangled, we needed de-tangler! And I felt so awful trying to brush out the tangles, which really bothered her. Bring her own shampoo, a good conditioner and some spray de-tangler with you to the hospital, is my advice.

    We've also struggled with appetite/eating issues. Smoothies are our very good friends right now! In the hospital it was really hard figuring out something that sounded good. Finally, we figured out pancakes! Yay!

    She was completely grossed out by the drain that came out of her incision into a bag in her bed. One kind nurse thought to cover it with a sock and that was great, she didn't have to see it.

    On the puffiness issue - I have read about this from many parents. Our hospital has a special table with lots of gel cushion and I think this really helped our daughter. She had very little puffiness! And even though she is very thin, she didn't have other bruising, such as on her hip bones, from lying prone for the long surgery.
    Jill, mom to 14-year-old daughter who had spinal fusion surgery (T3 to L1) June 21, 2010. (Pre-op curves 52T and 30L.)

  7. #7
    Join Date
    Jan 2010
    Posts
    100
    Fingers Crossed: Thank you for sharing your experience with us.

    I've been preparing our daughter by providing her with as much information as I can lay my hands on and she's really looking forward to having this surgery as she's very tired of being in pain and knows this is the only thing that's going to eventually help. She also wouldn't mind gaining back some of the height she keeps loosing.

    On the other side of things, every time I try to bring up the issue of our daughter's surgery and what to expect with my husband he shuts down and says he doesn't want to talk about it.

    Ugh.

  8. #8
    Join Date
    May 2010
    Posts
    47
    I am sorry that your daughter is in so much pain. Our daughter was just starting to complain of pain sometimes, it seemed to come on with running (as in on the soccer field or when just training).

    She is still "ouchy" from the surgery, of course, and is wondering how she is ever going to sit at her desk all day once school starts, but I was just telling her we need to take this one day at a time and we will figure out something.

    Your family will ALL be much better once you, too, are on the other side on this!
    Jill, mom to 14-year-old daughter who had spinal fusion surgery (T3 to L1) June 21, 2010. (Pre-op curves 52T and 30L.)

  9. #9
    Join Date
    Jan 2010
    Posts
    1

    Thanks for your realistic post

    We just scheduled our 12 year old daughters spinal fusion for Dec.7 for her 57degree thoracic curve. The thought of surgery is really scary, but we are glad that we have time to prepare. I am sure after the shock of her actully needing surgery, I will have a ton of questions.

    Marsii
    (mother to Shea)

  10. #10
    Join Date
    Jan 2010
    Posts
    100
    Shei: I know what you mean about the shock factor.

    When my daughter had her consultation with her current surgeon we found out that her curves had progressed from 21 T 36 L to 36 T 48 L in just 3 months!

    The other doctors in the room where we were reviewing her x-rays even turned to look at them due to the rapid progression.

    All I could keep saying was, "It changed that fast?". Then it was a flurry of different people giving us information after our surgeon said she would definitely need surgery. I don't even remember what some of them said as I felt as if I had gone completely numb the second I heard the new numbers.

    Once I had time to calm down from the shock of it all is when I started contacting everyone who had tried to give us info on that date because I couldn't remember exactly what they had said.

    At least we're getting closer to the surgery date and our daughter is looking forward to it.

    NEW QUESTION: Can anyone whose child has had surgery tell me if their child gained back any of the height they had lost? My daughter is curious to whether she will get any taller. We're holding off on buying new school clothes until well after the surgery to make sure what we buy both fits and is comfortable.

  11. #11
    Join Date
    May 2010
    Posts
    47
    My daughter gained a little over an inch in height. She was already tall, so was glad not to gain more than that. (She is now a little over 5'9")

    I've been wondering about this, though, too. Her t curve was in the low 50s and she was developing a significant rib hump. The hump is now all but gone and her back looks great. Still, though, "only" gaining an inch . . . just seems that common sense would dictate that straightening that large of a curve would create a greater height gain?

    Anyone else have thoughts/insight on this?
    Jill, mom to 14-year-old daughter who had spinal fusion surgery (T3 to L1) June 21, 2010. (Pre-op curves 52T and 30L.)

  12. #12
    Join Date
    Jan 2010
    Posts
    100
    Fingers Crossed: What were her curves before and what are they now after surgery?

    Our daughter is just a bit over 5'1". She used to be over 5'2".

  13. #13
    Join Date
    May 2010
    Posts
    47
    Just edited my signature to include her curve number pre-op. (52T and 30L)

    Her lumbar was compensatory, and it straightened out nicely during surgery. At her 10-day post-op appointment, her surgeon said he believes she will not have problems with her lumbar curving in the future and of course we were very happy to hear that!
    Jill, mom to 14-year-old daughter who had spinal fusion surgery (T3 to L1) June 21, 2010. (Pre-op curves 52T and 30L.)

  14. #14
    Join Date
    Jan 2010
    Posts
    100
    Well, when it rains it pours. Our main water line which feeds water to our house has a leak. Called a plumber for an estimate to fix the mess this morning. $1k. That's pretty much all of the money we had saved up to go to SLC.

    I don't know how we're going to make it there now. We already have our plane tickets but now we don't have any money for food or a hotel (we were hoping to get into the RMD House but can't get a confirmation until we arrive in SLC).
    Mother to 14 yo Cheyenne. Surgery 8/23/10 Shriners, SLC.

  15. #15
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,158
    Hi there,

    I am so sorry to hear about your daughter's surgery and your recent added stress. I would reach out to either your local Shrine Temple or the SLC Shrine (look online) and inquire about help. You do not have to be a Shriner to ask for help. I have heard of them transporting families. I would also try calling the Family Services folks on SLC and see if they can help with any of the costs.

    Good luck,

    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

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