Page 1 of 5 123 ... LastLast
Results 1 to 15 of 69

Thread: Packet of info for surgery

  1. #1
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901

    Packet of info for surgery

    I just received the surgery info packet. We will see the surgeon on Monday for the pre-surgery prep.

    Here are some points from the material:

    1. Each child is in a private room with a sofa bed for a parent. That's great because I planned on being with S the whole time if she wants. It is "infrequent" that the child will be in ICU that night. So I will likely be with her that first night also.

    2. The usual stay is 5-7 days. The surgeon told us about 5 days. The insurance okayed 5 days.

    3. She will go home with some pain meds but can probably manage on OTC meds after they run out.

    4. No PT needed at home.

    5. Usually the child is able to go back to school 3 weeks after the surgery(!). An absence of 4 weeks is the usual criterion for obtaining homebound school instruction and most patients are back at school by that time. This is in keeping with what the surgeon told us... 3 weeks... but I didn't realize he was counting from the surgery date and not the date when she comes home!

    6. One surgeon has NO restrictions on the weight of bad packs if they are carried close to the body (front or back) and both shoulder straps are used. Our surgeon limits it to 10 pounds using both straps.

    7. PE to resume one year after surgery. This differs from what the surgeon told us (8 months). And I see in the discharge instructions it says 8 months.

    8. Typically, a child will have enough energy to go back to school 3-4 weeks after surgery. In another month,they will feel back to normal. Gradually increasing walking is helpful. Walking one mile by the time of the first post-op visit (3-4 weeks after surgery) is a good goal.

    So there you go. With one week being vacation, I may not need to get a tutor for S. Her sister W is in most of her classes (except elective) and can bring the work home.

  2. #2
    Join Date
    Apr 2007
    Location
    Sydney - Australia
    Posts
    166
    That's great Sharon that they gave you a list - we received zip, zilch, nothing!!!! Please remember the Scoliosis Motto - Everyone is different!

    Plan for the what if's so your prepared... such as - what if she does to ICU - where will you stay? (the hospital gave me a bed for the night in the paediatric ward).

    School work - Elysia can't sit for hours on end hunched over school books - so we've stuck with the core subjects that make a big impact if missed out - like Maths!!!! We didn't sweat if we missed out other subjects.

    Advice - Take your own pillow from home! The fold out beds for parents can be torture, at least make it tolerable by having your own pillow. I had pillows - 2 blankets, a lovely soft snuggle rug for Elysia and a wollen one for me - (I hate hospital blankets) and it made her room so much more personal to have some of our things.

    Also she may not feel like full days back at school. Elysia looks fighting fit and well and overdoes things ALLLLLL the time and pays the price later. We went out to dinner last night with friends and Elysia had a great time but was so exhausted she was up to 4.30am with back and rib pain. So allow for easing back into school - play it by ear!

    Good luck with everything, hope it all goes well!!!

    Del
    xx
    Elysia 16 in Feb 2010
    Sydney - Australia
    Feb 2008 Fused T5-L1 and 5 ribs removed.
    Dec 2009 - Crankshafting
    Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
    L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

  3. #3
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Just a few comments ...

    Quote Originally Posted by Pooka1
    2. The usual stay is 5-7 days. The surgeon told us about 5 days. The insurance okayed 5 days.
    I had to laugh when my insurance initially okayed THREE days (what?!?!). It's standard practice, so don't worry if she happens to need more time - they re-evaluate during the stay with nothing required from you. Mine ended up approving the entire 6 days.

    One thing I wanted to note, hospital tend to rush you out when they get ready: If it's 11:00 a.m., and you're not ready to go, remember you've already paid for that day . Technically, you've got until 11:59 p.m. to stroll out - LOL. (yes, most patients - and aprents who've been sleeping on a fold out chair in the room! - are ready to bust out as soon as they can ... just wanted to point out they charge your insurance for the full day whether you leave at 6:00 a.m. or 11:00 p.m).

    A tip for you, those fold out chairs are normally quite reminiscent of your Aunt Bertha's sleeper sofa from 1962 (springs, bars, etc.). My mom insisted on staying with me the first night and we seriously had a giggling fit at the HUGE squeaking springs. It wasn't very funny when we discovered the springs stuck out (she was SO miserable, but wouldn't admit it).

    You might want to pick up a two 1" full or queen size memory foam toppers (to double on wherever you're sleeping, and to double on her bed). They'll come in handy once you get home for bed, couch, wherever she wants to hang out.

    And for your own comfort, a pillow from home never hurts!

    Quote Originally Posted by Pooka1
    3. She will go home with some pain meds but can probably manage on OTC meds after they run out.
    That would be fantastic if she only needs OTC, but be sure to talk to your doctor (remember it's just a general guideline) and get a prescription for something stronger before you leave the hospital juuuuuust incase OTC doesn't cut it. There no shame in pain meds if you need 'em ... that's why they exist! . Having script in hand before you head home ensures if she needs them after hours or on a weekend (I hope not), you aren't stuck trying to reach a doctor on call unfamilar with her case.

    I've done that, and it's the pits.

    Quote Originally Posted by Pooka1
    4. No PT needed at home.
    That's another one of those things that varies by doctor. I know several on here who had my *exact* surgery (some from even back in the December bunch), and they're just now doing PT. Hanson told me no PT in my future at ALL.

    Quote Originally Posted by Pooka1
    5. Usually the child is able to go back to school 3 weeks after the surgery(!). An absence of 4 weeks is the usual criterion for obtaining homebound school instruction and most patients are back at school by that time. This is in keeping with what the surgeon told us... 3 weeks... but I didn't realize he was counting from the surgery date and not the date when she comes home!
    This is really, REALLY pushing it for most kids. I'm sure the moms will chime in, but full days at 3 weeks normally are out of the question, and a good portion of kids aren't even ready for part days by then.

    Whenever she returns, don't forget that pillow. Hard back chairs and hardware don't mix well (to say the least).

    Quote Originally Posted by Pooka1
    6. One surgeon has NO restrictions on the weight of bad packs if they are carried close to the body (front or back) and both shoulder straps are used. Our surgeon limits it to 10 pounds using both straps.
    10 lbs. at 3 weeks (assuming she's back by then) would scare me if it were my child, and honestly, Sharon, I would be surprised if she'll find humping 10 lbs. bearable that soon.

    Have you considered a rolling backpack for that initial return period?

    Quote Originally Posted by Pooka1
    8. Typically, a child will have enough energy to go back to school 3-4 weeks after surgery. In another month,they will feel back to normal. Gradually increasing walking is helpful. Walking one mile by the time of the first post-op visit (3-4 weeks after surgery) is a good goal.
    Walking is definitely the best rehab, but I still think 3-4 weeks from the day of surgery is optimistic (for full days of school). Kids and adults both get worn out easily the first 5-6 weeks. My recovery has been far more like that of an adolescent, and today marks 6 weeks for me: I can finally clean the house, do laundry, cook, mop, clean the car, do the grocery store, etc. without running out of gas, but only has that really changed in the last week .

    Like I said, walking definitely builds endurance - and as you said starting gradually is he way to go. Every little bit helps - and some days in the beginning (when I was in fear of walking too far away from the house, getting stranded, and having the embarrassing pleasure of having to call a friend - LOL!), I'd just do a short walk a few times a day.

    I think the most important thing to remember is every (kids and adults alike) are different. Different pain tolerances, different healing rates, and different times to regain normal energy and activity levels from such an extensive operation.

    I haven't seen you say ... did she do an autologous donation?

    Anyway, best wishes to you and your daughter. I'll be thinking of y'all on the 26th, and look forward to good news. May the surgery be succesful - and uneventful - and her recovery be a breeze!

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  4. #4
    Join Date
    Nov 2007
    Posts
    90
    Hi Sharon-
    You must be glad to have gotten the packet of info - it is always helpful to have everything written out in front of you, knowing what to expect rather than wondering is always better.
    I forget, who is the surgeon?
    Also, any news regarding your other daughter?
    Good luck,
    Cara
    Cara, Mom to Nathan
    Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
    Boston Back Brace 8/07 12/07
    VBS 12/10/07 Boston Children's Hospital
    Dr. Hresko
    40 Degrees before VBS
    11 Degrees now!! (2012)

    Nathan's VBS Video

    www.vertebralstapling.com

  5. #5
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Quote Originally Posted by Aussiemum
    That's great Sharon that they gave you a list - we received zip, zilch, nothing!!!! Please remember the Scoliosis Motto - Everyone is different!

    Yes that's right. When they say "infrequently," "usually," etc. I assume they are referring to the situation for all their patients they have done. So it's their best guess based on all their other patients in their dataset.

    Plan for the what if's so your prepared... such as - what if she does to ICU - where will you stay? (the hospital gave me a bed for the night in the paediatric ward).

    School work - Elysia can't sit for hours on end hunched over school books - so we've stuck with the core subjects that make a big impact if missed out - like Maths!!!! We didn't sweat if we missed out other subjects.

    Well I want her to do all the work she misses so she won't be at a disadvantage either at the end of the year or for next year. She definitely can't miss any math. School is the most important thing.

    Advice - Take your own pillow from home! The fold out beds for parents can be torture, at least make it tolerable by having your own pillow. I had pillows - 2 blankets, a lovely soft snuggle rug for Elysia and a wollen one for me - (I hate hospital blankets) and it made her room so much more personal to have some of our things.

    I will do that but it sounded okay... "small sofa bed."

    Also she may not feel like full days back at school. Elysia looks fighting fit and well and overdoes things ALLLLLL the time and pays the price later. We went out to dinner last night with friends and Elysia had a great time but was so exhausted she was up to 4.30am with back and rib pain. So allow for easing back into school - play it by ear!

    Wow. Well I'm going to get her a very portable pad she can carry between classes so she can be comfortable sitting. I may meet her at lunch and let her rest in our van if necessary. I'll make sure her sister or someone (maybe me) carry her bag if that helps her return to full days quicker. It kills me that she will miss any school.

    Good luck with everything, hope it all goes well!!!

    Thanks so much, Del. I appreciate your kind thoughts.

    sharon
    text text text text
    Last edited by Pooka1; 03-19-2008 at 12:38 PM.

  6. #6
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Quote Originally Posted by nate03
    Hi Sharon-
    You must be glad to have gotten the packet of info - it is always helpful to have everything written out in front of you, knowing what to expect rather than wondering is always better.
    I forget, who is the surgeon?

    I'll pm you.

    Also, any news regarding your other daughter?

    She is getting the night-time bending brace. It should have bene in last week but still isn't here. I have to call them.

    Good luck,

    Thanks so much, Cara.

    sharon
    text text text text
    Last edited by Pooka1; 03-19-2008 at 12:38 PM.

  7. #7
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Quote Originally Posted by Pooka1
    Well I want her to do all the work she misses so she won't be at a disadvantage either at the end of the year or for next year. She definitely can't miss any math. School is the most important thing.
    Then perhaps you should reevaluate the timing of her surgery or explore other alternatives for her school work vs. planning her return so quickly. I'd think her health/comfort would be the most important thing. I also suspect math is the last thing she'll be up to in the first few weeks after surgery.

    Quote Originally Posted by Pooka1
    I may meet her at lunch and let her rest in our van if necessary. I'll make sure her sister or someone (maybe me) carry her bag if that helps her return to full days quicker. It kills me that she will miss any school.
    Sharon, I'm fairly certain my time spent trying to be helpful is an an exercise in futility (especially since my previous post was completely ignored). I'm going to knowingly waste my time ONE more time to say I really don't think you understand the magnitude of what lies ahead.

    Have you noticed no parents have contributed anything resembling agreement this timetable you've set is realistic? Del's the only one who's even come close to that, and Elysia is not the recovery norm (you know what I mean, Del - and certainly you know no offense).

    I understand you think I'm clueless, and that's fine. You're not the first person, you won't be the last. At least I know I've tried to give you facts and help out.

    As I've pointed out before, my recovery has been more along the lines of an adolescent than adult (both the parents and adult patients here can vouch for that). You've questioned every single thing I've tried to explain (actually almost everything *anyone's* answered since you joined this board. I've always been puzzled by people who ask questions, simply to argue/debate the answers. If a person knows the answers, why ask the questions?

    Of course your daughter will heal, but return to school (even part time) at 3 weeks is unlikely, and a "rest in the van at lunch"?? A 1-2 hour nap is more like it.

    You (understandably) can't fathom the way this surgery zaps you at first. There are *always* exceptions (I *am* one, in fact), and I hope your daughter's one. I *also* hope you haven't led her to believe a walk in the park awaits. You're both setting yourself up to be disillusioned with reality.

    Out of curiousity, that post-op list you received ...

    How many similar fusions a year are performed by that hospital, and how many by her surgeon?

    Most of those instructions flag the sign of either that says "not many".

    Quote Originally Posted by Pooka1
    text text text text
    *sigh.
    Last edited by txmarinemom; 03-19-2008 at 03:32 PM.
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  8. #8
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Sharon,

    You stated:

    "Well I want her to do all the work she misses so she won't be at a disadvantage either at the end of the year or for next year. She definitely can't miss any math. School is the most important thing.

    Well I'm going to get her a very portable pad she can carry between classes so she can be comfortable sitting. I may meet her at lunch and let her rest in our van if necessary. I'll make sure her sister or someone (maybe me) carry her bag if that helps her return to full days quicker. It kills me that she will miss any school."

    (sorry, but I couldn't do the "quote" thing the way you posted):

    While I can understand anyone's concern when a child may miss weeks of school - and while I KNOW you want only the best for your daughter, it sounds to me like if she's going to need to rest at lunchtime, then maybe she wouldn't be ready to return at that point.

    I'm not saying that school isn't important, but I know so many kids who have had fusion, missed weeks of school (it varies - could be 4, 6, 8 weeks) and they all caught up. What about getting a tutor at home? Most schools provide this.

    One parent told me that even at 5-6 weeks post op, their child tired out just from having the tutor over for a few hours.

    Of course, if your daughter's recovery moves a long quickly, then yes, why not let her return to school if SHE feels she can do it. But, please realize that missing even 4-6 weeks of school will not make a difference in the long run. These kids catch up quickly and when she's in college and you look back you'll see that in the grand scheme of things, missing an extra week or two didn't do any damage!

    I also think Pam made a very good point - if you are very concerned about missed school work, is it feasible to do the surgery over summer break? This way you'll be less stressed over school and your daughter doesn't have to rush back before she's 100% recovered.

    I hope you don't mind my candor - I think it's best to throw information and ideas out there in an effort to help others - I guess my feeling is that folks can take what they like and leave the rest.

    Best of luck to your daughter. I wish her a very speedy recovery.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  9. #9
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Quote Originally Posted by mariaf
    While I can understand anyone's concern when a child may miss weeks of school - and while I KNOW you want only the best for your daughter, it sounds to me like if she's going to need to rest at lunchtime, then maybe she wouldn't be ready to return at that point.

    I'm not saying that school isn't important, but I know so many kids who have had fusion, missed weeks of school (it varies - could be 4, 6, 8 weeks) and they all caught up. What about getting a tutor at home? Most schools provide this.
    I'll type it exactly as it appears in the material...

    Shall I arrange homebound school instruction for my child?

    Usually your child is able to go back to school 3 weeks after the surgery. Occasionally, a parent may want to make homebound school instruction arrangements if the school is willing and or requires it. An absence of 4 weeks is the usual criterion for obtaining homebound school instruction and most patients are back at school by that time.


    Quote Originally Posted by mariaf
    I also think Pam made a very good point - if you are very concerned about missed school work, is it feasible to do the surgery over summer break? This way you'll be less stressed over school and your daughter doesn't have to rush back before she's 100% recovered.
    I asked if we could wait until summer break and the surgeon said no.

    Quote Originally Posted by mariaf
    I hope you don't mind my candor - I think it's best to throw information and ideas out there in an effort to help others - I guess my feeling is that folks can take what they like and leave the rest.

    Best of luck to your daughter. I wish her a very speedy recovery.
    Thank you. I appreciate your candor and am grateful for advice on this.

    Best regards,
    sharon

  10. #10
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    [QUOTE=txmarinemom]

    Have you noticed no parents have contributed anything resembling agreement this timetable you've set is realistic? Del's the only one who's even come close to that, and Elysia is not the recovery norm (you know what I mean, Del - and certainly you know no offense).



    Although my daughter was the exception to the rule, she was given permission to return to school after her 1st post-op visit. Had it not been Christmas break, she would have returned at about 3 1/2 weeks post-op, half days. By 4-4 1/2 weeks post-op, she was back to school 1/2 days and back full days by 6 weeks. As far as tutoring, my daughter was entitled to up to 30 hours of tutoring and only received less than 2 hours TOTAL. Turns out it is very hard to schedule tutoring over Christmas break--maybe that's something to think about when scheduling surgery. Having done all the work herself, she still made honor roll with all A's and 1 B. She was so frustrated after all the hard work, she missed distinquished honor roll by 1%!




    Of course your daughter will heal, but return to school (even part time) at 3 weeks is unlikely, and a "rest in the van at lunch"?? A 1-2 hour nap is more like it.

    My daughter was given permission to go to the nurse's office anytime she wanted to do so and never did. She never called me to pick her up early.

    Is Sharon being unrealistic? Maybe, maybe not. Trust your instincts. You know your child best. It doesn't hurt to set the bar very high, but please remember, your daughter's health comes first.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  11. #11
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Quote Originally Posted by Snoopy
    Is Sharon being unrealistic? Maybe, maybe not. Trust your instincts. You know your child best. It doesn't hurt to set the bar very high, but please remember, your daughter's health comes first.
    In re whether or not I'm being unrealistic, don't most people use what the surgeon tells them as a guideline? I typed verbatim what was in the material about this issue.

    I am still at a loss as to why the surgeon would say what he said and give me the printed material that he did if it isn't in fact the case that usually his patients return to school 3 weeks after surgery (as advertised).

    Now that is no guarantee that my daughter will be the "usual" patient but I can't see taking issue with his statement that his usual patient returns to school three weeks after surgery.

    Per what I was told, and what the material said, I am setting the bar at the AVERAGE height as far as I can tell. She may be back sooner or later than the average of course and we will adjust accordingly. But there is no evidence I have set the bar particularly high.

    sharon

  12. #12
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Quote Originally Posted by Pooka1
    I am still at a loss as to why the surgeon would say what he said and give me the printed material that he did if it isn't in fact the case that usually his patients return to school 3 weeks after surgery (as advertised).
    Sharon,

    Out of curiousity (you haven't mentioned), is he a scoli - or even a spinal - ortho?
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  13. #13
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Sharon,

    I'm glad you understood where my sentiments were coming from.

    With regard to what is told to you by the surgeon, let me share this - We consulted with two surgeons re: VBS (Dr. Betz on the initial visit; and Dr. D'andrea, his colleague who ended up performing the surgery, subsequent to that).

    They were two extremes. Dr. Betz said 2-3 days in the hospital for VBS. Dr. D'Andrea said some kids are there for 8 days (if there are minor complications). D'Andrea then explained that she always uses "worst case scenario" and see the glass half empty, whereas she said, Dr. Betz tends to see things half full. (I found in my further dealings with the two of them that this was true, and I always kept it in mind).

    My point is, what a surgeon says may not be EXACTLY what your child experiences.

    Again, good luck.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  14. #14
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Quote Originally Posted by mariaf
    (snip example of two surgeons giving wildly different length of hospital stays to the same patient)

    My point is, what a surgeon says may not be EXACTLY what your child experiences.

    Again, good luck.
    Maria,

    I realize what the surgeon said to me in person and what the material said may not be exactly what will happen with S. That has never been an issue.

    The question on the table as I understand it (and I'm not sure I do!) is what is this surgeon's experience with kids with this curve in this situation and is he accurately representing that to patients?

    It seems to me either 3 weeks is his ACTUAL "usual" or it isn't. If it isn't then I am at a loss to explain it. It seems more rational to think it actually is his "usual" patient experience. But we will see.

    It further seems to me that certain folks do NOT believe this is his "usual" patient experience and think he is deliberately misrepresenting the "best case" as his "usual" case. I guess they get that from comparison to their experience but I think what we have to compare is other examples that are as close to my daughter's as possible, not random cases out there.

    Thanks again.

    sharon

  15. #15
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by Pooka1
    It further seems to me that certain folks do NOT believe this is his "usual" patient experience and think he is deliberately misrepresenting the "best case" as his "usual" case.
    Hi Sharon,

    I"m not sure that anyone thinks he is deliberately misrepresenting things - I certainly doubt that he would do that deliberately. That's why I used the Dr. Betz comparison. I think when Dr. Betz said to me regarding VBS "2-3 days" in the hospital, he meant if everything goes perfectly. To him that may be the norm because he does not expect, going in, that say, the chest tube might have to remain a bit longer, etc. And there are a LOT of kids who do go home in 3 days - but the average stay (this is a guess) might be 4 days for example.

    I think what people are trying to say (again I could be wrong) is that from all the parents we have heard from (and some of us, including myself, have been talking to scoli parents for several years) getting "almost back to normal" in three weeks after fusion just doesn't seem to be average. Could it happen? Of course! I think we just wanted to make sure you weren't setting yourself or your daughter up for disappointment.

    What's that saying? Prepare for the worst but hope for the best!
    Last edited by mariaf; 03-19-2008 at 06:37 PM.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •