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Thread: Alexander is home!

  1. #16
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Melissa,

    We didn't buy or rent anything after Jamie's surgery. We are lucky enough to have a walk in shower with a built-in seat, which she used for the first week or two and then she was back to showering in her own shower without a seat. She never needed a grabber thing, raised toilet seat or anything else. The chair she found most comfortable was a wooden rocking chair with a high back. We simply put a regular bed pillow behind her back to make it a little more comfortable.

    Jamie only had about two hours total of tutoring and she went to school and sat in the library with her teacher without any problem. At meal time, she sat at the table as usual--no pillows or special chair needed.

    Really, the only thing we did special for Jamie was to bring her bed downstairs. For the first two weeks, she slept downstairs and I slept on the couch. By the end of the first week at home, I could have slept upstairs because she just didn't need me. We put one of her sister's beds in Jamie's room and she started sleeping upstairs after being home about two weeks, but kept her own bed downstairs in case she wanted to lie down while watching TV (we don't have TV's upstairs), or take a short nap after school. Remember, Jamie returned to school p.t. at about 4 1/2 weeks, so she sometimes rested downstairs.

    My advice would be to wait until you see how she does in the hospital before ordering anything for the house.

    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.

  2. #17
    Join Date
    Sep 2005
    Posts
    877
    Thank you so much for sharing your story. I think I am over-thinking things to deal with the helplessness that I feel. I appreciate everyone's advice.
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  3. #18
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Carmell, I never thought you were rambling - you always have good advice & input.

    Melissa, I can totally understand the helpless feelings you have. One thing that really helped me with that in the hospital & even through today was keeping a notebook of everything that happened. Several people on this forum have mentioned it & it really helps. I kept track of everyone's names, ie. doctors, nurses, PTs, etc., as well as times that meds were given or that various procedures were performed. I wrote down all the info I was given by the OR nurse from the operating room and as much as I could remember of relevant conversations I had with all the personnel throughout our hospital stay. Now I am mostly just using the notebook to record the times I give Alexander his meds (I stopped recording poops, naps & other things that seem to be more back to normal a few days ago).

    I realized I did buy one thing that was esp. helpful the first few days we were home: a baby monitor. My husband & I took turns sleeping on Alexander's floor (on a comfortable mat) the first couple of nights we were home but now I just use the monitor. It was also helpful during the day when he was napping & needed my help & I could only hear him on the monitor because of household noise. He usually needed my help getting out of bed but is now doing that on his own - he only needs my help getting the pillows in the right position before going to sleep.

    He is still having pain but we have started decreasing the meds & he seems to want that. He seems to have a high pain tolerance because he has never said it was above a "4" on the pain scale (1-10). It is so hard to be patient when your child is suffering any kind of pain & there is not much you can do to help it. He is such a trooper & I am so proud of him for all his hard work. I had better stop rambling on now...
    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.

  4. #19
    Join Date
    Sep 2005
    Posts
    877
    Laurie,

    Thanks again for sharing all of the things that worked for you and your family. It is extremely helpful. I am so happy for you that your son is on his way to a great recovery.

    We are having a huge "Let's Get it Straight Party" for Nicole. We are very busy planning that and that is keeping us all focused on something positive. Nicole is very scared to give blood. But she has to do it. It will be good for her to face her fear right before facing surgery.

    Please continue to keep in touch. I am sure I will continue to have questions.
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  5. #20
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Writing about this seems to be therapeutic for me so I am glad you find it helpful. The party idea sounds great. I'm sure Nicole will do fine with the blood donation as long as she drinks a lot of fluids & is well hydrated before she goes. I've donated a lot of blood over the years & once the needle is in, you barely feel anything. She might just look away from the needle & take some deep, relaxing breaths while they're inserting it.

    Alexander hasn't taken any narcotic pain meds today - he doesn't seem to need them anymore, less than two weeks after his surgery. He's only had a couple of tylenol so far. It's incredible how quickly his pain has diminished & how well he seems to be healing. However, his posture is still a work in progress. Everyone seems to feel they need to tell him to stand up straight because he is leaning forward & a little to the side. I was so glad to hear Ramona say the same thing about Patrick because it really normalizes it for me. I am trying to be the one who leaves Alexander alone about his posture as well as the one educating others to leave him alone about it. Per Carmell's advice, I may get his leg lengths checked out depending upon what the surgeon says at his 3 week check up in a week & a half.
    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.

  6. #21
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Hi Laurie

    It's so great to hear how well Alexander is doing! My friend's son's recovery sounds very similar, he was off pain meds within 2 weeks too. He also had the hunched over posture, she was very concerned about it too but I think he's fine now. Have you been able to measure him to see if he grew?

    Did he have any gastric problems (gas, bloating, etc)? That seems to be a big issue and seems to cause more pain than the surgery itself in some cases. Any advice there?

    It's really wonderful to hear another successful surgery story. It gives me confidence that we are going to do fine. Glad you and Alex are back.

    By the way, has anyone heard from Sam (New York)? His daughter had surgery several weeks ago.

  7. #22
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Hi Sherie,

    We measured Alexander on our wall chart the morning of the surgery & again the day after we returned home. He grew over an inch & his torso looks longer (& a lot skinnier). He did have gastric problems - lots of nausea in the hospital & constipation. He never complained of stomach aches that seemed to be gas-related. I guess being able to poop after this (or any?) surgery is a big deal. They were almost going to keep him in the hospital another day if he didn't "produce", but then it happened. The nurses had given him something to drink to help the situation & a glycerin suppository. I've been giving him stool softeners & acidophilus/bifidus capsules (the bacteria that's in yogurt - he doesn't like yogurt) to help increase his good intestinal bacteria. He seems fine in this area now.

    Take care,
    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.

  8. #23
    Join Date
    May 2007
    Location
    Jacksonville Florida
    Posts
    11

    Congratulations!

    I am so happy and relieved to read everything went so well for Alexander, you have no idea!

    Erica is scheduled next Monday with Dr. DeWald in Chicago. I could not be more nervous, but reading about Alexander helps.

    All my best for his continued success!

    Laura
    52 L 34 T

  9. #24
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Laura, I'll be thinking really positive thoughts about your daughter on Monday. I'm sure it will go really well for her. I wish her a very speedy recovery. Hang in there yourself too.
    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. #25
    Join Date
    Mar 2006
    Location
    DFW, TX
    Posts
    159

    Thnaks for this thread!

    My daughter will be getting fusion surgery this Tuesday August 1st. Sherie referred me to this thread due to all the good tips and I appreciate it. I recognize some others like Melissa, and wish you the best and thanks for everyone's advice. I am glad your son is doing well. We have been told it will be about 7 hours in surgery, but that may include all the prep, which I didn't think of. I thought that I was told shorter surgery time. Well I was wondering if we needed to get Pj's that buttoned up as wondering if it was hard to lift arms high over head, and if easier to have no bottoms, like a button up gown. I am worried about pain, and all your info was helpful.

  11. #26
    Join Date
    Jan 2007
    Location
    Ontario, Canada
    Posts
    140
    Mom37
    I bought Patrick a bunch of button up shirts and he never wore them. He prefers his t-shirts a bit baggier. Now thinking about it, since girls fashions seem to be tighter buttons might be better but I don't think Patrick ever had any problems with reaching over his head. He was fused T4 to L1 so maybe if the fusion goes higher there may be restrictions. Also in the hospital it was just easier to use the hospital gowns. Not a fashion statement but comfortable enough....sorry for rambling,
    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

  12. #27
    Join Date
    Dec 2005
    Posts
    40
    My son just got home today from having final fusion with two new rods this past tuesday and he wore hospital gown while there but today put on a t-shirt. I helped but he was fine putting hands thru sleeves. He has had alot of pain on and off the past couple days too but he did it. Good luck.
    Stacey

  13. #28
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Alexander wore the hospital gown the whole time he was in the hospital - he only changed into his regular clothes to go home. I helped him with his t-shirts, both on & off the 1st few days he was home but now he dresses totally independently again. He can even do his own socks & shoes. I'm glad all the info on this thread was helpful. I've learned so much reading about other people's ways of coping with this surgery & recovery. I don't know what I would have done without this forum. I am so grateful to everyone who shares any support or information.

    Good luck with your daughter's surgery. I'm sure it will go really well & you will feel so much better when it is over. I will be thinking about you both on Tuesday. Please let us know about it when you can & don't hesitate to ask more questions if you have them.
    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.

  14. #29
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Hi Laurie

    Thanks for the advice, I guess it's normal to have some constipation and is to be expected. My friend's son is still not eating well and has lost a lot of weight on what was already a thin frame so they think there is some other underlying problem.

    Just wondering if Alex had to wash with some special soap before surgery and for how long?

    Also would like to get your opinion, do you think Alex would have been ready for a 2 hour flight a week after surgery? We're flying to St. Louis and were told when she's discharged, she can fly home which is 2 hours nonstop to Houston. Is this realistic? This is a big concern of mine right now, also my son's birthday happens to be the week after her surgery and I would like to be home for that as well.

    Sounds like Alexander is continuing to do very well, so glad to hear.
    Take care

  15. #30
    Join Date
    Mar 2006
    Location
    DFW, TX
    Posts
    159

    Thanks for your reply

    Quote Originally Posted by scoliboymom
    Mom37
    I bought Patrick a bunch of button up shirts and he never wore them. He prefers his t-shirts a bit baggier. Now thinking about it, since girls fashions seem to be tighter buttons might be better but I don't think Patrick ever had any problems with reaching over his head. He was fused T4 to L1 so maybe if the fusion goes higher there may be restrictions. Also in the hospital it was just easier to use the hospital gowns. Not a fashion statement but comfortable enough....sorry for rambling,
    Ramona
    Her fusion will be about the same. We go to preop tomorrow, and I guess we will ask questions. In hospital we would just use gowns there, but just was thinking at home, but probably will just make due unless told or feel otherwise. Thank you for your response.

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