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Thread: what to expect

  1. #1
    Join Date
    Nov 2008
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    what to expect

    Jesse's surgery is Monday morning. Please, no flames. I know every child/surgery/recovery/parents, etc is different. What I'm wondering is how much time did you as parents stay in the hospital? Was there always someone there with your child? We live 15-20 minutes from the hospital and I'm feeling guilty thinking about going home showering, regrouping, maybe even letting off some steam with a quick run. There's no problem making sure we always have someone there, we have plenty of us to make sure Jesse's not alone. but what if I left at 9am and his dad got there at 10 or 11? I feel like I'm a bad mother if I do that.
    Has your experience been that your child wants you there all the time, you felt you needed to be there? Again, I know everyone is different and I'll probably be playing things by ear, but I'm just feeling the situation out.
    Thanks,
    Bethany

  2. #2
    Join Date
    Feb 2007
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    254
    Hi Bethany,

    I do not have a child with scoliosis but I do have scoliosis and underwent surgery 19 months ago. I know everyone is different but when I first decided to have surgery I told my husband I wanted him there 24 hours a day. He said there was no way they would let him stay. When we talked to the surgeon we asked him how he felt about this and he told us if it were his loved one going through this surgery he would make sure someone was at the hospital with them at all times. I was totaly out of it after surgery, in so much pain I could not even find the button to call the nurse. I realize most people do better than I did after surgery but I don't think I would leave them alone.

    Best of Luck,
    Patty 51 years old
    Surgery May 23, 2007(43 Birthday)
    Posterior T3- L4
    Pre surgery curves
    T-53degrees
    L-38degrees
    and a severe side shift to the right.
    Post surgery curves
    Less than 10 degrees
    Surgery April, 2006
    C4 - C6

  3. #3
    Join Date
    Sep 2007
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    338
    My 13 yo son had surgery in Philadelphia 4 weeks ago. We were far from home in a big city. Except for the last night in the hospital when my husband traded places with me, I stayed every night in my son's room. During the day, when I went to the cafeteria to eat something, or to shower or take a nap (I had a room on the top floor of the hospital), my husband was there. Neither of us wanted to leave our son alone.

    I wouldn't worry about being a "bad mother" for leaving for an hour or two, but I know it was hard for me to imagine in advance how strongly I would feel about being there all the time, or how much energy it would take to be there for him. Every time I left, something important would happen--they would take a tube out or an IV, or he would walk or move to a chair, or the surgeon would come by. I was glad my husband was there, and I think my son was, too.

    You do need to take care of yourself, but if you have plenty of people to spell you, perhaps you could have someone on call so Jesse can have someone he knows with him at all times.

    Hope this helps. We'll be thinking about you next week.

    Mary Ellen

  4. #4
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    Jul 2008
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    Perth, Western Australia
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    Hi Bethany,
    My daughter had surgery 3 weeks ago. I am a single mum so had no choice but to leave at certain times. I spent the first 4 nights with her, particularly the night before surgery and the 2 nights she was in intensive care plus first night on the wards. I refused to leave her side and stayed through the night when she was really unwell but even then i had to go home for a shower and meal, etc., and simply unwind, but i generally came back after a couple of hours. You will know how much time you need and be guided by how well Jesse is going and having confidence in the hospital staff will assist your decision-making also. Once Tahlia entered the wards, my routine changed and i went early in the morning, stayingmost of the day and as she got better, i noticed myself spending slightly less and less time there (she was in hospital 2 and ahalf weeks' all up). But generally, I travelled to hospital in the morning, left for home to do washing, have lunch, even shopped a little (usually only to pick up things for Tahlia) and then headed back to hopital staying until evening. Whether i was at hospital or not, everything i did revolved around TAhlia and her stay in hospital or anticipated transfer home, so i did not feel guilty. You have to look after yourself and tiring yourself out by staying in hsopital 24/7 consistently is probably not a good idea either.

    I know you will make the right choices and whatever they are, they will be the right ones for you and your family.

    All the best,
    Lisa

  5. #5
    Join Date
    Oct 2005
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    178
    Bethany, I kind of know what you're going through as I was on the other end of it. I was very sick as a kid and had a number of operations to include my heart and urinary system plus a little more. Both of my parents had to work at the time, but I'm sure there were times when they made a point of being in the hospital. When I was born, the doctors thought I had polycystic kidney disease (fatal in the congenital form). Over 50 years later, my mom still feels guilt over what the doctors told both of my parents which was not to see me, name me, or get attached as I was going to die. Well, I guess I proved them wrong! Moms will do anything for their "baby". One time I was there, I had a hankerin' for an artichoke with a dip made with mayonaise and lemon juice. So the story goes that my mother drove all over southern CA looking for a store that had artichokes, and when she found one, she took it home, cooked it, and brought it in to me. By that time, I didn't want it because it was cold and didn't taste very good. (Those were the days before microwaves.) Another was the time I wanted some of her spaghetti, and of course, by the time she got it there it was cold and not so tasty either. My mother still tends to be a doting mother, and I'm 50+ years old! For heaven's sake, there's no reason why you can't take a break every once in a while. It's good for both of you. In one sense, you're lucky as a parent in these days and times as they didn't used to be so keen on parents staying overnight with their kid(s) in the hospital. I still remember the eerie crying and moaning from the younger kids after their parents would tell them they would be right back and then leave for the night. While tweens and teens may still be very dependent on parents for emotional support, especially with such a significant thing happening in their life, they have enough maturity, and concept of time to understand that mom or dad needs to be away for a little bit, and know that they will be back. That's a tough thing for kids that are in the 2 - 6 y/o age group to comprehend. While it's great to be there for your son, you also have to let go just a little bit so that he can grow from the experience. Remember also that communication capabilities are much better than they were some 40+ years ago so that should help a lot if there was a problem that came up. Remember that if something does happen, even something minor, it would likely have happened whether you were there or not. I hope your son is doing well. Love him, support him, be there for him, but don't mollycoddle him. What you're going through is a very normal reaction, and you should not feel bad about having the feelings, or about taking a little time to yourself.
    Last edited by The Slice; 12-10-2008 at 05:45 AM.

  6. #6
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    Bethany,

    Do what feels right for you and Jesse. We too live about 20 minutes from the hospital, which was very nice. Someone was with Jamie 24/7. She wanted it that way. She didn't even like me to leave for a few minutes. So here's what we did.....

    I stayed over night every night. I would go down the hall to the parents' room and get a cup of tea and a bowl of cereal or muffin for breakfast. My mom would show up after putting my youngest daughter (Tracy) on the bus and some days she'd bring food from home that I prepared ahead of time for our lunch. Once she arrived, I'd take a quick walk or clean up and change my clothes. Mom would stay with us until time to get Tracy off the bus. She would feed Tracy dinner and come back to the hospital so I could spend time with Tracy. My husband would come right from work. One of them always brought me supper or went to the cafeteria or sent me to the cafeteria. Most nights my mom would take Tracy home and get her ready for bed and stay with her until my husband got home. Jamie was in the hospital 6 days and I only left the hospital twice and I probably wouldn't have done that if I hadn't felt Tracy needed me to do so. My husband and mom stayed with Jamie and Tracy and I ran home for probably less than two hours. I showered, got more clothes, checked e-mails, etc. but mostly spent time with Tracy. She talked nonstop the whole way home and the whole way back to the hospital! If you have other children, please remember their needs as well.

    I felt quilty every time I left, but I needed time away for my sanity. During one of my trips home, the surgeon came into check Jamie and I beat myself up for awhile for not being there. But the doctor made me feel so much better---he asked my husband where I was (because I was always there and asking a bunch of questions and filling him in on how Jamie was doing) and he said that was great, I needed to take care of myself so I could take care of Jamie to the best of my ability. So, please remember, you need to take care of yourself so you are healthy and as well rested as possible to take care of Jesse.

    Good luck.

    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.

  7. #7
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    During the first few days when there is so much for a parent to help with, so many little yet critical things, someone was with my daughter. I stayed in her room with her all but a few hours each day when my husband and other daughter arrived. He would pick our other daughter up after school. These daily visits were extremely important for both girls. There was a couch/bed in my daughter's room where I slept.

    Most of the time in those first few days, I occasionally could leave for 15-20 minutes to grab a meal at the cafeteria. More often, I would run down and get food and bring it back to the room. I would ask her if she would be alright if I left. If she was trying to sleep, I would go then.

    After those first few days, I was more willing to leave. I had most meals in the cafeteria. Small snatches of down time besides when I returned home to shower each day.

    My advice is to plan on you and(or) your son wanting someone there most of the time.

    It's doable. I am not sitting here cringing at the thought of going through it again with our other daughter if necessary. It's not like it would be a choice anyway.

    Good luck.
    Last edited by Pooka1; 12-10-2008 at 02:41 PM.
    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."

  8. #8
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    May 2006
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    I spent almost the entire time in the room with my daughter. We went out of town but we had a hotel room within the hospital complex. Besides that, we had the largest room in the children's hospital according to the nurse, it was more like a suite and it never felt claustrophobic. My husband slept in the hotel room most nights except for one particularly bad night when I needed him to be there with us and brought meals to the room. I took showers in the hotel room and once in the hospital room.

    For me, it was a matter of wanting to be there to know what was going on and to be available for my DD for physical and emotional comfort. I ended up doing a lot for her because the nurses are just too busy to attend to every little thing; like giving her ice and drinks, heat packs, turning her and later on, helping her in and out of bed to walk and use the restroom. They'll teach you how to help get them out of bed safely. Because of my daughter's fusion into the lumbar, you have to know how to keep the legs and torso aligned when they move. Don't be afraid to pitch in and help if and when you can, it helps to relieve the stress and you won't feel so helpless.

    A week is really such a short amount of time, there were stressful moments but I was happy to be with her. Also, the doctor made his rounds very early, sometimes between 5-6am and at different times in the afternoon.

    Best wishes to you and Jesse.

  9. #9
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    Apr 2007
    Location
    Seattle, WA
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    I, too, rarely left my son's room. I only left the hospital grounds twice during the five days he was at the hospital because I felt like I couldn't leave. I got "dragged" out twice by family or friends. But he had a private room after the first night so I could shower there - only when someone else could sit with him. He was so out of it the whole hospital stay and I needed to keep track of everything going on, press the morphine pump button if he couldn't, etc. I also kept a notebook of all the details, ie. doctors, nurses, meds, any info that I felt was important. Now my son really enjoys reading it. It really helped me remember times and dosages of meds, especially when he got home. I was so sleep deprived but barely slept the whole time he was in the hospital. Finally, the last night, I made him use the nurses call button more so I could get a little more sleep.
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  10. #10
    Join Date
    Nov 2008
    Posts
    71
    This is so helpful. Thank you all for sharing. I am one of those people that need to have an idea of what things will look like. I have to have a plan, even if it may change.
    My original plan was to be there the whole time because I cant fathom NOT being there. Then people were saying that I need to take care of me too, so that when he gets home I'm not burnt.
    Jesse's Dad can only stay overnight the night of surgery and he can be there Tuesday til 3 and Wednesday 11-6. I really feel I need to be the one there the first night, but since I know he can't stay any other night, I conceded. His dad said that he will sleep elsewhere at the hospital if I want to stay in Jesse's room (we're divorced).
    My husband and I talked this morning and we are going to work on a tenatative schedule so that he will stay with Jesse while I go home, shower, throw laundry in, whatever.
    I know I've said it before, but I am so thankful for this forum and wish I had found you guys sooner!
    Bethany

  11. #11
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    Apr 2008
    Location
    Ontario Canada
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    Mydaughter had surgery 2 1/2 weeks ago. We as well live 20 to30 min from hospital so I did go home everyday for a shower felt like heaven. My husband would come up and I would leave. She did want one of us there at all times as well we felt better with that as the nurses on the floor have several patients and are not always there when she need someone. I spent every night with her and as uncomfortable and crappy it was I could not have imagined leaving her overnight. Alot of people do not have a choice but to leave there loved ones and that is ok I think you do what you have to do to get through and although it feels like forever at the time before you know it you are back home and it is all over. I will say the first night she was in ICU we did leave her my husband went home for the night and I planned to stay but around 12:00 I decided I would be better off getting a couple of hour sleep so I could give her all of me the next day. In Icu they receive one on one care so I felt ok going. Good luck
    Catherine
    Mom of 14 year old Danielle
    T45 degree curve Feb 2008
    T47 degree curve May 2008
    T50 degree curve Sept 2008
    Surgery Nov 24th 2008
    Ontario, Canada

  12. #12
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    Bethany, that's a good plan going in.

    Just a few thoughts..

    Maybe both you and your ex-husband can stay that first night. I know that even if my husband could stay, I would have stayed also.

    If your son is in ICU the entire first night, your visiting time may be very limited. I know ours was extremely limited during the few hours my daughter was in ICU. She was in a regular room by early that evening so I stayed in the room with her that first night. It might be that hospitals that keep the kids in ICU longer allow more visits from parents, I don't know.

    I stayed with my father, sleeping on the floor, during the last few days he was in the hospital before he died. I also stayed with my mother for several days over one Christmas and away from my kids in another city.

    I would say the needs of my daughter that I was able to meet, especially during the first few days, were greater than those of both my father and mother put together. That is, it really makes a difference in my opinion if someone is there virtually all the time for this surgical recovery. The nurses can't possibly do everything that really matters in the first few days.

    The two most important things I was able to do were:

    1. to wet my daughter's lips/mouth with ice water which I kept ice cold by replenishing it a million times for the three days she couldn't drink but was parched, and

    2. straighten her in the bed after being turned. She was always very concerned about being perfectly straight for some reason and was greatly upset if she wasn't sure she was laying straight. So I would adjust her hips or shoulders or knees, sometimes for minutes on end, until she believed me when I told her she was straight. In hindsight, I should have brought a large mirror so she could see for herself. I'll be ready on this point if/when the next kid is up.

    There is no way a nurse would have had the time to do either of these things but I would say both were absolutely critical to my daughter at the time.

    Again, good luck and you'll be a star.

    sharon
    Last edited by Pooka1; 12-10-2008 at 05:35 PM.
    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."

  13. #13
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    Jan 2006
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    PA
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    Sharon,

    I'm laughing my butt off at your daugher wanting to be perfectly straight in bed! It reminds me so much of an experience I had with Jamie. Long story, short, she wanted the pillow that was supporting her back while she was on her side to be adjusted.....repeatedly. I swear, I adjusted that pillow that day at least 100 times! It took me probably two hours to eat my lunch because just when she thought she was comfortable, I'd start to take a bite and she'd have me move the pillow again. And you're right....no nurse would have the time to do what we moms/dads do for our kids.

    Another important reason to have someone with the kids.....Jamie wanted me to turn her, help her in and out of bed, to the bathroom, etc. She trusted me more than the nurses, but with me, she didn't have to wait like she would have had to do with the nurses. She was also more willing to walk the halllways with me than with a nurse.

    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.

  14. #14
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    Jan 2008
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    NC
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    Hey Mary Lou,

    I suspected someone would dig that or something like it.

    If Savannah wasn't so honestly concerned, I would have suspected we were on Candid Camera with the prolonged straightening episodes every two hours.

    sharon
    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."

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